Informing the development of NICE (National Institute for Health and Care Excellence) quality standards through secondary analysis of qualitative narrative interviews on patients' experiences

Clinical guidelines

Historically, the DH has commissioned NICE to provide guidance to the NHS and wider public under a number of different programmes. They have produced CGs which set out clear recommendations for the treatment and care of people in England, Wales and Northern Ireland with specific diseases and conditions since 2002. Separate guidelines are produced for Scotland by the Scottish Intercollegiate Guidelines Network (SIGN). NICE commissions guidelines from several National Collaborating Centres (NCCs). The largest of these is the National Clinical Guideline Centre (NCGC) which was established in 2009. The other centres comprise the NCC for Mental Health, the NCC for Women’s and Children’s Health (NCC-WCH) and the NCC for Cancer. NICE also have an internal guidelines programme.

All NICE CGs are based on a review of the best available evidence of the clinical effectiveness and cost-effectiveness of treatments for specific diseases and conditions. There are also generic guidelines, which cover subjects such as patient experience and medicines adherence. As each guideline covers a specific condition, or a specific aspect of a condition, there is also extensive cross-referral between guidelines; for example, the guideline on management of obesity is referred to by guidelines on cardiovascular disease and diabetes. The process and methods of developing a guideline is a pre-specified and lengthy process and is described in the NICE guidelines manual. 11 Guideline topics may be suggested by the DH or Welsh Assembly Government, by health professionals, and by patients and the public. Once a topic is referred to NICE, NICE commissions the guideline development centre, who recruit a chairperson and starts to develop the scope of the guideline. This process involves consulting with stakeholders (who register through the NICE website) to determine what will, and what will not, be covered by the guideline. The scope defines areas of clinical management, the target population and important outcome measures. The stakeholder consultation involves a workshop and a formal written consultation process. The scope is finalised and signed off by NICE. The areas included in the scope are converted to a series of clinical ‘review’ questions during guideline development. The chairperson and a guideline development group (GDG) are recruited for each guideline. These groups comprise health professionals [consultants, general practitioners (GPs), nurses and allied health professionals] and lay members (patients, carers, service users) and are supported by a technical team of an information scientist, a health economist, research fellow(s) and a project manager. All GDG members have an interest or expertise relevant to the topic. A systematic review is performed for each clinical question by the technical team. The quality of the evidence is scored and the cost-effectiveness reported if available or original health economic models developed. The GDG meets every 4 to 6 weeks over a period of 16 months to examine this evidence and to make recommendations based on the evidence and their clinical or personal experience. The wording of these recommendations is chosen carefully to reflect the strength of the evidence. The draft guideline is available for a second period of consultation by stakeholders, after which alterations are made by the GDG if needed. The final guideline is reviewed by NICE and published on the NICE website in different formats: the full version (which lists the methods and evidence and details how the recommendations were derived from that evidence); the NICE version, which lists the recommendations alone; and a lay version. NICE produces ‘pathways’ on its website which present guidance in such a way as to allow easy cross-referral between different guidelines that may be relevant to people with a disease or condition.

Quality standards

Quality standards are a set of specific, concise statements that act as markers of high quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions. They should be aspirational but achievable and define priority areas for quality improvement. 12

NICE were first tasked to develop QSs for the English NHS in the Darzi Review of 2008. 13 In 2010, the profile of NICE QSs was raised significantly, with the new coalition government emphasising the centrality of NICE QSs in the ‘new NHS’ in its 2010 policy paper Liberating the NHS and in the subsequent 2012 Health and Social Care Act. 1,3 Referrals to NICE for QSs are made by NHS England. QSs are intended for use by health-care professionals (to raise standards of care), patients and the public (so that they are informed of the quality that they should expect of the services provided to them), service providers (to enable performance to be assessed) and commissioners (to help them to purchase high-quality services). Audience descriptors append the QS.

Each quality statement is also accompanied by a ‘quality measure’ which defines the proportion of the target population (as a numerator and denominator) to which it applies (for auditing purposes). To keep the administrative burden manageable, each statement specifies only one measurable metric. QSs inform incentive schemes and payment mechanisms – such as the Clinical Commissioning Groups Outcomes Indicator Set, the Quality and Outcomes Framework for general practice, and the Commissioning for Quality and Innovation payment framework – by linking a proportion of the provider’s income to the achievement of quality improvement goals.

The descriptive statements that constitute QSs are derived from three dimensions of quality: effectiveness, patient experience and safety. Equality issues and resource impact are also considered. The process of QS development is still emerging. The first ‘pilot’ QSs comprised approximately 15 statements which described what good-quality care should look like. As the QS programme rapidly expanded, the need to reduce the administrative burden on service providers was recognised (each statement of each QS has to be measured and audited) and the maximum number of permissible statements was reduced first to 10 and then to between six and eight.

During the lifespan of this study, the process of QS development was as follows (Figure 1): after a QS was referred to NICE, it was developed by a topic expert group (TEG) over three meetings. The TEG, like a GDG, comprised health professionals (consultants, GP, nurses and allied health professionals) and patients and was convened specifically for each QS. During the first meeting, TEG1, the scope of the standard was defined. The scope specified the population groups that would and would not be covered, the health-care settings (primary, secondary, intermediate care and community settings) and areas of care that would and would not be considered. Furthermore, the scope considered economic aspects and designated key development sources (published CGs, guidelines under development, related QSs, other accredited evidence, key policy documents and national audits). Registered stakeholders were invited to comment on the draft scope before it was finalised by NICE.

FIGURE 1.

Overview of the NICE QS development process (at time of fieldwork).

During the second meeting (TEG2), quality statements were discussed and developed with support and guidance from NICE technical teams. The draft QS was also put out to consultation before further development in a third meeting (TEG3). The product was reviewed by NICE before it was finalised and published.

Towards the end of 2012, this process began to be superseded by a standing-committee model. After a topic has been commissioned, a topic overview is developed by a NICE QSs team and published on the NICE website. Registered stakeholders are invited to suggest key areas of care or service provision for quality improvement. A Quality Standards Advisory Committee (QSAC), which again comprises health professionals (consultants, GPs, nurses, allied health professionals), commissioners, experts in quality measurement, NICE representatives, and patient, carer and service user members, meets to prioritise areas for improvement that should be taken forward into draft quality statements. These statements are produced by the QSs team and comment is invited by stakeholders once more. The QSAC meets a second and final time to discuss and modify the draft statements in the light of stakeholder comments. The final product is quality assured and approved by NICE before publication. QSs are reviewed after 5 years. Since April 2013, NICE has an expanded remit to provide guidance and set QSs for social care audiences (further information can be found at www.nice.org.uk/socialcare/).

Although two very different products, the CGs and QSs are related. A major feature of the QS process is agreeing which of the large number of recommendations in a CG should be prioritised for development as a small number of measurable statements. As stated above, the focus is on three dimensions of quality: effectiveness, patient safety and patient experience. There is also a standalone patient experience QS (see Appendix 1), which was developed concurrently with the patient experience CG, with access to the same information. Topic-specific quality statements are not supposed to duplicate material in the patient experience QS. QS development does not include any in-depth discussion of evidence, as this has taken place during the development of the CG, though this may lead to tension when new evidence or changes to practice have emerged in the interim. The NICE manual that was used at the time of our fieldwork contained guidance as to how qualitative evidence might be incorporated into the guidelines development process (see Appendix 2). A detailed figure illustrating the CG development process is appended (see Appendix 3).

Reusing research data

Two developments in prevailing research cultures particularly favour reuse of existing data. First, synthesising published and unpublished research before (or instead of) conducting new research is now mainstream practice. 22–24 Secondly, following the decision in 2000 by the ESRC to require ‘award holders to offer for archiving and sharing copies of both digital and non-digital data to the Economic and Social Data Service’ (p. 256) and to seek the correct permission to do so when collecting data,25 several funding bodies nationally26,27 and internationally28 have followed suit. Many now have explicit expectations that publicly funded research should be shared to maximise the value of data for the public good and ‘to expedite the translation of research results into knowledge, products, and procedures to improve human health’. 29 There has been a debate in the qualitative research community about the legitimacy of secondary analyses. 30 However, the HERG qualitative interview archive has been widely used, under licence by many established research groups, both nationally and internationally, in work funded by the NIHR, the ESRC and the Medical Research Council (MRC) among others. Articles based on secondary analyses of these data have been published in high-impact journals. 31–35 A secondary analysis of HERG data was commissioned by the General Medical Council (GMC) to contribute patients’ perspectives to the guidelines on end-of-life care. 36

Research methods

In this study, we employed the considerable expertise that exists within the HERG to conduct secondary analyses of interview collections covering selected health conditions so as to identify a candidate list of common components of good health care that was grounded in patients’ experiences (objective 1). The reach of this candidate list was tested through further analyses of other data sets from the archive and through FG work (objective 2). In many cases, we were also able to draw upon the expertise of the primary researcher who could provide additional perspective, insight and contextual information.

Myocardial infarction

The data collection took place in 2002–3 and participant recruitment aimed for diversity. Most were white British and living with a partner or spouse. The sample included fewer women than men and a higher proportion of younger patients (i.e. aged < 55 years at time of diagnosis) compared with the age profile of patients currently experiencing MI in the UK. The diversity in participants’ ages made it possible to explore adjustment to MI and patients’ information and support needs at different ages and stages of the life course. The sample spanned all socioeconomic groups from all parts of the UK, including urban, small town, rural and remote areas. Recruitment routes included GPs, charities and support groups. Analysis explored accounts of experiences of MI and also adjustment and engagement in secondary prevention from different vantage points in the trajectory of illness and recovery.

Asthma

The analysis of this 2012 collection benefited from the insights of the primary researcher who was able to provide additional contextual information. The sample comprised interviews with 38 people (25 women) diagnosed with asthma during 2011–12. Their ages ranged from 16 to 73 years and included 17 participants with childhood-onset (age at diagnosis 6 months to 12 years). Four of those with adult-onset asthma had been diagnosed over the age of 50 years. Length of time since diagnosis ranged from under 1 year to over 30 years.

Young people with type 1 diabetes

The secondary analysis drew on peer-reviewed topic summaries (themes from the primary analysis) which had already been published on www.youthhealthtalk.org (the sister site of www.healthtalkonline.org for young people). The full data set comprised 37 young people, aged 15–27 years, diagnosed between 1 year and 24 years of age, mostly interviewed in 2006, with updates in 2010 and 2012.

Rheumatoid arthritis

This collection was based on a core set of 38 interviews conducted in 2004–5 and an update of 14 newer interviews from 2012. The interviews included a wide range of ages at diagnosis from 5 to 74 years, and the time that participants had lived with the condition ranged from very recently diagnosed to 46 years. This diversity in participants’ ages and length of illness experience made it possible to explore how the experience of RA and patients’ information and support needs differed at different ages and what the adjustment to living with RA might require practically and emotionally at different stages of life. The sample reflected the diverse severity of the condition across individuals and time periods and included treatment with disease-modifying anti-rheumatic drugs (DMARDS), steroid tablets, injections and intravenous pulses, biological treatments (anti-tumour necrosis factor and B-cell therapies), as well as management with analgesics and non-drug treatments.

Core components of good health care for patients after a myocardial infarction

People who had had a MI often described feeling shocked and vulnerable and, at least in the short term, lacking confidence in how to manage treatments and other changes to their life. They appreciated kindness and honesty from staff with specialist cardiac knowledge who understood the impact of the illness on the patient’s life. Findings suggested that the relative importance of specific aspects of care varied along the care pathway, reflecting patients’ evolving understanding of, and adjustment to, their condition and their changing information and support needs. We describe below why these aspects of care were important to patients after a MI, with illustrative extracts from the MI interviews.

Additional perspectives from patients with asthma

Asthma is a chronic condition, often diagnosed in childhood. Below, we describe aspects of good care identified from our interviews with people diagnosed with asthma in childhood or as adults. While many of the components that we have already discussed, such as being taken seriously by health professionals and being treated with kindness and honesty were, of course, also very important to people with asthma, there were particular perspectives on good care that may be more specific to a chronic health issue. These included having one’s own knowledge and experience in managing the condition recognised.

Additional perspectives on good care from young people with type 1 diabetes

Our analysis of the aspects of good care that were important to young people with diabetes included further parallels with those identified for MI and asthma and also a few topics that were specific to this condition (see Table 3).

Diabetes is a chronic condition which is largely self-managed by patients. All of the young people in this collection had been diagnosed when they were children or young people aged < 25 years and some had experience of the transition from child services to adult services, which raised particular issues for health care.

Additional perspectives on good care from people with rheumatoid arthritis

Rheumatoid arthritis is a condition that affects people very differently, which makes a flexible approach to care, including individual assessment of patients’ information and support needs and tailoring of service level, particularly important. Treatments have changed considerably in recent years, with the result that many patients can now avoid disfiguring damage to joints. People with RA experience pain, stiffness and mobility restrictions, the unpredictable nature of which can cause particular difficulties in their relationships, family, work and social lives. Several of the additional perspectives on good care that we identified from this collection relate to these characteristics of the disease. These perspectives are summarised in relation to the other three conditions in Table 3.

Summary: sourcing the core components of good health care

After completing the secondary analyses for the four HERG interview collections, the researchers merged the findings and key issues highlighted in the outputs produced for NICE/NCC technical teams. We also mapped the similarities and differences in perspectives of good care on a Microsoft Excel spreadsheet (Microsoft Corporation, Redmond, WA, USA), which was updated as each secondary analysis was completed (see Table 3).

While many of the core items were common across all conditions, some interesting variations emerged, which will be explored further in a conceptual paper for a social science journal.

Finally, we reduced the total number of core components by collapsing similar or closely linked core components under broader headings, while also maintaining what appeared to be distinct aspects within each.

The final list of candidate core components was intended to be:

1. about good care rather than basic or legal standards (e.g. ‘the doctor is qualified to treat me’/’I’m treated fairly/not discriminated against’)

2. generic, that is apply regardless of health condition or care setting

3. expressed in clear, understandable language from the patient’s perspective.

Further discussion within the Oxford team and feedback from lay steering group members on the candidate list resulted in the following revised list of eight core components (and 20 related ideas). The components were written from the patient viewpoint, and lay representatives of the steering group ensured the use of plain English. These were further tested and modified within the FGs and online discussion forum with ‘seldom heard’ health service users:

• Involving me in decisions about my care:

  • My health concerns are taken seriously.

  • Health professionals help me to take care of my own health.

  • When choosing a treatment, health professionals listen to what is most important to me.

  • I can refuse a treatment.

• Having a friendly and caring attitude:

  • Health professionals are interested in me as a person.

• Having some understanding of how my life is affected

  • I am asked how my problem affects my work, my hobbies, and so on.

  • Health professionals think about my family and not just me.

• Letting me see the same health professional:

  • I see a health professional who I like and trust.

  • I see a health professional who knows my medical history.

• Guiding me through difficult conversations:

  • I am told bad news with kindness and honesty.

  • I feel at ease to ask about embarrassing things.

  • Health professionals help me to tell other people about my problem.

• Taking time to answer my questions and explain things well:

  • Health professionals explain why I might have developed a problem.

  • I am told what a treatment is supposed to do and what side effects it can have.

  • I am told about the different steps involved in my care.

• Pointing me towards further support:

  • I am told about things like self-help groups, or benefits advice.

  • I am told who to contact in case of unforeseen problems.

  • I am told about other health professionals that can be helpful to me.

• Efficient sharing of my health information across services:

  • Health professionals in different services are up to date about my health problem.

  • I have a written record of what has happened to me, or a care plan.

A number of components which patients often described as important aspects of care (including physical comfort, well-trained staff, confidentiality, effective treatment, dignity, access to medical records, access and waiting times, lack of discrimination, prompt attention when needed)9 were not included in the candidate list because these were judged to be features of basic or minimal rather than the ‘good’ health care which is intended to be the focus of NICE QSs. We will come back to several of these issues in the discussion (see Chapter 7) in which we discuss different perspectives on what is considered ‘basic’ or minimal care and what is thought to be good, aspirational or even unattainable to the FG participants.

Fertility problems

The nature of infertility and its treatment is, in some ways, akin to a chronic condition. The realisation of a problem and getting a diagnosis can take months or years. The average length of time patients reported trying to conceive was 4.7 years (range < 1 year to 20 years). 60 Sometimes there is a clear diagnosis, which can indicate a specific treatment (e.g. blocked Fallopian tubes or hormonal imbalance), but often fertility problems are unexplained. It can affect one or both partners. While initial tests take place in primary care, most treatment takes place at specialist clinics in secondary care. Treatment is provided on the NHS, but is limited. Most treatment in the UK takes place in private clinics (60%). Only around one-quarter of all treatment cycles started result in a live birth.

Individuals who are being treated for fertility problems are rarely ill. They are mostly young and healthy, and their encounters with health services for assisted conception are often the first time that they have been to see specialist doctors. The staff patients come into contact with are GPs, fertility specialists, embryologists, nurses and counsellors.

Adults with autism

Autism is a lifelong neurological condition that manifests in communication and interaction differences, and difficulties in how people make sense of the world around them. It is a spectrum condition, which means that people are differentially affected. Some people are able to lead independent lives, while others may need specialist support. The prevalence of autism is increasing and is estimated to be 1.1% of the UK adult population. 61,62 Diagnosis of autism can be variable and is based on clinical assessment and observation, history from the family and instruments such as the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview-Revised. Both are in use, albeit with widespread variation. 63

People with autism are not typically physically unwell and, once diagnosed, whether in childhood or as adults, there is no cure. Treatment consists of management strategies which are delivered by specialist services. The multidisciplinary teams (MDTs) include paediatricians and psychologists for children as well as social workers. People with autism may have other psychological and psychiatric diagnoses such as learning disability and mood disorder, and as adults are likely to be seen by psychiatrists and psychologists.

Methods of analysis

The two conditions were analysed thematically by the original researchers who had collected the data. This meant that they were very familiar with the data, thereby overcoming one of the concerns relating to secondary analysis. 30 Each researcher returned to the relevant coding reports from the initial analysis (for infertility: going to the GP, decisions and choices; for autism: autism diagnosis, health and depression, professional support). (In the case of autism, all but two of the participants within the data set were able to articulate their experiences.) These reports were reanalysed and links were made across the codes using a mapping technique. 64 These were interlinked, with codes subsumed or expanded until the core components of good health care were identified. At this stage, the researchers met to discuss and compare findings.

Findings

There were some similarities but also clear differences in what these two groups articulated as good components of health care (Table 4). The main difference between the two groups was the centrality of effective communication to people with autism in the provision of their health care and the importance of empathy to the patients with fertility problems. People with fertility problems valued staff who understood that their experience of infertility was not just about medical treatment, but that the possibility of not being able to have children can have a huge emotional and social impact.

It is a really sensitive area for some people, but I am sure it is a matter of showing just the same skills of empathy and understanding that you would for any other illness. You know it seems life-threatening probably for some people going through it, in the sense that it is their vision of their life that is being threatened.

IFT19, female, aged 36 years

It is not something that they have probably been taught to deal with, at least, on an emotional level or just to understand how important and difficult it is for someone going through this, instead of just being told, ‘Oh go and do this and to do, and go away it has not been long enough’. To actually understand what it means to someone.

IFT16, female, aged 34 years

The importance of being treated as a person rather than a number was also highlighted by the patients with fertility problems.

Remember it’s people . . . and the best doctors and health professionals will probably be the best at whatever field of medicine they’re in because they’re able to connect with somebody at another personal level and acknowledge how difficult it is, how emotionally tiring it is and how horrible it can be at times.

IFT34, male, aged 48 years

This was not articulated within the autism data. For people with autism, empathy was not important, or they did not say it was important. This is perhaps not surprising, given that the condition is characterised by difficulties in social communication. What was important to people with autism was having health-care professionals who understood the communication challenges associated with the condition and, for those people seeking a diagnosis, being listened to and taken seriously. The uncertainty around diagnosis of autism, particularly for women, meant that they valued GPs and health professionals who listened to their concerns and acted on them.

First of all we had to convince the psychiatrist to refer me, a consultant psychiatrist and she actually said she didn’t think I did have it because I was interacting too well [. . .] I was like really, really upset because I knew that, I know that I can.

AUA01b, female, aged 22 years, diagnosed age 21 years

The importance of being taken seriously related not only to the individual person with autism, but also to the condition itself, which was sometimes contested. One woman said that her GP told her she ‘didn’t believe in the condition [Asperger syndrome]’ (AUA06). The contested nature of autism was underpinned at the time of the interviews by discussions and controversy around the development of the Diagnostic and Statistical Manual of Mental Disorders and the planned removal of Asperger syndrome from the new edition.

The lack of knowledge about autism also affected ongoing interactions with health professionals, as people with autism can be very literal or have sensory issues around lighting or sound. With understanding, some situations – such as the distress caused to patients who might be told the doctor will be back ‘in 2 minutes’, and who would expect that to be the literal case – could be avoided. One young man, who was diagnosed with autism in childhood, also flagged up the importance of being listened to and supported by mental health services. There was a lack of integrated care between learning disability and mental health services that could cause people considerable difficulty. As one woman said:

You end up passed between the two which results in just confusion really.

AUA04, female, aged 28, diagnosed age 3 years

The knowledge and competence of health professionals was important to both groups of people. This component was not included in our list of core components, as we had categorised it as something that was a ‘given’ in health care, rather than ‘good’ practice. However, for both groups, feeling that the health professional understood their particular condition (autism or fertility problems) was important. As one man said about his interaction with his GP:

When I had to spell Asperger for him, I knew we weren’t going to get anywhere.

AUT10, male, aged 58, diagnosed age 51 years

For the patients with fertility problems, communication was also important, particularly with regard to being told bad news in a sensitive manner.

I never forget this, because this is the worst bit for me. They opened a book. The nurse was sitting there and she opened a book and it had all our details on, and it just had two lines through it. And it just had the word ‘cancelled’ written on it. And that was how I found out that our IVF [in vitro fertilisation] cycle wasn’t working. I was in the room on my own with the woman. And I was just devastated. I felt like she’d cancelled me.

IFT23, female, aged 41 years

Among the patients with fertility problems, support and signposting to further information was an integral component of good health care.

Our GP’s surgery was really good and very supportive. You know a couple of times I went and they were saying, ‘Well maybe we could explore this and explore that?’

IFT05, female, aged 40 years

This signposting appeared to be less important to the people with autism, many of whom were very comfortable searching for information online.

Ongoing support was important to the patients with fertility problems, especially after treatment failed, as often patients felt abandoned after a failed cycle. For the autism group, social care support was more relevant, as their needs were more social than health related.

You know, they’re all really trying desperately hard to make you pregnant, but there’s a lot of emotional stuff as well. And I think kind of being aware of that, accepting that and making sure that people are offered counselling, that people are given the support network information, that they are told where they can find things out is actually really important. Almost just as important as the rest of it, actually.

IFT04, female, aged 45 years

In summary, conducting a secondary analysis of two further conditions highlighted some condition-specific dimensions to what is considered good health care and made visible some important distinctions in people’s focus on what is important.

Sampling

Particular efforts were made to include participants who are usually considered seldom heard in research. The nature of the groups were informed through awareness of gaps in the HERG samples, our knowledge of marginalised groups and decided in discussion with the project steering group, in particular the patient and carer members. 59 Participants were recruited through our contacts in voluntary organisations, social media and our patient and carer members. Most of the participants were from pre-existing groups and so were familiar to each other. For example, the older people were recruited from a University of the Third Age (U3A) group, an organisation whose aims are the education and stimulation of retired members of the community. The learning disabled participants were all involved in a self-advocacy group; the young men were pupils at a South London secondary school. A few of the drug user participants knew each other.

Informed consent

Gatekeepers (chairpersons, group conveners, appropriate authorities) circulated an information sheet explaining what was involved in the study. All sessions started with an explanation about the purpose of the group and an opportunity to ask questions. The drug user agency, that helped recruit the drug user group, circulated flyers about the group in various locations including a supported housing initiative and a specialist GP surgery. With this group, we were not aware until the day how many people would participate.

The process of gaining informed consent varied between groups depending on the ability of participants to read, or speak, English. Most groups, including the migrant workers, could read and understand the information sheet, and sign the consent form. In the case of the learning disabled group, minor adaptations enabled participants to give consent.

Several of the Irish Travellers had poor reading and writing skills. We had thought that we would audio record individual consent; however, this proved unnecessary. The session was well resourced, with two researchers and four support staff to help with literacy issues throughout the session. We worked with participants to fill in biography forms, read out the information sheet and check orally for understanding, and then worked on a one-to-one basis with participants to explain the consent form before asking each person to sign or make their mark. It thus became clear at an early stage, without it being made an issue, which participants were comfortably literate. The difficulty in reading and writing was in contrast to the facility the group had with spoken language.

Participants were given £30 shop vouchers for their time, and travel expenses where relevant. Compensation is routinely offered in FGs and there is evidence that it helps to increase participation rates, while not affecting responses to subjective questions. 65,66 The groups were audio (or video) recorded with participants’ permission.

Focus group structure

Each group was held in a venue convenient to participants, as advised by the gatekeeper or personal contact. The groups ran for 90–120 minutes and were facilitated by different combinations of two members of the research team and, in two cases, with the support of the patient and carer members of the steering group. The facilitator guided the discussion, supported the group and aimed to create an environment in which participants felt comfortable and able to share insights and experiences.

The broad structure was:

1. introductions and a warm-up exercise

2. general brainstorming about what good health care looks like

3. small group work ordering and adding to the set of core components

4. discussion of reasons for selecting priorities and less important issues, prompted by the ordering exercise.

After the introductory session, we invited the group to talk about ‘what is important in your health care?’ writing up the points raised on a flip chart. Given the literacy issue in the Irish Traveller group, we read each point out and summarised key points orally at the end of the activity.

The brainstorming discussion, captured on a flip chart, was very much an open discussion. Participants were asked to describe what they thought was good health care and invited to provide examples to illustrate the points they made. The facilitator encouraged participation from all group members as much as possible and encouraged or challenged the groups about the points raised.

Small-group work

One of the tasks for the FGs involved a pair/small-group activity in which participants were asked to order a series of cards each containing one of the eight components of good care, with examples. Blank cards were included and we asked participants to add anything they felt was important that they did not feel was covered.

In designing the FG activities, we recognised the importance of flexibility and willingness to adapt activities before and during a session in response to the needs of the group. For example, in the Irish Traveller group, who had literacy problems, each small group had a facilitator to help with the task. Each of the core components on the cards was read out and discussed by participants and then allocated a position on the table to reflect its priority. We also modified the task for the learning disabled group. Given the small number of people in this group, we asked participants to work together as one group to order the cards. We produced easy-read versions of the components and, drawing inspiration from board games, we placed a sheet of flip-chart paper on the table, with emoticons used to indicate ‘very important’, ‘fairly important’ and ‘not so important’ rankings (Figure 2).

FIGURE 2.

The ordering exercise in the learning disabled group.

Participants chose a card and then, following discussion, placed it on the chart in terms of its relative importance in their own health care. With guidance from the facilitator and the use of the ‘board game’ approach, the group was able to reach a consensus on what was important to them in health care.

We prepared a set of illustrative video clips to show during the FGs. These were used in the group with learning disabilities (FG1) to generate discussion and, to a lesser extent, in FG2 (migrant workers with limited English) and FG6 (older adults). We decided it was either not appropriate (e.g. due to the language barrier) or unnecessary (because the discussion was going very well) to use the clips in FG3 (current or former drug users), FG4 (young men) and FG5 (Irish Travellers).

Finally, the small groups were asked to talk about what they thought of each component and explain why they thought that some were more important than others. During this, some participants changed their minds about a component and revised their ordering.

In addition to the six face-to-face FGs, we set up an online FG using Ning, a free online platform for creating social networks (Mode Media Corporation, Brisbane, CA, USA) (Figure 3).

FIGURE 3.

The online FG.

We used social media and personal contacts to recruit participants with LTCs to this group. The details were tweeted and shared via Facebook and the healthtalkonline website. Eleven people volunteered to take part. The webspace ‘Goodhealthcare’ contained a different forum for each candidate core component and was illustrated with a video clip. We invited participants to read the statement, watch the clip and then contribute to a discussion on whether or not that statement was important. Participants were encouraged to return to the webspace to respond to comments that had been left by others (Figure 4). The method allowed us to hear the views of those we could not reach through the FGs, because of the severity of either their own LTC or that of someone they cared for. The facilitator responded to comments and invited further response which generated richer detail. The site remained open for comments for a 6-week period, after which the responses were collated and analysed alongside the six other groups.

FIGURE 4.

Sample extract from the online FG.

Data analysis

A summary of each FG was produced, which included general reflections on the session, selected verbatim quotes and key points of interest that had emerged during discussion.

The data were analysed in two stages. Firstly, the relevant members of the research team watched the video (or, in the case of FG3, current or former drug users, and FG5, Irish Travellers, listened to the audio) together. Researchers made their own notes on each group, and after each, these observations were discussed and comparisons between the groups were noted. We considered whether or not and how the participants’ comments and stories suggested new core components, or could be subsumed under the original eight.

Secondly, these observations were added as notes to the summaries for each group. All summaries were imported into NVivo. Comments were coded according to the health-care setting to which they referred (generic, primary or secondary care), according to whether participants regarded the components as basic, good or aspirational care, and according to whether or not and how the functional, relational or systemic/organisational aspects of care were related.

Candidate component 1: ‘involving me in decisions about my care’

Related examples: my health concerns are taken seriously; health professionals help me to take care of my own health; when choosing a treatment, health professionals listen to what is most important to me.

Participants across groups were very clear that they wanted to be involved in decisions about their health care. However, preferences regarding the form such involvement should take, for example having clear explanations about the course of treatment or being asked to choose from different options according to personal values, varied greatly between participants and according to context.

People with learning disabilities (FG1) said that health professionals often steered them towards a particular treatment; this could feel caring and reassuring if done in the right way:

I had my varicose veins done, this doctor in [town], he turned round and said ‘If you were my daughter I’d like you to have it done’. I thought ‘oh my God’, I thought it was really nice.

People with learning disabilities FG1

Migrant workers with limited English (FG2) felt that respect for personal decisions and preferences were very important, particularly with regard to mental health and reproductive health. They perceived the UK as a place where there is choice and genuine concern for achieving good health outcomes. They compared this with their home countries, where they were sure that doctors made treatment recommendations (e.g. for a caesarean section rather than a vaginal delivery) for personal financial gain rather than for the best interests of the patient.

People with LTCs considered their active involvement in decision-making as central to the effectiveness of the treatment:

If I don’t want treatment (or it’s not explained to me) chances are that I am less likely to comply and take the medication/do the exercise etc as prescribed!

Online LTC group, FG7

However, they also acknowledged that not all patients might feel sufficiently equipped to take on an active role in decision-making:

I make treatment decisions in partnership with my doctors: but I am informed, (reasonably) intelligent, and like looking things up on the Internet! Not everyone does. Some patients prefer to have decisions made for them, and those patients also have to be catered for.

Online LTC group, FG7

Current and former drug users (FG3) stressed that part of this ‘involvement’ was that health professionals should listen to patients’ feedback about the treatment they had received.

Involve me in decisions not just for substance misuse but medications in general. They don’t listen to whether it’s working or not. Not just doctors and nurses but dentists too.

Stigma comes along as soon as you mention drug use.

Discussion between current and former drug users, FG3

A few participants in the current and former drug users (FG3) group knew a lot about drug interactions and gave accounts of occasions when health professionals had clearly known less than they did. This provided a strong rationale for the involvement to be a two-way partnership. However, others said that they had sufficient trust in their doctor’s competence to leave decisions about treatment alternatives to them.

If I’ve got faith in the doctor, I might not know what’s the best thing, I’ve got to have trust in the doctor. So it’s not as important.

Current and former drug users, FG3

A few of the young men (FG4) felt that the way in which their doctors involved them in decisions about their care affected their views on their GP’s competence. For example, they were unimpressed if the doctor looked the symptoms up during the consultation, which, as they pointed out, they would have done anyway before the consultation.

Candidate component 2: ‘having a friendly and caring attitude’

Related examples: health professionals are interested in me as a person.

Participants’ comments about this component unpicked the different ‘ingredients’ of empathy: warmth, eye contact, smiling, remembering personal things about the patient as well as respect, willingness to listen and taking concerns seriously. Discussions revealed interesting differences between groups and individual participants in the relative importance of the components.

People with learning disabilities (FG1), migrant workers with limited English (FG2), young ethnically diverse men (FG4) and Irish Travellers (FG5) linked a friendly attitude to ease of communication more generally. In particular, FG2 participants emphasised that a genuine desire to understand could help to overcome linguistic difficulties.

One participant from the older adults group (FG6) differentiated between knowing, trusting and liking the doctor:

I do trust my doctor but I don’t particularly like him as a person, but that’s fine – he does his job as a doctor in diagnosing me . . . Although he doesn’t support me but I am finding other sources of that support and information.

Older adults, FG6

Participants of the migrant workers with limited English (FG2) and young men (FG4) groups said that health professionals who made eye contact and greeted them with a welcoming smile had helped to put them at ease and to alleviate feelings of anxiety and insecurity when making first contact with health services. A friendly and caring attitude was important when interacting with reception staff, as well as with doctors and nurses.

Young men (FG4), older adults (FG6) and the online LTC group (FG7) raised concerns over increased ‘efficiency’ coming at the cost of empathy. Not being able to see the same health professional across consultations was seen as detrimental to developing relationships and undermining the possibility of truly personalised and ‘caring’ care.

I can’t imagine personal care like this, [remembering personal details] but would love it! The nurses when I’ve been in hospital have not been interested in you as a person at all, and are so busy that they don’t have time to have a chat with you. It would make you feel so much more cared for and therefore give you strength to manage if you felt that they were interested in you as a person.

Online LTC group, FG7

Candidate component 3: ‘having some understanding of how my life is affected’

Related examples: I am asked how my problem affects my work, my hobbies, and so on; health professionals think about my family and not just me.

Groups and individuals within groups attached very different meanings to this component; this variation may have been encouraged by the examples we gave.

People with learning disabilities (FG1), current and former drug users (FG3) and Irish Travellers (FG5) all emphasised that it was important for health professionals to be aware of the kinds of issues that they were likely to face, but were angry if health professionals made blanket assumptions and resorted to unhelpful stereotypes. They thought that good care should involve a consideration of the social contexts in which people lived (e.g. temporary housing), the social roles they performed (e.g. caring responsibilities) and any special support needs they might have (e.g. providing information to suit literacy).

The mention of ‘work and hobbies’ prompted some participants to suggest that this was a ‘frill’ and worth considering only once more basic needs had been met. As one former drug user commented:

Until you get your main core of problems worked out, you ain’t going to talk about jobs and hobbies. I have to think about whether my tent is going to get flooded and feeding my dog. Nothing like work and hobbies.

Current and former drug users, FG3

This view was echoed by participants in the migrant workers group, one of whom said:

How it affects me in my job is not so important: the main aim is to get better, not to stop working. So it’s the least important thing for me personally.

Migrant workers with limited English, FG2

People with LTCs (FG7) placed considerable importance on this component and described it as central to good care. Two participants from the migrant workers with limited English (FG2) group who had experience of LTCs also rated this component more highly than the other members of that group. Participants in FG7 thought that how their life was affected was part of a holistic care approach that treated people rather than numbers:

Perhaps it [questions about pain] should be related to your daily routine and how it is impacting on that. If I said I’m crippled and am struggling to walk/sleep then that should be enough, rather than being followed by the inevitable ‘on a scale of 1 to 10’ question.

Online LTC group, FG7

People with learning disabilities (FG1) thought that understanding the impact of a condition on patients’ lives was a feature of basic rather than good care – ‘it should come as second nature’ – but acknowledged that this was often not the case in practice. Similar to views expressed by migrant workers with limited English (FG2) and people with LTCs (FG7), FG1 participants thought that primary care clinicians had a tendency to focus on physical symptoms while being prone to overlook patients’ psychological well-being, and linked this tendency to shortened consultation times.

I think they’re too much on what they can see, rather than what you tell them.

He [her husband] doesn’t understand what’s she’s going through. And it’s actually caused her to get depression. She’s on the highest rate of painkillers, the highest rate you can. It is hard not to understand and the GPs should really understand all that but they don’t.

But what’s the point of telling ‘em because they can’t do nothing about it?

They don’t usually have the time. I mean how long are your appointments?

Five or 10 minutes.

Discussion among people with learning disabilities, FG1

Participants across groups talked more about the importance of health professionals’ understanding of the effect of illness on their own lives and less about the need to consider the impact on family members and their information and support needs. It is perhaps interesting to note that the individual interviews included more discussion of the impact on family members; the one-to-one interview gives participants more time to talk about their own illness and the effect on their family.

The young men (FG4) and older adults (FG6) made little reference to this component and, when asked to prioritise components, rated it at the bottom end. The migrant workers with limited English (FG2) and Irish Travellers (FG5) groups also rated the component among the least important.

Candidate component 4: ‘letting me see the same health professional’

Related examples: I see a health professional who I like and trust; I see a health professional who knows my medical history.

Prompt access to health services and continuity of relationship with a specific health professional can be difficult to achieve in service delivery. Participants talked about continuity in different health-care contexts.

Seeing the same health professional in primary care was particularly important to some members of the current and former drug users (FG3) group and to people with learning disabilities (FG1), who said that they often had to see a locum GP. If a locum was unfamiliar with their medical history, the participant had to use up precious time giving background explanations. Good care to them meant that GPs knew them sufficiently well to understand their history and the impact of an illness, and to help them make necessary arrangements as required:

My GP is very good because she helps me if I’m having problems with [husband’s name], she will get in touch with [care provider]. And she’s very good because she knows us. She knows our problems.

People with learning disabilities, FG1

For some of the current and former drug users (FG3), it was important to hold on to a GP with whom they felt they had established a relationship of trust:

I get a build-up of anxiety if I don’t get to see my doctor. There’s a general lack of respect. With my doctor, I feel that he listens to me, respects but I don’t get that off the other doctors, particularly the locums there.

Current and former drug users, FG3

Trust was seen as a two-way street, with doctors knowing patients well enough to trust their motives and not presume their presentation to be made for manipulative ends:

My doctor I’ve had him for years and he knows what I’m like. He knows I don’t blag [try to take advantage of] him. So if I ask him for something, nine times out of 10 he gives it me.

Current and former drug users, FG3

Participants in the migrant workers with limited English (FG2) group said that they appreciated it when a GP remembered them well enough to notice a change, such as weight loss.

Irish Travellers (FG5) and older adults (FG6) said that seeing the same health professional was more efficient (saving time and effort if doctors knew their medical history) and also increased their confidence. While continuity of relationship was seen as less important than continuity of care, there was some discussion in the Irish Travellers (FG5) group about whether or not the latter was achievable without the former.

I belong to a practice that’s a teaching practice and I can go on a Monday and see one doctor and explain my condition, go back on a Wednesday and see an entirely different doctor and have to go through everything again, same story again which is off-putting for me.

Irish Travellers, FG5

Some of the Irish Traveller participants (FG5) attributed poor patient care in hospital, such as leaving food out of the patients’ reach, to frequent turnover of staff and shift changes on hospital wards:

I think it’s because they move staff around a lot – people going on their break – nurses from other wards to cover – they don’t know those patients and their needs.

Irish Travellers, FG5

Another participant in this group pointed out that if the other components of good care are met then it is less important to see the same health professional.

The one that is the least important of our important pile and to the point where I’ve made a note about why that is, is ‘letting me see the same health professional’ because what we said was, if people are doing them and information is shared and people are caring and listening to me and trusting me then actually it’s not so important to see the same person all the time – didn’t we? That’s kind of our thinking on that one so.

Irish Travellers, FG5

They also highlighted special situations in which it might be important to have access to a known health professional for pastoral reasons, such as in the following case of the death of a patient who had to have an autopsy:

We couldn’t get hold of our local doctor and they sent a locum who didn’t know the patient – it just made it so upsetting for the parents – it could have been avoided if we could have contacted the doctor.

Irish Travellers, FG5

Participants in all of the groups, except the young men’s group (FG4), gave reasons why they thought that it was good to see the same health professional. People with LTCs said that continuity of the relationship helped health professionals to develop a more nuanced understanding about how patients’ lives were affected by a particular condition. They also made links between continuity of relationship with health professionals and the likelihood of being taken seriously:

If staff know you then that helps, as they know that when you go and ask you mean you need it!

Online LTC group, FG7

Seeing the same doctor in either primary or secondary care could save time and effort, increase trust and confidence and ensure continuity of treatment approach.

When the condition is long-term, rare and with a complicated medical history, this is great! Otherwise you spend the whole appointment explaining it all to them and not actually getting any further with treatment!

Online LTC group, FG7

Participants in the online group described the frequent turnover of hospital staff as counterproductive to forming empathic relationships.

. . . and when I’ve been in hospital and well enough then I have tried, but when you have a member of staff on duty followed by a new one, followed by a new one etc. it makes it impossible. They don’t have time to stand chatting with you even when you try.

Online LTC group, FG7

Being able to see the same health professional was rated as much less important by the young men. This group, most of whom had little experience of serious health problems, clearly valued prompt access over personal continuity:

If you want to be getting better, it’s not necessarily, if you have to wait a week to see the doctor who you saw a few months ago again, that might not be as good an option. It might be a better option seeing someone different, so then you can get the treatment as soon as possible.

Young men, FG4

That’s not important at all. If you want to see, if you’ve got an illness that bad, if you’ve got an illness and you want to see the same health professional, you’re not really ill, you just want to have a conversation with somebody.

Young men, FG4

Others in the young men’s (FG4) group pointed out that while there was comfort in seeing the familiar ‘family doctor’ they had known since they were children, in some circumstances they might prefer to see a health professional who was unknown to their family and who would treat them more as an independent young adult.

Candidate component 5: ‘guiding me through difficult conversations’

Related examples: I am told bad news with kindness and honesty; I feel at ease to ask about embarrassing things; health professionals help me to tell other people about my problem.

This component was rated as particularly important by migrant workers with limited English (FG2), current and former drug users (FG3) and young men (FG4). Migrant workers with limited English (FG2) relied on health professionals to ‘make an effort’ and have sufficient patience to try to understand their communicative intent in the face of linguistic difficulty. They also relied on health professionals to scaffold their illness accounts in ways that would enable the correct diagnosis to be made. Current and former drug users (FG3), as members of a stigmatised community, appreciated doctors who created a non-judgemental atmosphere and a relationship of trust that would enable mutual openness.

Young men (FG4) appreciated health professionals who put them at ease, reassured them that it was appropriate to be seeking help and asked questions that helped them to talk about potentially embarrassing issues:

Possibly someone that makes you feel at ease and confident about saying what your actual problems are . . . if you’re nervous and shy like.

Is part of that, that you feel okay describing what’s wrong?

Yeah like it’s not embarrassing for you to describe what you have . . .

Discussion between facilitator and participant, young men, FG4

Candidate component 6: ‘taking time to answer questions and explain things well’

Related examples: health professionals explain why I might have developed a problem; I am told what a treatment is supposed to do and what side effects it can have; I am told about the different steps involved in my care.

Participants across groups rated this component as very important. They saw getting sufficient and intelligible information about their illness and its treatment as essential. Having a good understanding about why a health problem occurred, what could be done to recover and/or prevent it happening in future and being prepared for potential side effects of treatment were all highly valued. However, brief appointments in hurried clinics made it difficult for GPs and hospital doctors to convey complex information and answer the patients’ questions.

Irish Travellers (FG5) and people with LTCs (FG7) said that clear explanations about treatment and side effects were necessary for an informed decision.

As patients we felt that every one of these [components] is important. Taking time to answer my questions and explain things well is really important – as [name of other participant] was saying he has medication that has lots of side effects but once it was explained to him he was able to make a choice.

Irish Travellers, FG5

Time to make a decision and being given enough information to make a fully informed decision, in terms of the likely outcome of the treatment and its success rates; the impact it might have on your life etc mean that you feel in control and therefore it is less frightening.

Online LTC group, FG7

Migrant workers with limited English (FG2) and young men (FG4) said that they struggled with medical jargon and appreciated it when health professionals were sufficiently flexible to adapt their explanations to a level that suited their needs. The young men said that they did not want this to result in the ‘dumbing down’ of information to the extent that it stopped being useful; this is a difficult balance, as one young man explained:

Recently, [um] like when I went to the GP, like sometimes they sort of treat you a bit like, in a bit of a stupid way, like they don’t give you, they sort of dumb it down for you when you want to know a bit more, in more detail, and in other cases they sort of do it in a more sort of, [um] like a more explained way. It might like slightly confuse you, like [um] recently when I went to the GP, [um] she started talking [um] in much more detail than any of my other GPs, so it was a bit confusing.

Young men, FG4

Our secondary analysis had suggested that providing information in a range of formats, including written notes, could be very helpful to patients as it allowed them to digest information at their own pace or to return to it at a later point. Some of the young men (FG4), all ‘digital natives’, felt that being given a leaflet or computer printout at the end of a primary care consultation was inadequate and could feel dismissive.

My GP [. . .] all they do is just print out the information and say ‘read this, it’s got everything about your sort of illness’, and if you, and when you do try to ask a question about, about it, they just say ‘oh don’t worry, it’s all on the information sheet’.

Young men, FG4

People with learning disabilities (FG1) rated importance of this component less highly than the other groups. They said that doctors tended to use complicated language and long words without explaining what they meant and that they felt that more use could be made of easy-read materials in primary care practice.

Candidate component 7: ‘pointing me towards further support’

Related examples: I am told about things like self-help groups, or benefits advice; I am told who to contact in case of unforeseen problems; I am told about other health professionals that can be helpful to me.

Groups varied considerably in terms of how much and what kind of signposting they expected from health professionals. They also varied in terms of perceptions about their personal responsibility to educate themselves about their health problem and awareness of the services and sources of support that might be available to them. Participants expected to find certain information for themselves; for example, the young men pointed out that before they went to see the doctor they would probably have looked up their symptoms and possibly also talked to their parents to decide if it was necessary to consult.

People with learning disabilities (FG1), migrant workers with limited English (FG2) and some of the Irish Travellers (FG5) said that receiving written materials or being asked to look up English-language websites would be of little use to them. However, advice on where to go for further information (such as sickness benefit) was appreciated.

Ethnically diverse young men (FG4) and people with LTCs (FG7) said that they welcomed their doctors supplying them with additional sources of information, as long as this was not seen as a way of avoiding questions during the consultation (see Candidate component 6: ‘taking time to answer questions and explain things well’). People with LTCs also valued being told about patient advocacy organisations and local support groups, and thought that it was important for the health professionals involved in their care to consider their information and support needs beyond the purely medical sphere.

My consultant doesn’t get involved in anything that’s not strictly medical, which is hard because being employment is good for my health! I wish they would have signposted me to the relevant charities – it would really help!

Online LTC group, FG7

Signposting to additional information was seen as an important part of encouraging patients’ ability to self-manage. Routine signposting to psychological support was also seen as important by this group:

I think they should provide us with the information to help us make healthy decisions, but at the end of the day we have to take some responsibility for our own health. I do think that they have responsibly for our mental health – especially when it is caused by physical health problems – they should signpost to counselling etc.

Online LTC group, FG7

While the young men (FG4) felt very much at home with using the internet for finding out health information, they felt uncertain about which sources of information could be trusted and thought that browsing web content in an unguided fashion might provoke additional anxieties. They therefore valued the reassurance provided by seeing a health professional in person:

The caring attitude and things like that, you’re not going to get that on Google are you?

Young men, FG4

Current and former drug users (FG3) had different views about whether or not health professionals should be the ones making sure that they had information. Some were already integrated into support networks through other services.

‘Cos of the way we are, we need extra support, whereas some places will be like here you are, take a tablet and see me next week.

You get that information elsewhere from other services like housing.

But I found out about [name] Housing actually when I was in rehab . . . but I never knew about it before . . . I’d be screwed without that.

Putting it [the component] last ‘cos other ones more important. When I was thinking of it, I was thinking you get that information all over the place.

Discussion between current and former drug users, FG3

Older adults (FG6) discussed the importance of signposting to additional support, mainly in terms of community-based services for older people and those with dementia and other specialist needs.

Candidate component 8: ‘efficient sharing of my health information across services’

Related examples: health professionals in different services are up to date about my health problem; I have a written record of what has happened to me, or a care plan.

The importance of this component was widely acknowledged across groups, even if it did not attract ‘top three’ ratings in any of them. Several participants pointed out that one would expect health professionals in different services to be up to date about their patients’ health status and that, therefore, this component should be regarded as a feature of basic rather than good care. The migrant workers with limited English group (FG2) said that the system of electronic health records in the NHS functioned very well and compared it positively with experiences of disjointed care in their home countries.

At least one participant in each of the other groups described instances in which things had gone wrong because vital information had not been communicated between services, between individual doctors and nurses or between hospital wards. Some of those with more experience of dealing with health services [e.g. the LTCs group (FG7) and older people (FG6)] suggested that the only way to make sure that important information was communicated was to do it oneself.

This drives me mad! I’m being seen by two consultants at two hospitals, for related but different issues, and there has been no communication between them due to the GP not passing information on. When I saw one of the Consultants last week I said that I was finding this very frustrating, as I have had to have several tests more than once (with each Consultant wanting them), and he is now going to write direct to the other consultant and just copy the GP in. It’s also really helpful to get copies of all the letters as you can then take things yourself.

Online LTC group, FG7

Confidentiality was raised by the migrant workers with limited English group (FG2); members explained that this was particularly appreciated because they had lived in other countries where this could not be taken for granted. The group of people with learning disabilities (FG1) also raised a concern that ‘efficient sharing of information across services’ might involve professionals gossiping inappropriately about their health and circumstances. This issue of confidentiality was not raised in the other groups, probably because it is a relatively taken-for-granted aspect of NHS care and unlikely to be seen as relevant to our remit.

Incorporating secondary analyses of qualitative evidence into NICE product development processes

The first element of the knowledge transfer intervention comprised five ‘cases’ based on secondary analysis of four HERG interview collections (Table 6).

In each case except one, secondary analyses of the HERG collections were conducted and the findings were considered as a formal part of the relevant NICE CG or QS development process. In the case of the type 1 diabetes CG, the NCGC investigator met with the clinical codirector of the NCC-WCH and, separately, with the NCC technical team. Having appraised the initial document, the codirector and the technical team informed the NCGC investigator that, although they were interested in the interview transcripts as a source of quotes, they would not require a more detailed secondary analysis.

Training for National Clinical Guideline Centre staff on qualitative research methods and synthesis

The second element of the knowledge transfer intervention comprised three training sessions for staff from the NCGC led by HERG staff during the first half of 2012. During the first 2-hour session, HERG staff invited participants to articulate their criticisms and concerns about qualitative research [so that the session could be built around these (see Appendix 10)]. Participants were introduced to both the ‘enhancement model’ (illustrated through discussion of a number of papers where qualitative research has aided the development of quantitative research) and the ‘difference model’, in which the qualitative research stands alone, but may also have potential to inform health care. The objectives of the second session were to discuss examples of what good qualitative research looks like, to describe commonly used approaches to qualitative research methods and to explore when it is appropriate to use them. The third and final session focused on combining the results of qualitative studies and was a more practical session than the preceding two. Attendees were introduced to the one sheet of paper (OSOP) approach and then applied that approach as a group activity, using migraine and chronic headache as an exemplar topic. 64 The centre had a CG in development on this topic that was using patient experience and the session used papers found in the evidence review.

Secondment to the National Clinical Guideline Centre

It was originally envisaged that the project’s senior researcher would be seconded to the NCGC on a part-time basis. The secondment was envisaged to include some training for NCGC staff; to accommodate NCGC needs, we arranged these training sessions during the early part of the project (see Training for NCGC staff on qualitative research methods and synthesis). The secondment did not take place as intended; we return to this point later (see Problems encountered and limitations).

The rationale for transferring knowledge between Health Experiences Research Group and NICE

Before presenting our findings relating to the ‘knowledge to action’ process, we first provide the reflections of key actors in that process on the original rationale for the project and why they believed it was worth undertaking. There were certain, albeit isolated, precedents for HERG staff and NICE to work together: for example, a HERG researcher working on a psychosis project had contributed, via a short secondment, to a guideline and a QS. As members of the NICE/NCC teams made clear, there was an element of opportunism underpinning the project which was perceived from the start as being exploratory in nature. The following quotes also underline the difficulties, for staff and team members, of distinguishing between the HERG archive, the HERG peer-reviewed publications and the topics included on the healthtalkonline website (we will come back to this in the discussion).

So I suppose the motivation [for the study] said, ‘Look, very much aware of the importance, or I should say much aware of the profile of the healthtalkonline work,’ it seemed reasonable I think to look at these as something that we could use within our programme in terms of their dataset, and I think looking at ways that that might possibly not only be a good way of improving the quality of our recommendations and making sure we make a difference, using their work, and also it might possibly allow us to think a little bit differently internally about how we prioritise in our areas.

NICE/NCC staff

. . . but if we can demonstrate that the information they have on healthtalkonline can usefully inform the work that we do then that could have some traction . . . I think that there’s such an obvious relationship between what healthtalkonline does and what NICE is trying to do, which ultimately is about improving patient care . . . There just seems to be such an obvious relationship and so, for me, it was really important this project happened as a way of trying to formalise that relationship in some way and if we can demonstrate that it can work, it might well be that it becomes more routine.

NICE/NCC staff

Given this exploratory nature, project team members were aware that a ‘trial and error’ approach was likely to be the most useful in terms of determining whether or not a more formal working relationship between NICE and HERG ought to be established in the longer term:

. . . [we want to] understand the processes whereby we might be able to work with NICE and how secondary analysis of our kind of material could be used to inform. And I suspect in some cases it will add nothing because there will be a really good synthesis of qualitative literature which will say everything that we could possibly say. And in other cases, where there isn’t appropriate literature, there is an opening but whether we can analyse and present and position ourselves such that in that process it really does add I think is a completely different question.

HERG staff

. . . when we understand more about what worked, how it worked, why it didn’t, what the challenges are of adding this type of . . . if as part of this project we could identify ways that our research group could work, so that we can more regularly feed into and help NICE on guidelines and Quality Standards.

HERG staff

In seeking to interpret our findings, it is also crucial to understand the NICE QS development process and the relationship between the CG and QS at the time of our fieldwork (see Figure 1).

It should be noted that the technical team for each guideline play a key role from the beginning of the process as they agree the protocol for the evidence reviews with the GDG and this protocol determines which evidence is relevant and should be presented to the GDG. Nonetheless, it was relatively late in the design of the project that the decision was made to include CGs within the scope of the collaboration:

So when we wrote the grant application it was much more focused initially on informing the quality standards, and then at quite a late stage of the grant application, we turned it into guidelines and quality standards which was largely because our NICE colleagues said, ‘Actually we don’t know where things are going to go with the quality standards, and it just would make it much more potentially useful to us to make it that you would feed into both’.

HERG staff

Despite this, even at the start of the project there were some doubts expressed by NICE/NCC staff as to whether or not it was worth trying to feed the HERG analyses into the later QS stage of the process (although the final NIHR study protocol did encompass both). We will return to this issue later in our findings and proposals for future collaborative work between HERG and NICE.

A final important contextual factor is that while the guidelines programme has an international reputation earned over several years and an established working process, the QS programme has recently been expanded as part of the coalition government’s reforms of the NHS; consequently, working processes, in particular how to develop the number of QSs now required, were still emergent, and how QSs will actually be used remains unclear. 12

the guidelines programme, its international reputation is just a very high quality stable product that’s worldwide recognised. The quality standards work is very much built into part of the coalition government’s reforms of the NHS. We still need more guidance on how these actually are to be used in the system, in the new NHS, and it may be that as we get more clarity on that the nature of the change in terms of their content, their structure. So they’re not a stable product.

NICE/NCC staff

Identify, review, select knowledge

Together, the HERG and NICE/NCC staff identified and selected the topic areas in which HERG should conduct a secondary analysis of their data. The potential choice of topics – in terms of overlap between NICE products and HERG interview collections – was much smaller than anticipated, especially taking into account the intention that the collaboration would deliver results within the term of the project:

So we had discussions with NICE about what was coming up over the next year/18 months of the project and at what stage we might be able to slot in, and we thought it would be a good thing to try slotting in at different stages for different purposes because we could learn more about how this was perceived, what was the best way of delivering it.

HERG staff

The rationale for the four HERG interview collections that were analysed was different. The secondary analysis of the interview data of the first health condition, MI, had the potential to feed into two separate CGs (see Table 6). Unlike the other conditions, the STEMI guideline was largely focused on technical aspects, and much of the development work had already been completed when the HERG analysis was made available to the GDG team:

. . . we came into midway, so the scoping had already been done, they’d already had some of the GDGs and there was not really an element of patient experience incorporated in the scoping stage, but we did hope to influence some of the review questions, somewhat, and just have some sort of influence in the process.

HERG staff member

The second health condition, asthma, was specifically chosen as one where the project could input with a high-level document at the start of QS development (i.e. to influence the scoping exercise) before providing a revised version of the analysis in line with the draft quality statements. The asthma QS was also chosen as one of the NICE products that might benefit, in part because, unusually, it was being informed not by a NICE guideline but by a BTS/SIGN guideline. 74 It was hoped that the HERG secondary analysis would influence the scoping exercise for the QS (which determines which standards might be included or omitted).

Within the constraints imposed by the lack of overlap between commissioned NICE products and the HERG archive, the final two conditions (type 1 diabetes in young people and RA) were purposively selected in order to further test this model by providing (1) a high-level report in advance of the scoping exercise, and (2) a more in-depth analysis focused solely on the key areas identified in the scope and in discussion with the technical team responsible for the delivery of the guideline. The RA QS was being developed from a CG which had included a review of the patient experience literature and followed established NICE processes.

Knowledge creation

The knowledge transfer process began with HERG staff creating the knowledge that was to be transferred to NICE (our five cases). This knowledge creation process comprised three phases which are summarised for each of the four HERG collections (Table 8). Further detail on each of these phases is provided, drawing largely on data from interviews with HERG staff.

Action cycle

The action cycle in respect of our five cases is summarised in Table 9.

Adapt to local context

It was challenging for the HERG team members to adapt to the ‘local context’ (the established NICE CG and QS development processes) in which they found themselves working to ‘transfer knowledge’ (the results of their secondary analyses). As the three quotations below illustrate, HERG staff were surprised, and sometimes frustrated, by the constrained nature of their involvement, the requirement to work within the established framework of NICE processes and code of conduct for participation in advisory group work. The code of practice includes the declaration of not only pecuniary interests but also non-pecuniary interests such as involvement in and authorship of research that is presented to advisory groups.

I thought we would have a lot more liberty. I think it does very much feel like they’ve got the system or process of working and we are very much slotting into that.

HERG staff

. . . if I’m completely honest . . . I think it was fairly obvious that unless we were able to work with the way that they [NICE] were going, we were going to have no impact at all, so we had to try and fit with their . . . I felt I was pushing the boundaries even just saying, ‘there’s a section on emotions’.

HERG staff

we are being sort of framed by what they think are the important issues; we’re presenting them with patient experience that is around the things they think are important. So I think within that framework they are giving it due attention but it’s not probably things that they hadn’t thought about before, for the most part.

HERG staff

For example, HERG staff could attend but not speak at the GDG or TEG meetings, where they were non-participant observers, typically sitting not around the meeting table with GDG or TEG members but at the side of the room, and not allowed hard copies of slides shown at the meetings: it was clear that they were external to the discussions. This came as something of a shock to some HERG staff attending their first meeting:

. . . I had understood I was going to be there and available to answer questions and maybe just give them five minutes on what I’d put in the report. And it wasn’t until I was sent a copy of the confidentiality agreement to sign . . . when I looked at what it said, and then realised that I was going to be an observer and not allowed to speak, that was the first I knew of that. So I think we’re an uncomfortable category that they don’t quite know what to do . . . You don’t want to criticise people for that, because it’s [NICE guideline programme] obviously been a very successful process that has meant that they’ve churned out the guidelines on time and to a high standard for many years, and what’s wrong with that. We also have a very rigid process for producing what we produce [. . .] But it does mean that they find it, I think, quite difficult to imagine how they could do anything differently or use evidence in a different way, or different types of evidence.

HERG staff

the fact that this piece of research I’d only literally just done, and it was hot off the press, was possibly going to have some influence. Then going up there and not being able to participate, and feeling as though it was minimal influence. But it was almost like a paper exercise that they’d included patient experience. That’s how it felt to me.

HERG staff member

Training for National Clinical Guideline Centre staff on qualitative research methods and synthesis

Results of online survey

A total of 17 NCGC staff responded to the online survey, representing approximately half of the total number of staff who attended at least one of the three sessions. Of the 17 respondents, 13 were among the 28 staff members who attended the January 2012 ‘Models of qualitative research’ session, 10 were among the 15 attendees at the February 2012 ‘Good practice in qualitative research and applications’ session and 10 attended the July 2012 ‘Practical session’. Six of the respondents identified themselves as a ‘research fellow’, four as a ‘senior research fellow/project manager’, four as a ‘senior reviewer’ or ‘reviewer’, and one each as an ‘operations director’, ‘information scientist’ or ‘guideline lead’.

When asked about their ‘knowledge of qualitative research’, eight stated that they had no previous training, six said that they had received some formal training as part of either a Masters or a Doctorate qualification, and three reported that they had experience of conducting at least one systematic qualitative review as part of their work at the NCGC. Twelve of the 17 respondents reported having used qualitative research findings in their work at NICE in 2012; five respondents had not done so.

Table 10 below summarises the survey findings relating to respondents’ general views as to the value of qualitative research findings in their work. Generally, staff could see the relevance of qualitative research findings for determining the importance of aspects of patient experience, but were less certain of their value in terms of their own work on CGs.

TABLE 10 - Respondents’ views of qualitative research evidence

Survey item	1 (low)	2	3	4	5 (high)	Mean
How do you personally rate the value of qualitative research findings in providing evidence of patients’ experiences of health issues?	0	0	1	2	14	4.76
Overall, how valuable do you think qualitative research findings are in the work you do at NCGC?	0	4	6	5	2	3.29
How do you think the NCGC as an organisation rates the value of qualitative research findings as a source of knowledge relative to randomised controlled trials?	2	6	1	6	1	2.88
How do you personally rate the value of qualitative research findings in providing evidence of the effects of treatment?	1	8	6	1	0	2.44

Figures 6–10 report the main findings from the survey relating to the training that was provided by HERG staff as part of the ‘knowledge transfer’ intervention. The style of teaching (see Figure 6) was positively rated (mean = 3.88); open comments included that the training was ‘extremely well planned, clearly explained and very well presented’ and ‘fantastic – very clear, very helpful’. As described further below, respondents also highlighted session three as being the most helpful of the training sessions.

FIGURE 6.

Responses to question: how would you rate the style of teaching in the HERG training session(s) you attended on qualitative research?

FIGURE 7.

Responses to question: how would you rate the relevance – for your own work at NCGC – of the content of the HERG training session(s) you attended on qualitative research?

FIGURE 8.

Responses to question: how much impact had the HERG training session(s) you attended on qualitative research had on your own work at NCGC?

FIGURE 9.

Responses to question: overall, how satisfied where you with the HERG training session(s) you attended on qualitative research?

FIGURE 10.

Responses to question: do you think there are any barriers to the greater use of qualitative research findings at NCGC?

The ‘relevance’ of the content of the HERG training sessions (see Figure 7) was rated less positively by respondents (mean = 3.13) but there was a clear distinction in respondents comments between, in particular, the first and third sessions:

the session I attended seemed too academic without much practical application

there did not seem to be an understanding of what NCGC work involved

the first two sessions weren’t particularly helpful

the practical session was very useful in that I now have a good approach to analysing qualitative research

It was good but we may not have the resources to do it in such a thorough way. We have to be specific about what we are looking for and find the balance between the purely academic research side of it and the guideline development work.

The impact of the training on respondents own work at the NCGC (see Figure 8) was also rated as relatively low (mean = 2.81). Two respondents reported that they had applied lessons learnt to qualitative reviews they had subsequently undertaken.

Despite reservations about the relevance and impact of the training, overall satisfaction with the HERG training sessions was high (mean = 3.68) (see Figure 9).

In addition to the findings presented in Figures 6–9, 11 out of 15 of respondents reported that the training was at a suitable level for them personally and eight out of 16 felt that the training covered the aspects of qualitative research that they wanted to learn about. Regarding perceived gaps in the training, the most common suggestion related to how to apply the training in the specific context of guideline development. Eight out of 16 respondents saw qualitative research findings playing a bigger role at NCGC in the future, while the remaining eight respondents saw them as playing the same role. We asked survey respondents to elaborate on what the potential role of qualitative research at NCGC might be, and open comments included the following:

Qualitative research is essential if guidelines are to be responsive to patient needs. At present the role of qualitative research at the NCGC is too small

With new service delivery commissions heading our way, the ability to effectively describe patient experience of services will be really important to our work

I think it is valuable information but we as the NCGC need to find a more efficient way of doing this. We need to try and adapt it to the way we have to do our work, e.g. be very specific in the protocol

It depends if key issues raised during scoping are best addressed by qualitative research and how many of these there are. It looks as though we are going to get more service related guidance. This may mean more issues are answered by qualitative reviews. However, this relies on NCGC technical staff being aware that issues can be answered by this type of research

Finally, most striking of all the survey findings, and most pertinent to this objective, 14 out of 15 respondents felt that there were barriers to the greater use of qualitative research findings at the NCGC (see Figure 10).

All of the respondents to this question provided further feedback in their open comments. Inductive analysis of these comments brought five particular issues to the surface that served as barriers to the greater use of qualitative research findings at the NCGC. These were:

• a lack of understanding of qualitative research methods:

  ‘what makes a good and bad qualitative study and how to effectively review these’ / ’quite intimidating to quantitatively oriented people like me (who represent 99% of the research fellows and health economists here) . . . often seem to be in a different language, and are rarely lucid’ / ’lack of understanding on the purpose of qualitative reviews and the areas they have strength compared to RCTs’ [randomised controlled trials]

• negative perceptions of qualitative research more generally:

  ‘not seen by GDG as robust evidence’/’Qualitative methods vary and the results are subjective’/’Perhaps well developed and tested questionnaires which have been validated would be acceptable forms of evidence for guidelines’

• a lack of time to consider qualitative research findings:

  ‘Time it takes to conduct a qualitative review (intervention reviews are often much quicker, especially if you have RCTs)’/’We work to tight deadline and it is very time consuming as the information is not always easy to find’/’Time constraints and how practical it is to pursue this route for a particular questions. Most guidelines will only have one question where there is the time and the where qualitative research is the most appropriate to answer the review question’/’Resource constraints are a barrier in the use of more qualitative research at NCGC; more resources would help’

• a lack of ‘felt need’:

  ‘The type of questions we ask often not answered by qualitative research’/’I think it depends on the questions that we are asking for the guideline. Most of our questions are not about patients’ experiences and so we tend to not look at qualitative reviews or material very often’

• insufficient training and guidance:

  ‘[in]ability to confidently use methods to identify, quality assure analyse data within time constraints’/’training on synthesis of qualitative findings keeping the context of guideline development in mind would be useful’/’have a guide on how to do a qualitative review and standardized template for the review’/’needs to be guidance on how qualitative issues can help answer questions. Currently, I think we automatically try and define issues as a quantitative clinical question. This may be the correct/best approach in most cases but we may go down this route as we have always used the quantitative method and we are not ‘in tune’ with qualitative research methods’/’Generally little training offered/available in this area so quality of reviews might not be as good. Output of qualitative reviews not very satisfactory. Often end up with generic common sense recommendations that aren’t specific to the condition’.

Regarding this last issue, the NICE guidelines manual in 2009 did not provide guidance on identifying qualitative evidence and although a revised version was imminent at the end of our fieldwork it was not anticipated that major changes would have been made. 11 Guidance on using patient experience to inform review questions and an appraisal checklist for reviewing qualitative studies of patient experience were provided.

The key points and conclusions arising from our findings in relation to objective 3 are presented in our discussion chapter (see Chapter 7).

Individual and subpopulation experiences

In our presentation, we did not describe the variety of health problems and experiences of the people in the FGs. The discussion turned to how these prior experiences influenced people’s ideas of what good care might look like, and what they might expect. As one workshop participant pointed out, ‘if we want to do better studies of experiences we do need to delve into what is the basis for their comments’. While we are used to comparing experiences with standard sociodemographic data such as age, gender and social class, there are many other, more pertinent factors that shape people’s experiences of care and their ideas about what they need. What any particular patient sees as important can vary enormously from one illness to the next, or at different points during the illness; recognition of what is important in care is, thus, context specific. However, we should be careful not to assume that everyone’s experience is purely individual and ignore patterning by group. For example, people who are homeless share some problems as a group as well as factors that are influenced by the individual. As one patient participant pointed out during the discussion, people who are victims of torture face both different and similar issues; these need to be understood as features of a shared experience as well as reflections of individual agency. The similarities between people who share the same identity, such as drug users or learning disability, combine with other characteristics that are shared with other sectors of the population and which also affect their experiences of care. Our findings have highlighted how inter-relational the different components of good health care can be, with implications for the design and use of generic measurement methods.

One member of the HERG research team drew attention to the differences between groups (e.g. between the older adults and the recent migrants) in their health system literacy, as well as health literacy (both of which are related to education and social class). For example, the older adults were able to use their knowledge, often gained from many years experience of their own care, as well as that of their parents, to talk about organisation and appropriate care.

The discussion turned to the misunderstandings that patients sometimes have about why staff are doing things, for example checking and rechecking a patient’s name. If the health professional does not explain the reasons behind this part of their safety protocol, it could alarm the patients by suggesting that the system is chaotic, prompting low ratings on PREMs.

Expectations, the fresh eye and service redesign

There are pros and cons in involving people who can bring a fresh perspective to service evaluation and redesign. In the interviews and FGs, it is evident that people expect health care to be safe and to see a health professional who is well trained and aware of the best treatments. The confidentiality of the consultation is taken for granted by those who have never had reason to expect it would be otherwise (this had become clear in the FG with migrant workers, who described non-confidential behaviours in another country). It is sometimes only when people have amounted considerable experience of health care that they start to realise the variation in skills and service provision and the lack of a clear evidence base for much treatment.

Members of the public who bring a fresh eye to services can challenge assumptions and bring new insights. Drawing on the FG with young men, who had had relatively little experience of hospital care, could contribute a perspective on service redesign that is relatively invisible to those who have been working in it, or using it, for many years.

One workshop participant described a qualitative study that she had been involved with in four hospitals where different staff members were asked to describe what good care looked like to them; this had found that there was little agreement across teams and roles (e.g. porters, ward clerks or medical staff).

One lay member of the group suggested that future research might ask ‘magic wand’ questions, for example ‘if you were going to design an A&E department, how would you do it?’.

Training health professionals

A workshop participant raised another idea about how the findings from the FG study could be used to improve health care: those involved in training clinical teams often struggle to challenge stereotypes and assumptions about the needs of patients from different population subgroups, and the material collected through the FGs could be very useful for training.

Implications for further research

It was suggested that we could compare the study findings against existing PREMs to check our impression that these findings with seldom heard groups do not challenge the current repertoire.

Some of the group felt that our discussion had underlined the ‘utter uselessness’ of trying to boil it all down to a single question (as in the Friends and Family Test).

We agreed that we need to know more about what is behind the ‘not applicable’ response on questionnaire surveys; ‘Exploring the Not Applicable’ seemed a potential title for a paper.

Finally, it was suggested that a different and potentially insightful set of interviews about what constitutes appropriate/good health care could be gained from interviewing health-care staff who were trained and practised under the ‘old system’; they would have, by now, had time to reflect on what went on in the past and have likely had a chance to make comparisons with current practice in primary care and hospitals, through either personal illness, or caring for children or partners, or acting as carers. Their insights are likely to throw up some different perspectives from those who have never been on the inside of health-care provision. Similarly, the views of health-care staff who have worked in different settings, for example locums, could add further insight and perspective.

What makes a suitable data set for secondary analysis?

This issue concerned the quality of the original interview material. Do any qualitative interviews constitute appropriate material? What is the minimal data set needed for contextual information, in terms of study and sample (purpose, participant demographics, settings, recruitment methods, geography) and interviewer details, to maximise value to future users?

Wherever possible, the secondary analyst should assess the original sample and any limitations with regard to the proposed study. In some cases, there may be a comparison group available (e.g. if studying gender and health).

Who owns the data?

When the research has been funded by a research grant this is usually quite clear: the funder, or the researcher’s employer, own the intellectual property in the research. Researchers may feel that the interviews should belong to the research participants who took part in an interview. In HERG studies, this is recognised through inviting interview participants to sign a copyright form and giving them the opportunity to edit sections of the interview. Interview participants may decide to withdraw from the research at a later point, or restrict the purposes for which the interview might be used. Data that are intended for sharing may require some special considerations, for example for consent and copyright.

The researchers who collect the data are also likely to feel some ownership of the data and may hope to be involved in writing papers based on the data. We agreed that the interests of the original researcher should be considered to support career development and not treat researchers (who may be relatively junior, or on short-term contracts) as mere ‘data collectors’.

The primary researcher

Researcher interviewers are coparticipants in the interview conversation. Sometimes, researchers may use self-disclosure as part of the interview process, and, therefore, their identity may need to be protected as part of the anonymisation process, or they might need to be offered the chance to edit their interview contributions before archiving. There is a potential tension between appropriate acknowledgement of the researcher’s role, providing relevant information about characteristics that are important to the context of the study data, and allowing them some influence over the data that are shared.

Some reservations were voiced about how the reuse of qualitative data sets by secondary analysts might impede on a primary researcher’s ability to publish on the same material in future. This concern linked to the issue of when was the best time to archive material – should researchers consider archiving data for sharing with colleagues even if there was a chance that they might want to return to the material themselves in their future work? One possible solution that was proposed was that, wherever possible, primary researchers should be invited to participate in secondary analyses of material that they had coproduced, and, especially, in the write-up of research outputs based on such material.

Best practice recommendations for sharing qualitative data in health services research

Workshop participants identified the UK data archive as a valuable resource for general recommendations and legal requirement on sharing social science data. Within this archive, the ESDS Qualidata online archive presents some helpful examples that can act as guides for best practice.

Aspects of data depositing for sharing and access for reuse covered on the UK data archive website include:

• research data lifecycle

• planning for sharing

• consent and ethics

• copyright

• documenting your data

• formatting your data

• storing your data

• strategies for centre.

Gaining participant consent for the future use of qualitative interview data

One frequent obstacle to the reuse of qualitative interview data is that participant consent places restrictions on who is allowed to access transcripts of material, even where they have been fully anonymised. Recontacting research participants to gain consent to share their data with other researchers at a later date can be very time-consuming and difficult, and may also be undesirable for ethical reasons. The best possible solution is, therefore, presented by a multilevel consent form, which specifies a number of options for participants to consent to possible future use of their material at the time of taking consent for the original study.

To facilitate fully informed consent, best practice might involve offering the participant the option of reviewing a copy of their interview (either as transcript or recording) so that they can indicate, edit or delete sections of the material that they do not want to be shared for future research purposes. In the experience of the HERG studies, around 10% of participants take this opportunity to remove some part of their interview at this stage.

Training needs of researchers planning to conduct secondary analysis

We agreed that while junior researchers might gain from being given examples of more experienced researchers’ interviews for analysis practice, learning to collect one’s own data is important for research skills development. Researchers needed to be aware of how the visceral experience of ‘having been there’ in the interview contributes to interpretation of the data. In addition, direct experience of conducting interviews was likely to sharpen awareness of the interview transcript as a recontextualisation of the original conversation and the contents of the interview as a coproduction between interviewer and research participant.

These insights have now been formalised into a 1-day training course to share resources and skills for secondary analysis of qualitative health research, as part of the HERG qualitative research course programme for 2013–14. An outline of the training day programme is included (see Appendix 14).

Why should we conduct qualitative secondary analysis for health services research and policy?

• It allows focus on a targeted analysis to inform health policy.

• It is desirable to ‘stand on shoulders’ of existing research (which might not have been published).

• It is efficient, especially if access and ethics for primary research raise complex issues.

• It avoids burdening over-researched groups.

• It may provide access to the perspectives of elusive groups or communities considered hard to engage.

• It can inform pilot studies; for example:

  • identifying item pools for questionnaire development

  • defining the parameters of a diversity sample.

• It can inform a richer, comparative analysis:

  • between health conditions

  • across time

  • between cultures.

Summary

The HERG archive and other UK-based archives and research collections offer a rich and highly cost-effective resource for health policy. Increasingly, as with studies which contribute to the HERG data archive, the potential for secondary analysis needs to be carefully considered from the outset, to ensure that respondents can give appropriate consent for reuse of the data.

The perspectives of researchers whose interviews may be used for secondary analysis have received little consideration in the literature. 30 Researchers in HERG know that the data they collect will be available, under licence, to other researchers. The original researcher has an opportunity to publish key findings first, is often involved as a consultant to a secondary analysis project and may contribute to the resulting papers. While the secondary analysis process can feel somewhat exposing, those in HERG whose data have been used by other researchers emphasise the benefits of approaching the interviews through a new analytical lens, the helpful challenge of a perspective that is more distant from the context of the original data collection and the opportunity to maximise the utility of data (especially if reuse may lead to improvements in services for the patient group).

In conclusion, it is important for policy to be evidence based and that patients’ experiences form a vital part of the evidence about health and social care services. Collecting new qualitative data on people’s experiences is not always achievable within financial or time constraints, yet their exclusion can silence or marginalise the patient voice. We argue for a pragmatic approach that develops appropriate archiving practices and analytic skills among qualitative researchers so that rigorously collected qualitative data sets can be used to establish patients’ perspectives at the centre of health policy.

The workshop has also informed a paper on qualitative secondary analysis as a resource for health policy research. 30

Staffing

We appointed a new senior researcher to this post but for personal reasons their situation changed and they were unable to take up the post. It took us some time to find a replacement, who joined the project for the last 9 months rather than for the entire 18 months as originally envisaged. Staffing has thus been rather more complex than we intended, but continuity through the project has been provided by Kristina Bennert (originally appointed for only 12 months, part-time, to conduct the secondary analysis but whose remit was later extended to the whole project), Angela Martin (project co-ordinator throughout) and Sue Ziebland, the principal investigator (who stepped into the senior research role for the first year, ran the training sessions and has continued to be closely involved in all stages including running FGs, contributing to the analysis and writing the papers and reports).

Lack of clarity about what a secondment might involve

We were not sure what would be the most useful role for a part-time embedded researcher at the NCGC. We therefore left some flexibility in the project staff planning so that if a suitable focus emerged during the course of the project we would be able to field staff accordingly. The subject of a secondment was raised regularly but we did not identify precisely what role might be performed. The technical teams within the NCGC were working on evidence reviews of qualitative evidence intermittently as dictated by individual guideline timelines and it was not feasible to plan these reviews to coincide with a secondment.

Timing for the dissemination of the findings

During the course of the project, we held regular meetings with the members of HERG and the NICE/NCGC colleagues, including three patient and carer members, at which emerging findings were discussed. Part of the proposed knowledge exchange work was for the researcher to present and discuss emerging results with other teams in NICE. As the HERG/King’s College London research team became more familiar with NICE culture and processes, we realised that there would likely be a more receptive audience for the results when the final results were complete and had been peer reviewed. The research team remain willing and able to communicate the results in whichever formats and forums (written, seminar presentations and workshops) are preferred.

Finally, and importantly for a project such as this, knowledge transfer should be a two-way process. NICE processes are well documented, yet total transparency of such a complex process is not possible and at least some organisational knowledge inevitably remains tacit, for example the relative independence of the technical teams/GDGs in deciding on evidence to inform the guidelines. This was not helped by the staffing configuration which meant that knowledge that might have been gained incrementally by a single researcher, especially if that researcher had been able to undertake the planned secondment, was instead distributed among several.

The nature and length of the guideline process means that key decisions about what is included are often made remote from GDG meetings. As a 18-month study, ours was too short to track alongside the entire process. We would recommend that any future work in this area should indentify in advance which NICE products to study and plan the start date and project timing accordingly. Taking a more ethnographic approach, with the researcher embedded within the NICE teams, would help to avoid some of the gaps in knowledge transfer that were evident in this study. There were benefits in working with several products at different stages over the course of the study (e.g. we have realised through trial and error that intervention is feasible only in the initial stages, i.e. during pre-scoping of the guideline) but the approach has highlighted some of the difficulties for knowledge transfer and underlines, hardly uniquely, the necessity for knowledge transfer to work in both directions.

Implications for future Health Experiences Research Group and NICE knowledge transfer

In terms of future collaboration, four key issues have emerged from our research. Central to all of them is the issue of how to design and present more persuasive ways of communicating the credibility of findings of targeted, secondary qualitative analyses as a ‘body of evidence’ which fits into existing NICE processes. The four issues are presented below in the form of a series of questions and proposed solutions.

Future training

In terms of any future training provision to NCGC staff, it was very clear from the survey responses that those attending found the third session by far the most useful (‘where we were shown how to pool themes’; ‘outlined how a synthesis of qualitative research may be done’; ‘application of qualitative methods to our work in guideline development’), whereas the first session was seen as the least useful part of the training (‘too basic’; ‘limited relevance . . . for guidelines work’; ‘very general’; ‘not so useful’; ‘far too long’).

In keeping with these findings, participants made the following recommendations for the design and content of future qualitative research courses for NCGC staff:

• less background information (about the context, methods and design of qualitative studies) and more about how to do a review

• how to identify sources of qualitative data, gather and interpret and provide some statement of quality

• expand on the last session and develop ideas on synthesis and presentation of evidence from qualitative studies

• real examples relevant to our work

• start with an issue raised in the scope of one of our guidelines, develop this into the kind of questions that can be asked (both qualitative and quantitative), focus on the methods used to answer the qualitative questions, and demonstrate how this might feed into a recommendation

• extend the practical session into a full day, with more time to work in facilitated groups to see how it is actually done.

Implications for the use of secondary analysis of qualitative data

Finally, we return to the observations in the commissioning brief about the potential for using secondary data sources for new research. There can be little doubt that the use of existing qualitative interviews allows the researcher to engage with a targeted analysis much sooner than would have been feasible if primary research was conducted. Even a relatively low-risk, qualitative interview study can take several months to clear with an ethics committee before the study can begin. To recruit and interview a national, diverse sample of around 40 people would typically take another 12–15 months before the analysis can get under way. 95 Being able to draw on an archive of 75 existing collections (each with around 40 interviews) is certainly quicker than collecting primary research and appears to be a good use of resources. Four initial collections were selected to correspond to NICE products that were in development and another two were used to test the reach of the core components – to gather these data alone might have taken 90 months of researchers’ time to collect (our project was designed to be only 18 months long, with one full-time and one part-time researcher). The achievement of objectives 1 and 2 in identifying and testing the core components of good care illustrates the efficiency of secondary analysis of qualitative interviews.

We also wanted to test whether or not these analyses could be used to inform the development of NICE guidelines and QSs. This part of the study highlighted some of the difficulties (anticipated in the commissioning brief) of working with secondary data. The fit is never likely to compare with data collected to address the precise purpose, and we found that, sometimes, the gap between a set of research interviews designed to elicit patients perspectives and experiences and the more precise focus of the NICE guidelines and QSs was simply too wide for the secondary analysis to contribute. Even when there were potentially useful findings, there were difficulties of timing (which we refer to above) and of the status of an unpublished secondary analysis in relation to peer-reviewed and published papers. As an organisation, NICE promote systematic identification of evidence that is publicly available, and a tailor-made secondary analysis has, therefore, an indeterminate status.

NICE guidelines and QSs staff do not rely on peer review; they also quality appraise any study before it is included as evidence. It is considered that when a data archive is mined, to provide ‘quickly and economically’ answers to a focused policy question, those who are being invited to use this new evidence (which may reinforce, supplement or even contradict what is already known) want reassurance that the secondary analysis has been well conducted on appropriate, relevant and unbiased data. We suggest that this particular aspect of fitness for purpose has received too little attention and may hamper the efficient use of secondary analyses intended to inform policy.

Objective 4

The lay people for objective 4 have all been involved in previous PROM research and are currently advising on the Models of Patient Experience study led by Ray Fitzpatrick. This study aims to develop new models for the collection and use of patient experience information in the NHS.

Dissemination

The three lay steering group members have provided insights and guidance on how best to present the research findings to health professionals, academics, the voluntary sector and others and have also suggested conferences and organisations who would have an interest in the research.

Presentations

Bennert K, Hislop J, Ryan S, Ziebland S. The tellability of good care: how do patients narrate their health service experiences? Oral presentation, BSA Medical Sociology Annual Conference, York, 11–13 September 2013.

Bennert L, Ryan S, Hislop J, Martin A, Ziebland S. Testing the reach of the core components of good quality care with ‘seldom heard’ groups. Poster presentation at ‘The many meanings of ‘quality’ in healthcare’, Cumberland Lodge, Windsor, 4 June 2013.

Hislop J, Ryan S. Enabling inclusion? Reflections on using focus groups with ‘seldom heard’ groups to explore views on good healthcare. Oral presentation, BSA Medical Sociology Annual Conference, York, 11–13 September 2013.

Locock L, Ziebland S. Using health experience narratives to improve care. Oral presentation, Royal College of General Practitioners annual conference, Glasgow, 3–6 October 2012.

Film montages and supportive text have been placed together in the ‘scrapbook’ section of www.healthtalkonline.org.

6.5.1 Assessing study quality

Studies about patient experience are likely to be qualitative studies or cross-sectional surveys. Qualitative studies should be assessed using the methodology checklist for qualitative studies (appendix H). It is important to consider which quality appraisal criteria from this checklist are likely to be the most important indicators of quality for the specific research question being addressed. These criteria may be helpful in guiding decisions about the overall quality of individual studies and whether to exclude certain studies, and when summarising and presenting the body of evidence for the research question about patient experience as a whole.

There is no methodology checklist for the quality appraisal of cross-sectional surveys. Such surveys should be assessed for the rigour of the process used to develop the questions and their relevance to the population under consideration, and for the existence of significant bias (for example, non-response bias).

6.5.2 Summarising and presenting results

A description of the quality of the evidence should be given, based on the quality appraisal criteria from appendix H that were considered to be the most important for the research question being addressed. If appropriate, the quality of the cross-sectional surveys included should also be summarised.

Consider presenting the quality assessment of included studies in tables (see table 1 in appendix H for an example). Methods to synthesise qualitative studies (for example, meta-ethnography) are evolving, but the routine use of such methods in guidelines is not currently recommended.

The narrative summary should be followed by a short evidence statement summarising what the evidence shows. Characteristics of data should be extracted to a standard template for inclusion in an evidence table (see appendix J4).

The process of seeking help

To help to avoid delays in admission, health information on MI should:

• emphasise the breadth of possible symptoms of MI, including that the presentation may be different in women

• educate about the range of possible causes for MI and the fact that it can occur in young, fit and physically active people with healthy lifestyles

• recognise that social embarrassment may lead some patients to normalise their symptoms or wait for them to pass even when they suspect a heart attack

• emphasise that delayed admission reduces treatment options and success.

When patients seek help for MI, health professionals and their gatekeepers need to:

• Be aware that many patients will use their local surgery and GP as the first port-of-call in an emergency.

  • Patients who seek help from their local surgery or GP risk additional delays in admission due to appointment waiting times and the risk of misdiagnoses.

• Be sensitive to the possibility that patients may understate symptoms.

  • Symptoms may not be those conventionally associated with heart attack; patients may lack knowledge and vocabulary to describe symptoms with confidence. Even patients who suspect a heart attack may be reluctant to self-diagnose out of respect for the medical authority and expertise of doctors.

• Understand why continuity of care is valued by patients.

  • Personal knowledge of patients and their circumstances can enable health professionals to spot emergencies beyond the factual information available at the time.

  • Some patients with a personal GP who had known them for some time reported that they had benefited from their GP’s clinical intuition and were admitted very quickly.

• Bear in mind that patients who live alone may be at particular risk of seeking help late.

  • Partners and family play a vital role in the process of seeking help. Most patients speak to a partner or family member before contacting a health professional, and, frequently, the decision to seek help is made and executed by a partner or family member.

Receiving the diagnosis

When communicating the diagnosis of MI, health professionals should:

• Be mindful that patients may attach very different meanings to diagnosis depending on their unique situation and level of understanding as well as their age and stage of life.

  • Many patients are initially very frightened and think that they might die. At the other extreme, patients with very mild symptoms and no pain may fail to appreciate the severity of MI, especially if they are able to return home very quickly.

• Aim to answer patients’ questions in a manner that conveys hope and empathy alongside medical accuracy.

  • Patients usually appreciate explicit and honest communication about their chances of survival, especially if they are brave enough to have asked the question.

• Offer to talk to the patient’s partner or family members about the diagnosis.

  • Answering their initial questions, recommending websites and other resources (and providing or directing towards emotional support if needed) helps to take pressure off the patient at a time when they are likely to feel very vulnerable.

• Be mindful that patients’ emotional response to diagnosis develops and changes over time.

  • Patients those who appear calm and as if they are coping well may nevertheless require psychological support at a later stage.

Experience of the hospital environment

Health professionals can make a positive difference to patients’ experience of the hospital environment by:

• Being aware that the technical equipment of the cardiac unit might be perceived as threatening by some patients.

  • Simple explanations and allowing patients access to objects or services (such as a mobile telephone) that give them a sense of normality in the unfamiliar environment helps to put patients at ease.

• Providing friendly gestures and words of encouragement.

  • Small things like a chat at the bedside or a cup of tea during the night can help greatly to alleviate anxiety.

• Taking time to explain diagnostic procedures, interventions and drug regimens.

  • Explaining treatment decisions to patients in more detail may provide an additional safeguard against mix-ups due to miscommunication and human error.

• Being observant about how patients may be affected by the presence and behaviours of other patients on the ward.

  • Witnessing and interacting with other MI patients on the ward can be a source of support but also a source of stress for patients, particularly when a fellow patient dies.

Information about diagnostic procedures, surgery and medication

To improve patients’ experience of treatment, health professionals should:

• Routinely provide information about risks, benefits and possible outcomes of treatments, and whether or not there are any alternative treatments.

  • Feeling well informed about what will or might happen can help to alleviate patient fears and uncertainty.

• Consider the possible effects that a patient’s surgery may have on their partner and children.

  • Procedures which last longer than expected can be very worrying for family and friends who are waiting for news. Be aware of their need for information and support.

• Make an effort to answer questions fully and check that explanations are provided at a level that the patient can understand.

• Make eye contact, avoid talking about patients in the third person in their presence and aim to create an atmosphere that allows for genuine dialogue.

• Be aware that patients’ information preferences may differ in terms of the amount of technical detail or actual procedures they want to know or see.

Preparation for discharge

When preparing patients for their return home from hospital health professionals should:

• Provide patients with a written, individualised debrief about what happened to them at the hospital.

  • This may be helpful especially if the care pathway involved complications and uncertainties about treatment alternatives. A better understanding of why they had a heart attack and what happened to them during hospital treatment may be important to help patients explain to family and others what has happened to them (thus improving public understanding about MI) in their emotional adjustment. (See also Part 6: the emotional impact of myocardial infarction for patients and their families. )

• Make sure patients feel confident about their medication regimen and have easy access to someone they can contact in case of problems or questions.

  • Side effects from medicines are not uncommon and are often unexpected. Lack of knowledge about possible side effects causes avoidable anxiety and can lead patients to stop taking their medicines without advice from a doctor.

• Provide opportunities for patients to self-administer sprays or other medications while they are still in hospital.

  • This may help to spot potential problems, especially with devices that are tricky to use, build patients’ confidence and prevent mishaps once they have returned home.

• Exploit opportunities for confidence building and setting up positive expectations for recovery while patients are in hospital.

  • What happens during the time spent in hospital can have an important influence on patients’ orientation to secondary prevention and their motivation to make necessary lifestyle changes once they have returned home.

• Consider the information and support needs of the patient’s partner.

  • Partners are likely to need reassurance about the range of activities which are safe for patients to engage in. Where possible, partners should be involved in rehabilitation and lifestyle advice. (See also Part 8: patients’ information and support needs in making lifestyle changes)

• Inform patients and their partners about peer support, locally and online.

• Be aware that patients of all ages may have their own caring responsibilities (for children, partners or even parents).

The emotional impact of myocardial infarction for patients and their families

When identifying the support needs of MI patients and their families, health professionals should:

• Be aware that some individuals may have a great need for repeated reassurance.

  • Patients describe the emotional aftermath of their MI as a severe loss of confidence; reassurance is needed especially in the first days and weeks after returning home.

• Explore patients’ and family members’ possible fears regarding a repeat MI.

  • Unaddressed, such fears may lead patients to avoid physical activities or things they previously enjoyed and lead to negative spiral of avoidance and low mood. (See also Part 7: regaining body confidence: patients’ experiences of physical rehabilitation)

• Prepare patients and their partners about the possible emotional impact of MI on the relationship.

  • Partners and patients may need to be prepared to cope with tensions, short tempers and frustrations due to a combination of anxiety, reactions to treatment and partners who might be perceived as ‘overworrying’.

• Offer reassurance and advice to both partners on the safety of sexual activity.

  • Alongside information, some patients may also need emotional support to rebuild their sexual confidence.

• Ensure that patients’ emotional support needs are routinely assessed as part of their follow-up care.

  • Some patients may need professional psychological support that goes beyond the scope of what health professionals or peer-support groups can provide.

Key questions

What is happening to me?

Could this be a heart attack?

Could someone like me have a heart attack?

Where should I seek help?

Key emotions

Fear, embarrassment, uncertainty.

When experiencing symptoms of MI, patients may delay seeking medical help for a number of reasons:

One main and well-researched reason is misattribution of symptoms: if the experienced symptoms do not fit the patient’s idea of ‘a typical heart attack’ – usually imagined as a sudden-onset severe pain in the left side of the arm and upper body – they may find alternative explanations, such as indigestion or back pain, and wait for symptoms to pass. 96 Women, younger people and those with active lifestyles are especially unlikely to consider themselves as possible candidates for MI.

In this study, only one-third of the patients suspected that their symptoms might be related to heart trouble (Figure 11). Many others ‘normalised’ their symptoms and hoped that they might disappear again given time. (In a few cases, this actually happened and patients only learned weeks or months later that they had previously experienced a ‘silent MI’.) One man told how he ‘tested’ himself for MI by running up and down the stairs and was falsely reassured when this did not affect his symptoms.

I didn’t actually suspect there was anything wrong with my heart; I thought I had a backache, a back problem. [. . .] I was still playing football on a Saturday and I used to get some pain during that but it was across my shoulders and up here, and I’d always – you know you see the films and people have heart attacks, clutch their chest, or their breast and fall to the floor. So looking back I don’t really know whether I really did think there might be a problem and that I’ve just chosen to forget it. Because I do remember at work running up the stairs to see if it got worse because I knew [laughs], I knew that would bring something on and then when it didn’t, I thought, ‘well I must be all right then, it must be my back’.

HA11, male, MI in 1999 aged 42 years

FIGURE 11.

Recognising the symptoms of MI. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (square = diagnosed aged ≤ 40 years; pentagon = diagnosed aged 41–50 years; hexagon = diagnosed aged 51–60 years; heptagon = diagnosed aged 61–70 years; octagon = diagnosed aged 71 years and older). Participant marital status: without shadow = single; with shadow = married or cohabiting. Participant ethnicity: white number = white British; black number = black and ethnic minority background.

One woman dismissed the possibility of MI because the pain she felt was on the right rather than the left side of her body.

[My husband] and got me some indigestion tablets. It didn’t work. I took a [pain killer] tablet which usually knocks me out. No. So all night I was up with this pain, on and off and he was rubbing my back, and he kept saying to me ‘Are you sure you’re not having a heart attack?’ And I said ‘No, it’s the wrong side’.

HA03, female, MI 1998 aged 53 years

There is a considerable literature about delays in help-seeking, and normalisation and symptom misattribution have been well documented in previous qualitative work. 97

While improved public education about the breadth of possible symptoms of MI and the fact that a broad range of people can be at risk may be helpful, symptom recognition is only one of the factors that accounts for delays in help-seeking. 98 Alongside uncertainties about what a heart attack can feel like, another reason why patients delay seeking help promptly is acute social embarrassment. Having a heart attack constitutes a highly disruptive social event which renders the person experiencing it in the role of a helpless victim. In this study, several patients, all male, said that they had delayed seeking help because they did not want to ‘make a fuss’. The following quote is from a man who described his reluctance to call an ambulance to his holiday hotel.

I suppose in the back of my mind I thought, ‘well, this could be a heart attack but surely it’s worse than that’. Like I said about Rowan Atkinson, that was all I knew about heart attacks. [. . .] So [my wife] said, ‘We’re going to phone NHS Direct. [. . .] After I described the symptoms she said, ‘it sounds to me as if you’ve had a heart attack’, I said, ‘no, no I haven’t, I couldn’t possibly have had a heart attack’ [. . .] and she said ‘I think you better dial 999,’ I said ‘well I’m certainly not doing that’. [. . .] The commotion, the commotion of it and thinking, it was a small guest house type of hotel and you know I could imagine the lights flashing because it was a busy road and there was ambulances flashing all the time you know. It was the drama of it and I didn’t feel it was that bad to be honest. So I left it and [um] slept a bit I suppose and next morning we were going home anyway.

HA14, male, MI in 2003 aged 51 years

Gender differences in seeking help for MI are well documented in previous qualitative research99–101 and interventions to promote prompt help-seeking for MI need to take account of this. Both men and women delay seeking help, but for different reasons. Qualitative research has also explored other gender-specific factors that may delay hospital admission. 33,102,103 Women are more likely to experience atypical symptoms, and are at greater risk of being misdiagnosed. Women may also be taken less seriously by health professionals due to less assertive self-presentation in medical encounters.

One woman told how she was repeatedly admitted to hospital but then discharged without intervention because her electrocardiograms (ECGs) and blood tests appeared normal. She had an angiogram only after her third admission and then promptly received surgery.

And then when I think we went back a third time and went all through the casualty admissions again that there were a set of doctors who were still not prepared to do very much. Then one doctor came along, and I will thank him for the rest of my life, and insisted that three times was too much. And actually he was the one who pushed further in to the problem. [. . .] So I did feel that I wished they’d have listened to me a little more. I felt that three times was enough for them to listen to me. I knew in my heart there was something wrong, oh, that’s a pun isn’t it [laughs]. It just seems as if the nurses were more aware of actual people’s feelings and more aware of what was going on with me.

HA22, female, MI in 2003 aged 63 years

The decision to seek help is a complex and incremental process and the event of an ‘emergency’ is coconstructed by multiple audiences rather than arrived at by the patient in isolation. 104 Partners (or in some cases other family members or coworkers) were described as having played a major role in encouraging the patient to seek help for initial symptoms. Some patients were unaware that delayed admission is likely to result in reduced treatment options and decreased treatment success. Partners frequently pushed their symptomatic spouse to seek medical help or made a call to the GP or emergency service at their own initiative.

Had my tea, didn’t feel well. Went in to the front room. Chest pains started and my arm started the pain and then my wife who was a nurse sort of said to me, ‘lift up your arm over your head’ and ‘did that relieve it?’ ‘No, pain was getting worse’. So I made my way upstairs. Got ready for bed and by that time I got to the bed, my wife had phoned for an ambulance and. I was taken in to [the local hospital].

HA06, male, MI in 1996 aged 70 years

Some patients specifically instructed their partner to call for help, thus effectively relying on someone else to make the case for an emergency response on their behalf. Patients who live alone and do not have this option and support might be at particular risk of delay in getting help.

In this interview study, few patients and spouses directly called for an ambulance. Even in cases where patients themselves suspected MI, several still chose to consult a GP first (Figure 12, yellow-bordered). Some patients who sought help from their local surgery or GP experienced additional delays due to appointment waiting times and the risk of misdiagnoses (see Figure 12, red-bordered).

FIGURE 12.

Delays in hospital admission. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (square = diagnosed aged ≤ 40 years; pentagon = diagnosed aged 41–50 years; hexagon = diagnosed aged 51–60 years; heptagon = diagnosed aged 61–70 years; octagon = diagnosed aged ≥ 71 years). Participant marital status: without shadow = single; with shadow = married or cohabiting. Participant ethnicity: white number = white British; black number = black and ethnic minority background.

Patients whose GPs knew them well sometimes felt that knowledge of their general health, typical health behaviour and personality had helped the GP to realise that that something could be seriously wrong. In the following account, the GP had picked up that the man’s wife was very worried when they spoke on the phone.

One morning [I was] waking up and just not feeling well at all and of course my wife has always been a person who could recognise when I wasn’t well and she said, ‘You’re not well?’ I says, ‘No’. She says, ‘I’ll get the doctor’. And that was the occasion when the doctor came, dropped everything at his surgery, was in the middle of surgery and came straight round. But in the meantime he’d alerted the paramedics because he did say, ‘that he’d recognised in her voice that there was something seriously wrong’. He got here, the paramedics virtually followed him and they took me in to hospital again.

HA20, male, MI in 2000 aged 66 years

Patients may struggle to accurately describe their symptoms or may understate their impact. People staffing telephone helplines, receptionists and GPs may need to listen to and question patients very carefully to identify when something is seriously wrong. A man who was admitted several days after his initial MI felt that his symptoms were not taken seriously by an unfamiliar GP.

I do appreciate the difficulties that GPs face and that my own case was particularly deceptive, but [. . .] I still think I should have been referred to hospital as a matter of urgency. If a doctor is presented with a sixty-something life-long smoker, not long retired from a responsible and stressful occupation, who seldom attends the surgery and is obviously very concerned about the kind of pain which shouts ‘heart attack’, then, even though other diagnostic features may conflict, he should be given the benefit of the doubt. [. . .] The common cab rank system in larger group surgeries militates against a doctor getting to know patients. Until he retired, I saw the same doctor very infrequently over about twenty years. I am confident that he would have taken me seriously had he still been in practice. I suppose my experience is exceptional, but I do wonder how many people who are referred to hospital expire before their first consultation. I have now moved to another practice and no longer see this doctor.

HA04, male, had MI in 2002 aged 62 years

Symptoms may not be those conventionally associated with heart attack; patients may lack the knowledge and vocabulary to describe symptoms with confidence. Even those who suspect a heart attack may be reluctant to self-diagnose and instead trust that health professionals will recognise the need for urgent action. One woman who said that she had initially suspected that she might be having a heart attack was reassured when, after describing her symptoms, the receptionist gave her a regular GP appointment.

[My ex-husband] came and I told him and he said, ‘Well, phone the doctor straight away’. So I did and I spoke to the triage nurse and she said, ‘Come in at half past eleven’. This was about half past eight in the morning because there weren’t any appointments. She did ask me to describe the symptoms and everything but obviously they weren’t bad and I didn’t have the crushing pain or anything. I just thought, ‘oh I’m going to have [a heart attack]’. But when she said, ‘Come at half eleven’, I thought, ‘oh I must be alright then’. So I went at half eleven and saw the doctor and he said, ‘I think you’d better go down to the hospital. It’ll be quicker if you’re husband takes you, rather than me calling an ambulance’. [. . .] So I went to the hospital and [um] they admitted me. [. . .] When I spoke to the triage nurse, she did ask me what I would consider the right questions. But whether I gave the wrong answer, I don’t know, I could only tell her what I felt and she obviously felt that it didn’t sound serious enough because to me, it didn’t feel serious enough, other than I did say, ‘I felt funny and I’d never felt that before’. And I think your instinct tells you, this is something you’d never had before. I knew I hadn’t had it before. I knew I’d had indigestion before. But she obviously – she misinterpreted what I was saying, I would say.

HA32, female, MI in 2003 aged 53 years

In another example, a woman in her thirties kept seeking help for 5 months because she was concerned about her irregular heartbeat. She was diagnosed with panic attacks before eventually being admitted for MI. The repeated experience of being told her symptoms were imagined made her doubt herself and caused conflict in her relationship as well as shaking her trust in the medical profession.

I never had an ECG done until I had, the day I had the heart attack, never [. . .] I felt like I was, I knew I wasn’t going mad but they made me feel like I was. They made me feel like I wasn’t normal, you know, and I was thinking, ‘God, why do I keep thinking like this?’ You know, thinking that there was something wrong with the way I was thinking because I was being told there was nothing wrong and then I was thinking, well, to me it feels like there’s something wrong. So I felt, I felt hurt, you know, that, and the day when they give me the, the tablets to like calm me down and so when I, I came home and showed my partner those tablets, you know, he started saying to me, ‘you see, they think you’re mad, you know, you’re imagining it. You’ve got to calm down and stop worrying about it and stop freaking out about it because there’s nothing wrong’. So, you know, that, so it’s not only you haven’t got, it’s like everybody’s against you, you know, you feel like no-one’s taking you seriously. [. . .] But I knew there was something wrong.

HA33, female, MI in 2003 aged 36 years

Key questions

Am I going to die?

Why me? Is this my fault?

If I survive, is my life as I know it over now?

Is there any point in making changes to my life or is it hopeless?

Key emotions

Anxiety, shock, denial, despair, disbelief.

Myocardial infarction can be an extremely frightening and life-threatening event, and many patients initially think that they might die.

I was just lying there and they’d given me a lot of morphine so I wasn’t really aware of things going on around me. All I kept saying to people, like ‘can you help me, can you help me?’ I said. And when the doctor come, at first he said, ‘I think it could be pleurisy’, and I was going, ‘oh no, it’s not pleurisy’. But when, actually another doctor come after that and then she told me, ‘Yes, you’re having a heart attack, [name]. We need to get you to coronary care’. And I was going, ‘Am I going to die? Am I going to die?’

HA03, female, MI in 1998 aged 53 years

Before their MI, many said that their understanding of what happens during a heart attack had been very limited, but that the words carried a sense of dread and, if not death, certainly an end to the kind of lives they had led until then. One woman recalled how, after an ECG, her GP told her that she had experienced a silent MI 5 months previously; she felt ill prepared and shocked by the diagnosis.

It was a huge shock. I remember saying to the doctor, I said ‘Do you realise you’ve just given me a death sentence’. And she was ever so sweet. I was, wasn’t very nice to her, I must be honest, because it was such a shock but there we are. [. . .] I burst into tears. She cried because I cried. She was very, very sweet. She gave me a box of tissues and all that. I just couldn’t speak. I felt as though the bottom had dropped out of my world and that I was going to die the next day. I thought she was going to send me to hospital, which immediately panicked me but she didn’t. There’s no way to describe really how I felt apart from being absolutely devastated.

HA01, female, MI in 2003 aged 62 years

One man said that receiving the diagnosis made him feel even worse than he did before he knew what was wrong.

[At] that time I don’t know this heart attack, but the words ‘heart attack’ that’s very heavy words, you know. Everybody is scared. Before I heard this word I was feeling better, but when the doctors told me that, ‘you’ve had a heart attack and you are a heart patient’ and after that my feeling was not better. Because life [is] falling down, you know. You cannot run, you cannot eat of your choice. You cannot work of your choice, like this, like this, you know. Life [is] very badly disturbed.

HA25, male, MI in 2001 aged 49 years

Other patients described themselves as responding more calmly but experienced similar feelings about the threat of dying and the loss of their previous life.

I suppose it was perfectly typical feelings of shock, and of regret that it happened so soon, or that my life was coming to a completely different phase and that I would be disabled as it were for the rest of my life, however long that would be.

HA09, male, MI in 1995 aged 69 years

At the other extreme, patients with very mild symptoms and no pain may fail to appreciate the severity of MI, especially if they are able to return home very quickly. Health professionals should gauge the patient’s view of the severity of their MI so that they can appropriately reinforce the importance of secondary prevention before discharge (see also Preparation for discharge).

I did not feel ill [when I was admitted]. I knew that at that stage I did not feel capable of doing things that I would’ve been capable of doing beforehand but I could wander quite happily around the hospital without feeling out of breath, without feeling the need to sit down. And I suppose the seriousness of what I had suffered just wasn’t evident to me.

HA10, male, MI in 2003 aged 63 years

I found the second attack much more of a pull up, I did take heed of that one. And the fact that I had a really good GP as well, who calls a spade a spade, he doesn’t go around corners, who said, ‘you have two choices,’ he said, ‘you can go back to work and you can die or you can seek medical retirement and hopefully continue a good standard of life’. So I took notice of him as well. I found it very depressing realising that I was not immortal, but as I say we fought through that and came out of the other end, which was wonderful.

HA08, male, mild MI in 1989 aged 40 years and more severe MI in 2001

Patients usually appreciate explicit and honest communication about their chances of survival, especially if they are brave enough to have asked the question. Conscious of the pressures under which health professionals operate, patients sometimes acknowledged that talking about the possibility of death is a difficult conversation to have for doctors and nurses, too.

Some of them, there are one or two who’ve been very good and sat down and explained stuff to me but most of them aren’t too keen, I think that’s mainly a time issue and some of it’s about it’s because they don’t normally do it, there’s a training, there would be a training issue there. But yes, I must admit it’d be a difficult conversation to have with people, because if you know they’re not going to live very long or they’re likely to suffer, would you be the one that’d want to tell them that?

HA05, male MI in 2001 aged 57 years

Patients’ accounts of receiving the diagnosis illustrate some of the aspects of health professionals’ communication style that they experienced as helpful or less helpful. One man spoke very positively about the clear explanations he had received from the consultant straight after his admission to hospital.

A lot of things then happened very quickly. But one of the things that needed to happen I think, was for the consultant to explain (a) what had happened to me but (b) what was required. What he said was that I had had a heart attack and the next few hours were crucial and what was really important, if possible, was to try and attack the clot that would be in my, the part of the heart that the clot would be in. You know I’m not physiologically terribly well-tuned, I’m afraid. He explained – I mean I was very impressed actually because he squatted down and spoke to me at my level. He explained that there were risks attached to this process [. . .] Every intervention was explained to me. [. . .] And, you know, what was very clearly being stated was that, you know, this was the crucial time, you know, that if they were able to intervene successfully now, then my long term prospects of survival, because I mean, I think there was an explicitness that I wouldn’t necessarily survive. My long term prospects of survival and indeed full recovery, were very importantly conditional upon that.

HA02, male, MI in 2003 aged 54 years

Another woman found it reassuring not only to be prepared for the technicalities of the treatment but also to be told that it was normal to feel tearful and emotional.

As soon as I was there [in hospital] they explained to me I was going to be tearful, it’s a big thing, and they explained all my feelings I was going to have. I’m going to do a lot of crying and they explained that they’re going to put this drug in me to get rid of the clot and everything, they just explained every inch of the way what was happening and how I was going to feel. And they was right, everything they said, they was right and they was there, I mean in the night when I was frightened, they was standing at the side of my bed in the middle of night talking to me for an hour or two. They was absolutely brilliant, they was there answering any question.

HA03, female, MI in 1998 aged 53 years

People in the study described feeling reassured by the calm and professional manner in which health professionals had explained the risks and possible consequences of the planned interventions. Patients value health professionals who manage to convey hope and empathy alongside medical accuracy.

Everybody was perfectly civil and, and answered my questions. [. . .] And when the big cheese came in to the ward and I asked him about my prognosis, he smiled and he said, ‘well look,’ he said, ‘you’re here, you’re asking the question. Forty per cent of people who have their first heart attack don’t live to see the day, the next day. So you’ve survived,’ he said, ‘and it appears you’ve survived the previous one as well’. So that was extremely helpful.

HA09, male, MI in 1995 aged 69 years

However, another man described a less positive encounter; he and his wife had nicknamed a certain consultant ‘Dr Death’ due to his brusque manner when describing the possible risks of bypass surgery.

[The consultant] he also wasn’t convinced I’d actually make it through the, the coronary artery bypass. He was surprised that I’d actually made it through that, so like he’s not the sort of guy you want on a football team to gee you up before a game, ‘Hey lads if you keep it down to 10, you’ll do well’. [laughter] He’s not one of those that you want on your team. I think he’s probably going to think he’s trying to give it like it could be, but he probably overdoes how bad it could be. You don’t want an over realistic view but similarly you don’t want to be told that just ‘Well, no it, you could be dead’, because I think everybody knows if it’s heart, you know, if it’s a serious heart problem, yes of course you could be dead, you wouldn’t be here otherwise, [he] just slightly overplayed it.

HA05, male, MI in 2003 aged 37 years

Patients may respond to a diagnosis of MI in very different ways. Health professionals should be mindful of the different meanings the diagnosis can carry depending on the patient’s unique situation, as well as more evident factors such as their age and stage of life. One older woman said that her overwhelming response to receiving the diagnosis was gratitude to still be alive.

I was really pleased I was here you see because lots of people die in the middle of a heart attack. You ask me how I felt, well I felt pleased to be here, still be alive. I think that’s the main thing, I thought ‘well I got over that one and if there’s any more I’m going to get over that’. And as the doctor said an operation could put it right, which it did. It’s strange, it’s a lot to do with the mind, how you tell yourself how you feel.

HA15, female, heart attack in 2000, aged 81 years

HA09 (quoted above) was also aware, because his doctor told him, that he was one of the lucky ones to have survived a first heart attack. However, many of the younger patients felt anger, shock and disbelief to have had a heart attack. Now that many people do not have children until they are in their late twenties and thirties, it is not uncommon for people in their 40s and 50s to still have dependent children at home. Patients may worry about financial and career implications for themselves and their families. They may have different expectations about length and level of recovery than retired patients in their seventies or eighties, although many older patients may also have caring responsibilities. Younger patients talked about a sense of disbelief and the perception that heart attacks were something they associated with their parents’ generation.

I was petrified. Well, part petrified and part believing that they must have it – it must be wrong, you know, I was in the pub yesterday. This all happened on Saturday, I was in the pub yesterday and I’m – and I don’t feel any worse. And then I did start feeling rotten. But I think the whole consequences of it all were dawning on me. And you know, ‘heart attack’, my dad had had a heart attack but he was seventy odd. But it just didn’t – I just didn’t think it could’ve happened.

HA11, male, MI in 1999 aged 42 years

I felt like the world was coming to an end. You feel absolutely shattered, you know really tired and quite depressed really. [. . .] You know, I was only 47 years old. ‘I’ve got a life.’ You know, I have ambitions to reach 97. And you think ‘Well all this is coming to an end; I’m on my way out. This is what my parents should be doing you know, it’s not where I should be. This is for older people, much older people’.

HA18, MI in 1995 aged 47 years

However, health professionals need to consider patients’ individual life circumstances rather than make assumptions based on age alone. The disruption of MI to daily life may be just as severe for older patients as for younger ones, but their horizons of expectation for recovery and their resources for coping and adjustment may be very different.

Those who considered themselves to have led healthy and physically active lifestyles before their MI may particularly struggle to come to terms with the diagnosis. One man, who found it difficult to accept that someone like him could have had a heart attack in his early fifties, explained that it made him feel better when an even younger patient came onto the ward.

I must admit, I felt depressed when I found out I’d had a heart attack. ‘Why me?’ All my life I’d been working on my feet and I thought I was fit. I thought, ‘Why me? There’s other people who sit down at desks, you know bigger than me, so ‘Why me?’ and I was angry as well, it’s hard to explain. You don’t think you’ve survived and thank god you have, but it was a couple of days later when somebody else came in to the hospital who was younger than me, because everyone else in this ward was older and I was the youngest, and when this person came in who was younger than me, I felt a lot better. It’s a terrible thing to say now, but I did.

HA29, male, MI in 1993 aged 54 years

More detailed explanations about the multiple risk factors for MI might help to dispel risk stereotypes as well as provide explanations which can be repeated to family and friends who are curious about why the MI happened.

Conversely, patients with sedentary lifestyles, unhealthy diets and habits may be sensitive to either spoken or unspoken suggestions that they are to blame for their MI and feel very defeatist about diagnosis. These patients may benefit from empathic education that provides encouragement. Previous qualitative research has illustrated how patients’ early sense-making about the possible causes of their heart attack may impact on their motivation for behaviour change and engagement in secondary prevention over time.

Having to tell partners and family members about the diagnosis, and explain why it happened, can be an additional burden for patients. Many patients in this study described having to tell their family as a very difficult and emotional event. While patients themselves feel vulnerable and struggle to make sense of their diagnosis, having to worry about the reactions of their loved ones causes extra stress. Some patients whose parents were still alive decided not to tell them to protect them from worry.

And the worst part was, was telling people. I had to tell my sister. And obviously she was very upset. I was [. . .] Right so and I, then I phoned husband at work and he came home and I phoned, well it was actually my daughter-in-law I spoke to I, I couldn’t get hold of my son – I’ve three boys and – the youngest. Anyway the daughter-in-law came [um] along with my sister and we sat and we talked about it. I was very, very upset. Couldn’t believe, I couldn’t believe it because I felt so well. And I’d had no, no warning, no sign, no anything.

HA01, female, MI in 2003 aged 63 years

HA02 explained that he was particularly worried about his young daughter’s reaction to learning the diagnosis; he and his wife decided to delay telling her until his condition had improved. A couple of patients said they had found it helpful when hospital staff offered to talk to their children.

I suppose the thing that I’m most worried about actually was the impact upon my nine year old daughter [. . .] Over the last 2 or 3 years the only people that she would have been aware of that had had heart attacks; one was her headmistress’s husband that we knew very well, and he just dropped down dead in the street at about my age. And then last summer her best friend’s father, who was a very fit, 64-year-old professor at the university. He just dropped down dead while in Italy, while on holiday in Italy. Therefore, our concerns were that for [my daughter], heart attacks would be seen as being something that killed you. So initially that evening, my wife, didn’t say to, didn’t say to [my daughter] that I’d had a heart attack. She said ‘you know that daddy had a bad pain this morning, well he had to go to hospital but he’s fine now’. So it was about a day later before [my daughter] was aware that I’d had a heart attack.

HA02, male, MI in 2003 aged 54 years

Especially in situations where diagnosis was not straightforward and patients and their families received mixed or changing messages, this could cause strong feelings of anger and guilt among the family.

My husband, because she’d told me there nothing wrong with me and I was fine, I says to my husband, ‘well you might as well go to work’. So he went to work, well he went home, he fetched my daughter and they come back. He didn’t go to work, he come back. Well, he was bitter because he’d left me and I was having a heart attack. So he felt he’d let me down and I felt he’d let me down because he’d gone, he should have stopped, even though I told him to go. And there was all this, but it really upset him to come and see me all wired up and they’d told him there was nothing wrong with me. So you know, they was crying, my daughter and my husband, and I was crying. It’s very emotional.

HA03, female, MI in 1998 aged 53 years

Patients may also feel ill prepared to answer questions from partners and family members, and value the support of staff to explain things accurately and at the appropriate level. Health professionals should check if patients would like support to inform family and friends and answer their initial questions. Recommendations for websites and other resources are also appreciated by patients and families.

Patients’ emotional responses to diagnosis develop over time; those who seem to be coping well initially may nevertheless require psychological support at a later stage. Some patients said that it had taken several weeks or even months for them to emotionally respond to the diagnosis.

I think I was just stunned [um] to the point where I didn’t, I didn’t fully take it in and I’ve spoken to my doctor since and he said, ‘When, when you came to see me,’ he said, ‘you were so calm and you’d had a heart attack, and you were saying, “oh I think it might be a bit of indigestion”, you were very calm,’ he said, ‘and I think it suddenly hit you after a few weeks and that’s why the anxiety came’. It did suddenly hit me that you know I could have died. But it didn’t affect me at the time, I just got on with it.

HA32, female, MI in 2003 aged 53 years

Well with hindsight, you pick up the terminology and I realise now that you just go in to a state of denial, you just don’t accept it. You just refuse to believe that this is happening to me. I enjoyed super health all my life and I worked until I was sixty-five and this happened within three months of me retiring. It just seems so wrong and you refuse to accept it.

HA28, white male, married, MI aged 65 years

Patients with a very stoic and calm response at the time of diagnosis might also be the ones who put up a front towards friends and family and who avoid seeking out peer support. However, maintaining an image of strength and invincibility over a long time is likely to be emotionally exhausting. Previous qualitative research in this area suggests that patients’ ways of coping continue to be influenced by gender stereotypes. 105 Hegemonic ideals of masculinity mean that men may find it especially difficult to come to terms with the feeling of physical vulnerability that the experience of MI brings (see also Part 6: emotional impact of MI for patients and their families and Part 7: regaining body confidence: patients’ experiences of physical rehabilitation).

Key questions

Who and what will keep me safe?

What happens to other MI patients and what does this mean for me?

How long will I need to stay here?

What can I hope for?

Key emotions

Anxiety, worry, lack of familiarity, trust, gratitude, social comparison.

Patients may experience the hospital environment, and especially the technical equipment of the cardiac unit, as reassuring or threatening, depending on their perspective. Health professionals can help put patients at ease in this unfamiliar environment with a reassuring and flexible attitude. Small things can make a big difference, such as access to a telephone.

[In the cardiac ward] I went into a section which is equipped with full monitoring equipment and I was on various drips and goodness knows what else. It’s an intimidating place to find yourself in because all this monitoring equipment is all, emitting all strange sorts of bleeps and noises and it’s very difficult to relax.

HA10, male, MI in 2003 aged 63 years

I was allowed to sit up and have something to eat, make a few phone calls, which was good because it felt a bit like, more like normality. [. . .] I was able to make phone calls to people, although I think people were quite surprised to hear from me, but it was quite therapeutic, hearing somebody else’s voice.

HA11, male, MI in 1999 aged 42 years

Another patient felt grateful that he was given a private room so that his young family could come and visit him without disturbing other patients.

The first night I was taken off the monitors, I was actually in little separate room which was fortunate because I’ve a big family and, [um] they thought it’d be, because they’d a room would be easier if I was in that rather than in a general ward, which was lovely of them because it meant that people could come and go. Because as I say there’s my wife and my young son, well my young daughter as well, my daughter’s only a year older than me son.

HA05, male, MI in 2003 aged 37 years

Several patients in the study said that the first few hours and the first night after their heart attack had been the most difficult and a time when they had felt very worried that they might die alone without anyone noticing. A few said that they had felt so anxious that they had found it difficult to get any sleep. These patients were extremely grateful for friendly gestures from health professionals such as a cup of tea in the middle of the night, someone holding their hand, a chat or words of encouragement, and said these things had made a huge difference to them.

The first night I was taken off the monitors, I was getting panic attacks [pause], because prior, at least if they’re on, I mean in, in reality if you suddenly go crash, the chance of them actually being there watching probably aren’t that strong really [laugh] anyway. The times they do go bing-bing-bing, and nobody comes [laugh], they’d probably look at you and go ‘Oh, forget that, there’s nothing, nothing really wrong because you usually you’ve just pulled it off or something’, 99 times out of 100 it’s just a technical glitch of course. [um] But the first night I didn’t have them I was really quite worried and I called them a couple of times and they were very understanding and very helpful and they actually give me a, a little bit of a sedative to ultimately to sleep, because I just couldn’t sleep, because you’re just so aware of your heartbeat.

HA05, male, MI in 2001 aged 37 years

I found the staff excellent. I found the staff excellent, you know they said to me ‘you’ll be up and running in a few days you know’. One nurse, an Irish girl if I may say, was on night duty. They used to come down and see me every night about, I used to be awake half the night, and make me a cup of coffee about 3 o’clock in the morning, and we’d have a chat and things like that. They did make life good for me.

HA06, male, MI in 2003 aged 70 years

Patients were aware that hospital staff were very busy and often pressurised for time, so they valued it all the more when doctors or nurses provided emotional support by being available to listen or answer questions.

It was the very attitude of them [that made me feel secure], you know. They were very, they were very caring and they sort of seemed as if they really understood how you were feeling. And I was grateful for that because it wasn’t all this starchy business you know, it was nice. And my family were able to come in and they were around me but I was all wired up to everything you know and that is a bit frightening.

HA35, female, MI in 2001 aged 77 years

Many patients spoke very highly of the coronary care specialist staff. By and large, patients felt a great deal of gratitude and trust in the competence of the health professionals who looked after them. Often this was ascribed to personal characteristics and the manner in which they talked to patients, rather than age, seniority or appearance. One man described how the consultant filled him with trust and made him relax despite the fact that the consultant was covered in blood when they first met.

And within about half an hour of arriving, the consultant came in, introduced himself. He’d just, he must’ve come almost straight from surgery because he had – he looked like a butcher. He had a gown on that was covered [laughs] well it had blood all over it. He said, ‘Oh don’t worry, don’t worry, it’s highly unlikely we’ll have to open you up’. But he had this air about him that I was, you know it was just his actions, his voice. I mean he wasn’t very old, he probably wasn’t much older than me, if at all and he was just, I mean it just made me feel relaxed and felt like I was in good hands and that, all the time that meant so much to me that you know, my trust was in these people and as long as I felt that they knew what they were doing, I was going to be all right and that things weren’t going to get any worse.

HA11, male, MI in 1999 aged 42 years

However, some patients thought that the level of information provision during their hospital stay could have been improved. While those who asked a lot of questions usually got answers, others assumed that they would be told what they needed to know without asking. This did not always happen, for example when staff changed. This man was too preoccupied to think of the questions he might need to ask about his stress test.

Another thing that upset me at the time; you’re allocated a nurse when you first get in to the unit. Now then, that nurse after two or three days, her father was taken seriously ill, so she was stood down. Allocated another nurse. So one nurse didn’t know what the other one had told me and now I know I should have asked questions but you’re not, you withdraw in to yourself. You’re angry at being there. ‘Why me at my age?’ I was only 54, coming up for 55 and when I was discharged and went back several weeks’ time for a stress test, I didn’t know what that was. I didn’t know it was a walking machine or a running machine. I didn’t know because I hadn’t been told and I didn’t know to ask.

HA29, male, MI in 1993 aged 54 years

Those who stayed in hospital for longer periods sometimes found that information provision became more patchy as time went on. Patients appreciate health professionals who take the time to explain diagnostic procedures and interventions, even if they are unable to truly share in the decisions. One man observed that the consultants seemed to vary the amount of information they provided to patients. He addressed doctors by their first names to create an equal atmosphere for communication. He appreciated it when a consultant did a drawing of the heart for him to clarify his explanations.

The thing that struck me because you know, hospitals are not private places so although you have screens round, it’s impossible not to hear other conversations going on. And it struck me that there were different levels of information given by doctors. Some of it maybe on the estimation of what the patient will receive and I think some of it is just to do with the assertiveness of the patient. [. . .] I was always fairly questioning and wanted to find out what was going on. I found that actually a very good technique given that the doctors all call you by your Christian name, was I just called them by their Christian name, you know and it’s sort of a – just as a way of getting equality.

HA02, male, MI in 2003 aged 54 years

The asymmetrical power relationship between patients and senior medical staff can be detrimental to the quality of communication. Health professionals can help to redress this power imbalance by making eye contact, talking to patients at the same level (e.g. sitting down by the bedside rather than standing up) and adjusting their manner of speaking in line with patients’ level of understanding.

Change-over of care between different members of staff could mean that changes in drugs were not adequately communicated. HA05 felt it was advisable to double-check with staff that they were getting the correct medication.

Subsequently and while you’re in, when they’re doing the rounds, etc., I don’t think you get an awful lot of information there. I think they just tend to gloss over things and you, you have to ask, you have to check things, because I’ve had one or two instances of problems with wrong dosages of drugs and things being stopped and yet you ask and, ‘Oh no, we shouldn’t be doing that’, Well, you just have’ and you know . . . Not everybody’s necessarily so aware or, or you know, would ask the right questions.

HA05, male, MI in 2003 aged 37 years

Explaining treatment decisions and drug regimens to patients in more detail may thus provide an additional safeguard against mix-ups due to miscommunication and human error.

During their stay on a cardiac ward, patients invariably come into close contact with other coronary care patients. Meeting other patients and witnessing their treatment involved both positive and negative experiences. Several patients said they had found it helpful to talk to others ‘in the same boat’. This man said that even though he would have preferred a room by himself, he experienced the company of other patients on the ward as supportive.

It was quite good being in the ward together [. . .] They were all angina sufferers so it wasn’t quite the same. I sort of leapfrogged them in the scales of who had what wrong, but they understood the pain and the fear of it and it was like suddenly being in a little club. So it was actually quite helpful. I didn’t really like it from the moment I walked in because I’d rather be on my own. But I think it was actually a very good thing because you could actually talk to people you’d never met before in your life about really personal things because they were all in the same boat. So it was actually very good.

HA11, male, MI in 1999 aged 42 years

Another man, who had to return to hospital for a bypass operation, described how the company and atmosphere on the ward helped to improve his experience of the surgery.

They transferred me into a side ward with three young lads in because they thought I would cheer them up. I think the reverse happened, but it was great. There was a 14-year-old with a lung problem who eventually had to get it cut out. There was another young lad with a concave chest, which they were going to take his ribs out and reverse them; a procedure they had never done at the hospital before and there was another chap who was quite an early age to be having bypasses. So we were mixed bag, we settled each other down and the nurses helped. The nurses were quite young, a lot of training nurses, which was surprising. But we were a good mix and we helped each other out and we helped each other to get over their fears, (a) before the surgery and (b) after.

HA12, male, MI in 2003 aged 65 years

Some patients said that comparing their own fate with that of others had helped them to put things in perspective. Seeing other patients make a good recovery gave them hope, but it could also be distressing to realise that fellow patients had died despite being cared for in hospital. Those who were in hospital for several days became aware of the staff behaviour that indicated that someone ‘hadn’t made it’.

But the one thing we, looking round the ward, all had, seemed to have in common is everybody looked most unlike heart problem people in that they all looked fit but to be there they had to be suffering from a heart problem. And I suppose the one very distressing thing was that you soon became aware that, not frequently but on a number of occasions during the time that I was there, people were being admitted and they didn’t make it and we had the all too familiar thing happen where all the curtains were drawn and you knew that somebody else hadn’t made it and they were on their way.

HA10, male, MI in 2003 aged 63 years

Those who are initially in intensive or high-dependency care may find that it is a difficult transition to the ward. The following quote illustrates the difference that a sympathetic nurse made to a patient who was finding it hard to deal with the noise on the ward.

Other people in intensive care had been so quiet and peaceful. Back into a ward, there’s people shouting and there’s a television on, and I, I was frightened, it was horrendous. I can’t explain it. I wasn’t frightened of having another heart attack. It, it was just this tremendous noise; people just shouting across to each other from one bed to another. Turning the television up, any noise at all, was, was horrific. It was, I guess I was seeking peace, peace and quiet. So any noise at all was, was magnified. It was, it wasn’t somebody talking, people to me seemed to be shouting and screaming and I didn’t need that. It was the last thing I wanted; I just purely sought peace and I wasn’t getting it. [. . .] And there was a very sympathetic sister on the ward who realised I was badly affected by the noise, and she moved me into a side ward for a couple of days and then from there into a much quieter ward than the original one.

HA30, male, MI in 1994 aged 53 years

Key questions

What are you going to do to me?

What are the possible outcomes? What are the alternatives?

What is my role in this?

Do I have a say? Can I do anything to help?

Key emotions

Uncertainty, worry, anxiety, trust and confidence in health professionals’ competence.

The data analysed in this report were collected in 2002–3. Since then, treatment options for MI have significantly developed, and nowadays many patients will experience minimally invasive procedures and very brief hospital stays. How patients experience these newer forms of treatment could not be explored on the basis of this set of interviews. However, other qualitative research in this area has suggested that while the ‘ “high-tech” procedure of primary angioplasty and fast recovery contributes to high levels of patient satisfaction’, ‘the feeling of being fixed and lack of belief at having had a heart attack may have implications for uptake of rehabilitation and lifestyle changes following hospital discharge’ (p. 85). 106 Patients may tend to see their condition as ‘acute’ rather than ‘chronic’ and their treatment as curative. 107

Involving patients in medical decision-making is now widely regarded as both ethical and beneficial. However, previous qualitative research suggests that health professionals and patients view patient involvement in treatment decisions in coronary care mostly in terms of information provision. 108,109

Many patients will experience feelings of anxiety before having surgical treatment. Health professionals can alleviate fear and uncertainty by keeping patients informed about what will be happening to them and the possible outcomes.

The unknown, the thought of having your chest sliced open, your ribs cut open and your ribs expanded, your heart being handled, being on a life support machine and there’s always a chance even with the best surgeons in the world that you may not come out of it. That really frightened me.

HA17, male, MI in 1980 and 1998 aged 49 years and 67 years, bypass surgery in 1988

When I went in [for the bypass operation] I was very, very apprehensive, I knew he had a 98% success rate and I kept saying to myself I’ve got to be one of the 98 not the 2. I’m a quite positive person really and you know I felt I’m going to be a 98 not a 2, but I was very apprehensive.

HA12, male, MI in 2003 aged 65 years

Health professionals should also consider the possible effects that a patient undergoing surgery may have on partners and other family members.

When I had the bypass, because I was down the theatre 10 ½ hours and [my husband] was expecting me to be back up in 3, he went through hell. He didn’t think I was going to come out of that theatre. And apparently, you know some of the patients’ relatives were saying to me, ‘I’ve never seen a man crying so much’. And every time they went out and said, ‘she’s still in there?’ he’d start crying. He said ‘there’s something wrong, there’s something wrong’. Because the surgeon had told him I’d be out in about 3 hours and when it was 10 ½ hours he . . . and I didn’t know nothing, obviously, I’m asleep. But he went through that. He’s gone through a lot.

HA03, female, MI in 1998 aged 53 years

Previous qualitative research has identified the main existential concerns in surgeon–patient interactions as surviving uncertainty, negotiating responsibility and trusting the doctor’s proficiency. It has also been suggested that when handling uncertainty, doctors are focused on imparting complex information about risk, while for patients, the manner of information provision may serve to establish doctors’ trustworthiness. 110

Positive encounters with staff included those who had made an effort to answer questions fully and provide explanations at an appropriate level. Nurses were usually thought to have more time to talk to patients, and to be better communicators, than surgeons or cardiac consultants.

Rushed as they were, they [cardiac ward nurses] always had time to talk to you about what was going on. They would explain procedures to you. I think you have to ask in some cases, but once you have asked, or once I had asked, they were quite willing to go through and tell you. I think they want to be fairly convinced that you aren’t going to panic or misconstrue what they’re saying, so maybe they’ll be a little bit guarded at first. But generally I think that they’re there to help you get better and if they perceive that what you’re asking is because you want to know and it’s going to help you get better, they’ll give you the right answers.

HA23, male, MIs in 1991 and 1998 aged 49 years and 56 years

There are other barriers to the flow of information between patients and staff, as this woman suggests:

If you ask questions they answer you. If you don’t ask the question, obviously they’re not going to tell you because they don’t know that you want to know. I think probably they could say, ‘Is there anything that you want to know’. I mean they did, they did say that to me sometimes but I know some people are a bit befuddled or a bit in awe of doctors and frightened to ask or they don’t understand the technical terms or what have you.

HA32, female, MI in 2003 aged 53 years

A man voiced his dissatisfaction with the, in his view, disengaged and clipped exchanges he had had with senior clinicians.

What I find so unhelpful is the standard mode of communication with patients that now seems to be adopted by senior clinicians. This is characterised by an absolutely minimalist attitude to factual or explanatory statements that results in a delivery so uninformative and terse that it inhibits any possibility of dialogue. The contrast between consultant--speak and the frank and easy communications that you just take for granted with your GP is stark. [. . .] It’s always possible to find excuses: there’s always the pressure to meet number targets and the chronic shortage of time. It may even be that the high academic intellectual demands of modern hi-tech hardware oriented medicine militates against the selection of good communicators. I recall an elderly lady on the next treadmill to me at a gym session bending my ear unmercifully about some consultant she had taken against in a big way. I hadn’t a clue whom she was talking about until she said, ‘I wouldn’t mind so much if only he would occasionally look me in the eye when he is talking to me’.

HA04, male, MI in 2002 aged 62 years

Patients differed in their information preferences. A number were keen to know as much detail as possible and said that they had been assertive enough to ask the questions. Others were satisfied to have a rough idea of what would happen to them and felt happy to leave the details to medical staff. As the following man observed, providing information at the appropriate level of detail for an individual patient can be challenging for clinicians.

I then enquired as to how [the defibrillator] was fitted. The surgeon actually expressed some surprise that I was interested in the technicalities and he said, and I quite understand and believe what he said, because I’ve found out since a lot patients shut their minds to ‘how’ and ‘why’. It must be a very difficult job for either surgeon or nursing staff to find the right level to pitch the information at, because everybody’s different. In the cath labs where they actually do all these insertions, do all the fancy work with the electrician [laughs], it, I was fascinated to watch it all on the screen and yet there were people who were in the same ward as I was, it was a little four-bedded ward, who asked for their eyes covering because they didn’t want to know.

HA08, male, MI in 1989 aged 40 years

Another man emphasised the difference between the importance of being fully informed about the planned procedure and its attached risks and benefits, and not wanting to be bothered with the full technical details of the operation.

Well, in truth there wasn’t much of a decision to be made [about having the angioplasty]. I had complete confidence in the medical team and they had a clear course of action in mind. There weren’t any options on offer to agonise about. In those circumstances you’d be foolish to do other than go with the flow. Always provided you had fully understood what you had let yourself in for, and subject to the condition, in my fastidious, or just plain nervous case that I wished to be wholly unaware of work in progress. I have never understood this morbid obsession with watching on a display monitor while people poke around your insides. When I next came to I had been fitted with a stent in my left anterior descending artery and diagonal branch. I gather this was thought to be a pretty successful conclusion.

HA04, male, MI in 2002 aged 62 years

One woman acknowledged that it may be difficult to take in all relevant information about the treatments received at the time.

I think sometimes we don’t take things in. It would be useful to be given a sheet, I would like a sheet saying what has actually happened to me. I don’t know what bit of my heart is affected, other than they’ve said it’s the back bit. That’s all, that’s all I heard. They obviously said where in proper technical terms but I didn’t take that in and I would like to know so I think that would be useful for people who want to know.

HA32, female, MI in 2003 aged 53 years

Regardless of their personal information preferences, most patients emphasised that their main concern was the feeling that they could trust the medical staff looking after them and had confidence in their professional expertise and competence. Some patients enquired about the surgeon’s success rates or years of practice in performing a particular procedure. Interpersonal skills were also important in promoting a feeling of trust (see also Part 3: experience of the hospital environment).

One of the things that I wanted to know from the surgeon was how many of these things had he done. Was he, sort of, did he know what he was doing and he told me, this was September, he told me by that time he had done about 140 bypass operations that year. So that was you know, quite reassuring. And I also asked him what the prognosis was and he told me that 95% of all cases of, who have bypass surgery are successful, and 5% are not. So you’ve got a 1 in 20, is it? yes 1 in 20 chance that something might go wrong. And I said ‘what can go wrong?’. He said ‘mostly what can go wrong is that you get some kind of sepsis and we can fix that’. So I thought the odds were pretty good, bearing in mind that my cardiologist said I’ve got to have this done, not much choice.

HA09, male, MI in 1995 aged 69 years

While very few patients described instances of shared decision-making, the case of one elderly patient illustrates how upsetting it can be when patients’ own values and priorities are ignored in the course of deciding treatment options. This woman in her early eighties said that she had been judged to be too old to be operated on. She felt that the medical agenda of minimising risk conflicted with her best interests as a patient.

[I felt] devastated, devastated because they said, ‘oh yes, next week we will be taking you down to the theatre next week’ and when next week came they changed their minds because they brought another somebody else in who said, ‘Oh no, no, she’s too old’. And they said it in front of me, I’m too old and I felt so old, I felt ancient. Really, really I felt about 900 years old and I said, ‘well I don’t mind dying on the table, I won’t know anything about it’. But they said, ‘but we will and we don’t like to lose a patient’. But then I said, ‘you have a chance of saving one, too, haven’t you’. [. . .] I could quite understand they don’t want to lose a patient, it’s not good for them to lose a patient and if the chances are 50/50, I think they’d rather take their 50 on their side and have you die at home than on their table. That is fair enough, but then from the patient’s point of view, who hasn’t got much chance anyway, she would rather take the chance on the other side of the 50 and go ahead. Wouldn’t you?

HA15, female, MI in 2000 aged 81 years

This patient eventually found a consultant who was willing to perform the operation and made a good recovery.

Key questions

Why did I have a heart attack?

Will it happen again?

Can I still be the person I used to be?

Who or what will help me cope with what I feel?

Key emotions

Frustration, grief, loss of confidence, stigma and isolation.

In the days, weeks and months following a heart attack, patients and their families need to adjust to life with a chronic health condition. Besides lifestyle modifications and adoption of new routines such as taking regular medications, patients need to come to terms with the disruption the MI has caused to their sense of identity.

‘Loss of confidence’ was a phrase that was used by almost all patients in the sample when they were asked how the experience of MI had affected them emotionally. ‘Reassurance’ was what they said they most needed from health professionals. For some, the sense of vulnerability and threat was so severe that it led them to abandon activities they had previously enjoyed, leading into a negative spiral of avoidance and depression.

At the moment I don’t feel I ever will be confident enough again. And I, we were going to go on holiday with my sister to Portugal, because last year we went and we had a lovely time and we said we’d go again this year. I won’t fly. I don’t want to go which was a little bit upsetting for my sister. We had a few words because she didn’t understand how I felt. I don’t suppose she ever will understand how I felt, but there is no way I am leaving the country. And there’s no way I’m leaving Wales. It takes me all my time to go to [the local town] because if anything happens to me, I want to go to the hospital, the [local hospital] in [a nearby town].

HA01, female, MI 2003 aged 63 years

Patients who considered themselves in good health and had led an active lifestyle before their MI may feel that they have not only experienced a life-threatening event but have also lost an important part of their previous identity. A loss of confidence in the body can make people afraid to do any kind of exercise – even though most of them were well aware about the importance of physical activity for secondary prevention (see also Part 7: regaining body confidence: patients’ experiences of physical rehabilitation).

A heart attack hits you emotionally as well, that’s what I found. I couldn’t believe it that you know that I’d done all that I could do to be fit, have the right diet, I don’t smoke, I’m not overweight. I just, you know, I just couldn’t believe and if I could have a heart attack, well lots of people said that to me, if you can have a heart attack anybody can. So that made me feel very humble.

HA14, male, MI in 2003 aged 51 years

Patients spoke of a continued sense of stigma surrounding MI and several patients said that they had been selective about who they had told. Those who had made use of peer support and community-based rehabilitation groups spoke very positively about the value of talking to others with similar experiences. However, some patients do not have easy access to this form of support. While some people may benefit from encouragement to use such resources, it is important to recognise that others do not want to meet other people who have had a MI; they may prefer the relative anonymity of websites or telephone helplines. Health professionals should, therefore, give patients addresses for online support groups as well as any locally available resources (see also Part 9: building a supportive environment: myocardial infarction patients’ ongoing support needs).

People in the interviews often said that their partner had been a vital source of emotional support for them in the weeks and months following their heart attack. However, the experience of MI could affect the relationship and bring about a renegotiation of roles within the marriage. This could sometimes be a difficult process.

I suppose having been the breadwinner. I’m from a generation that I never wanted my wife to go out to work. Maybe we were fortunate that we were in such a position that she didn’t have to. And following my initial heart attack, and certainly following my enforced medical retirement some thirteen years ago, I found it difficult, very difficult to come to terms with that and were my wife present, she would tell you that I made life quite difficult for her at that period. Partly related to the job that I had, I was used to being in a position of authority and I found it quite difficult to find a reason for being.

HA08, MI in 1989 aged 40 years

Male patients, in particular, said that they had found it difficult to pass on some of their previous responsibilities, such as driving, to their spouse. A few men who had to take early retirement on medical grounds said that they felt useless and emasculated following their MI. Findings from previous qualitative research confirm that men are at risk of experiencing a crisis of masculinity after MI. 111 For women, on the other hand, it might be difficult to step back from previous domestic tasks and demand additional support from family members.

Some patients also acknowledged that they themselves had become more difficult to be with and a few said that they had become much more short-tempered, possibly as a result of medication side effects.

Well, you know you see the bad side of the thing, you’ve had a heart attack, how bad has it been, what’s the damage, are you going to have another one. If I do this I may have one. I mustn’t do this, I mustn’t do that. In a way it made life a bit hard for my wife. I realised that fully and the treatment I’m on, these various tablets, they do make you a little bit short tempered, I’m understand. And I snap at her sometimes when I shouldn’t. But that may be one of the side effects of it.

HA06, male MI in 1996 aged 70 years

My wife got the, the brunt of my sort of emotional state and it’s something that the consultant had said that you know, I’d have ups and downs and that I might get tearful and if you think you want a good cry to, you know, just let it happen but it will pass. But everybody else was saying how marvellous I was doing and patting me on the back for handling this terrible thing so well. And I mean my wife was getting recognition for the support she’d given me as well but it was, I think it wasn’t fair that everybody was saying how fantastic I was handling it when my wife was getting the dark side.

HA09, male, MI in 1995 aged 69 years

I’m very, very glad that we had such, and still have such a strong marriage [um] because the black moods, the despair and very much out of character after the triple bypass initially had me breaking down and crying for no apparent reason. I could have been talking much as I am now, to either my wife or a friend or a colleague, and I would start to cry and to this day I couldn’t tell anybody why. I then got quite black moods, a case of ‘Why me?’, ‘Why is it happening to me?’ ‘What have I done, what have I done to deserve it?’ All the usual sayings and I think because it’s the nearest and dearest, the only person that’s with you at that time, you take out of them some of your own anguish, some of your own anger.

HA08, MI in 1989 aged 40 years

Health professionals can play a positive role in mitigating the impact of MI on couples’ relationships by helping to prepare patients and their partners for the strains that might occur. Hearing accounts from other patients and partners may also help to understand points of conflict and develop strategies for dealing with marital tensions.

Some patients in the study did not feel able to openly talk about their concerns with their partner because they did not want to worry them.

I don’t think I can fully talk to my wife sometimes about my concerns because [sigh] I think she overly worries about it. On some things she, she gets then frightened and worried about it, and then I only then get upset for her, which doesn’t help me. So the point of trying to share it with somebody helping me, it just defeats, all I’m doing is telling her something that upsets her and I’m thinking where was the benefit in that, that, that’s not to say if there’s something we need to worry about and do something about, that I certainly shouldn’t be hiding something like that from her. But some of the concerns that you might just want to chat to somebody or you know, get off your chest, I wouldn’t do it with my wife now because of having seeing her react.

HA05, male, MI in 2003 aged 37 years

Having a named health professional who is easily accessible (perhaps via e-mail or a telephone messaging service) to provide reassurance on non-urgent concerns was greatly appreciated by patients. Several said that they had benefited from a trusting and supportive relationship with their cardiac nurse.

Partners are likely to worry about the occurrence of a repeat attack, sometimes more than patients themselves, and they might also experience feelings of powerlessness and frustration. Initially after returning home, some patients said that they had felt ‘mollycoddled’ by an overprotective spouse.

She wouldn’t let me out of her sight, that was the main thing. She would have followed me to the toilet if she could. She wouldn’t let me go – there’s a shop 300 yards away from here where I go and buy a paper. Wouldn’t let me go and do that. She was very protective, it worried her a lot, more than I think it did me and I think that is the impact on people.

HA12, male, MI in 2003 aged 65 years

Many patients said they had found it very helpful when a consultant or nurse had talked to their partner to reassure them on the kinds of activities that were safe for patients to engage in during the period of recovery. Involving spouses in rehabilitation could also provide much-needed reassurance.

We found that a lot of the stress after the operation derived from the fact that she was more, more worried about, about what I could do than I was. And she was trying to hold me back all the time whereas I was always trying to go. And one of the benefits of joining the support group is precisely this, that the spouse has a chance to speak to other spouses and see you know, what you can do and what you can’t do and that takes away a lot of the stress of rehabilitation. [. . .] [Also] Dr X was very instrumental in helping me there. He said to my wife, ‘Look he’s got a body and his body’s going to tell him what he can do and what he can’t do’. And my wife took that on board and it was far easier and then from then on we made jokes about it.

HA09, male MI in 1995 aged 69 years

Previous qualitative research has particularly highlighted a need for guidance for both partners on sexual activity. 112–116 One man said that his wife had been more concerned than he was about restarting sexual relations after his heart attack, but openly talking about her worries had helped them to get past it.

Resuming your sex life after a heart attack, it’s quite difficult. It wasn’t so much difficult for me as for my wife actually. She was very concerned that I was going to throw another wobbler when . . . [. . .] What helped was talking. You have to, you have to always, you can tell when things are not quite right, ‘So what is the problem?’ ‘Oh I’m a bit concerned, I don’t want you to hurt yourself, I don’t want you to.’ ‘Okay I’m not going to hurt myself, I’m aware of what I’m doing. If I hurt, you’ll know.’

HA18, male, MI in 1995 aged 47 years

Alongside information about the safety of sexual intercourse, patients may also require emotional support if their body image and sexual confidence have been negatively affected by surgical scars.

Because of the scar on, I didn’t want anybody to look at me, even my legs, you know with the scar all up my leg. I didn’t want anybody, I’d wear trousers all the while. And I didn’t want anybody to see the scar down my chest. It sort of, it’s you know, it was horrible, it was. And I didn’t feel, and I just didn’t feel sexual at all. I just didn’t want to know anything like that.

HA03, female, MI in 1998 aged 53 years.

People also sometimes find positive ways of coping with the emotional impact of MI; for several study participants, the experience of MI had sometimes been a turning point from which to reassess their priorities and make positive changes. Several had become actively engaged in cardiac rehabilitation or peer support groups or embarked on new projects that gave them hope and enjoyment (see also Part 6: building a supportive environment: myocardial infarction patients’ ongoing support needs).

However, some patients may need more intensive psychological support to help them come to terms with their heart attack and to find positive ways forward. The extended extracts below illustrate two cases of patients who experienced prolonged periods of severe depression after their MI before they found help.

Case study 1

One younger woman (HA33, MI in 2003 aged 36 years) developed panic attacks in the aftermath of her MI. After returning home from hospital, she at times felt too anxious to stay at home by herself. She was lucky to have a supportive family and was able to stay with her mother for stretches at a time.

Well I had visitors, everybody sort of kept an eye on me without trying to be too obvious. I did have bouts of anxiety and I would go and stay with my mum. My son would take me over there and I’d stay for a few days and then I’d come back when I felt better. And apparently, this happens quite a lot with people who are reasonably young having a heart attack, you get these anxiety attacks, which again is this wave of feeling which is similar to the heart attack but, but not quite the same. And I would get it for no apparent reason; it was obvious that my brain was doing something that I wasn’t really aware of. Then I would feel dreadful and I couldn’t, I didn’t want to be on my own, so my mum would look after me for a few days and that was nice.

Her depression continued for several months and led her to withdraw from people around her.

I was very, very low and I mean very, very low. Tearful, [um] depressed, depressed is the only word I can describe, really, really depressed. And [um] I didn’t want to go out the door. I didn’t want to go out the door, I didn’t want to do anything. Even after having that done, I still was so depressed and down and I didn’t want to do anything.

She described how she was eventually helped by the dedicated one-to-one support from a cardiac nurse, emphasising that this level of support would not have been possible in a group situation.

It was only [um] [the cardiac nurses] support that got me through it [. . .] Well, I think with [the cardiac nurse] it was her, it was the one-to-one basis, it’s not, it’s not being done in a class and then you can get to speak to somebody and she can, you know, find out more about you and find out why, you know, you’ve had a heart attack and why you’re still feeling down. And so she spent the time with me to get to know why I’d had my heart attack, why I felt so down, so she had something to work on then. And so she just helped me, you know, learn to relax because after you’ve had a heart attack the last thing you want to do is relax. You know, you’re scared to go to sleep in case you don’t wake up again so, you know, she just reassured, she gave me a lot of reassurance and a lot of help, a hell of a lot of help. [. . .] I’m a lot better now, obviously than what I was but I’m still getting there. I, I’ve still got to keep up the relaxation and stress management.

Case study 2

A man (HA30, MI in 1994 aged 53 years) who had previously enjoyed a very active lifestyle developed unstable angina after his heart attack and described how he became very depressed as a result of the constant feeling of physical vulnerability.

I eventually did come out of hospital after I was there for a fortnight. But when I got home, nothing was the same. I wasn’t the same. [Pause 4 seconds] There were days I would quite happily have died. I’d made up my mind, that if I had another heart attack, I wasn’t going to be the one to send for an ambulance because I did not like what was happening to me; it was just so horrific, so depressing, miserable, it was just no way to live. And this of course was only a month after I’d had the original heart attack.

He subsequently developed panic attacks and sank into a deep depression which affected his family life and left him feeling suicidal.

Angina started over the most silly thing. I could watch a programme on television, feel a bit sentimental about something in the programme and I’d get angina. I’d often have to walk out the room. That became [pause 3 seconds] the, the biggest thing in my life this depression, this fear, constant thoughts of suicide, that everything physical seemed to just, didn’t matter. It didn’t matter that I was out of breath when I got to the top of the stairs. Taking tablets, which I hate, to this day I hate, I went through this period where it didn’t matter. I’m supposed to take the tablets so I take the tablets. [. . .] Any confidence I’d had before just drained away. I, from that moment on, I became a failure. I did everybody down, I’d never be good enough to do anything worthwhile again. It was all psychological [um] but it was overwhelming, and from that day I have never been the same. It was quite, quite horrendous.

The turning point came when he asked his GP to sign him off work and he was referred for counselling.

So I ended, had to go to the doctors and say, ‘I’m just not coping’ and they signed me off again and fortunately sent me for counselling. That in itself was another blow to my confidence, the fact that I, of all people, would have to go through counselling. But there was an extremely patient lady, who I was seeing. She was concerned enough that she, she saw me every week, once a week. [. . .] So thrashed all this out and gradually having somebody to talk to in that way did help and I’d recommend to anybody, if they’re offered the chance of counselling, to go for it. Just get it, everything off your mind, get it off your chest as they say, [um] and it did help me.

After the counselling had come to an end, he asked to be referred back to rehabilitation classes. There he managed build a trusting relationship with one of the rehabilitation nurses who suggested that he try Reiki. He was very sceptical initially but now feels this has taught him the essential skill of relaxation and he manages much better than previously.

It was so absolutely wonderful, so refreshing, so relaxing that, yes, I can switch off. I can [pause 3 seconds] sit and watch television, and think of [the nurse], and I don’t go into a trance, but I – everything just washes away. Nothing bothers me, I’m completely at ease with myself. I’m still not the happiest person, I know I’ve got problems, but I can make them go purely because what I learnt during Reiki. And to be able to just switch off, I’m 63; I’ve never been able to do that in my life.

Further references for qualitative research on this topic

Texts on qualitative research are recommended. 117–119

Key emotions

Emasculation and vulnerability.

Worry and uncertainty.

Ambivalence towards exercise.

Empowerment and confidence.

Key questions

Will my body fail me again?

How much physical activity is safe for me to do?

How much exercise is beneficial?

How can I fit exercise into my life?

Insights from previous qualitative research

Previous research on cardiac patients’ engagement in rehabilitation schemes has reported great variation in the type of programmes offered to patients across different NHS localities as well as considerable variation in take-up rates. 120 It has also been suggested that existing schemes do not sufficiently address the needs of particular groups of MI patients who are known to be under-represented among the attendees of cardiac rehab programmes, such as women, people with ethnic minority backgrounds and older people. 121

Several qualitative studies have explored patients’ reasons for and against attending exercise classes and possible structural and personal barriers to accessing such programmes. 122–124 For example, O’Driscoll et al. 124 identified lack of professional training, role confusion among rehab staff and weak communication between secondary and primary care as service-related barriers to successful engagement. They found that staff struggled to prescribe accurate training intensities, had insufficient space/resources to invite partners along and did not transfer information from hospital stress tests, meaning that they were unable to tailor exercise to patients’ individual needs.

Cumulative insights from qualitative work on patients’ experiences of cardiac rehabilitation suggest that non-attendance and attrition from formal programmes are rarely rooted in patients’ lack of knowledge about the importance of exercise and adoption of a healthy lifestyle. Non-engagement should, therefore, not be dismissed as ‘non-compliance’, but is more fruitfully understood as well-reasoned decisions based on patients’ – not necessarily accurate – beliefs and perceptions which can be amenable to intervention122 or as the preliminary result of decisional ambivalence. 125 Instead, patients’ sense of self-efficacy, embarrassment about public exercise and perceptions about other attendees as well as the health professionals involved in delivery have been identified as some of the factors that influence patients’ decision-making about whether or not to attend cardiac rehabilitation schemes. 122,123 Qualitative studies have also shown that patients’ perceptions are subject to change over time123,126 and therefore greater flexibility in the ways rehab schemes are delivered may help to increase their reach. For example, Jackson et al. 123 argue that offering places on rehab schemes for a narrow time window only is likely to result in missed opportunities for those patients who initially may dismiss the need for this type of support but may change their minds when they find that their recovery does not progress as well as they had hoped.

Fears that physical activity will bring on repeat myocardial infarction

All participants in the study were conscious of the importance of regular exercise as a key aspect of secondary prevention. However, many of them said they felt unsure about how much physical activity was safe for them to engage in, and also, how intense and prolonged exercise would need to be to achieve a beneficial effect for their cardiovascular health.

People described their fear of having a repeat attack if they ‘overdid it’ when exercising. The experience of MI could fundamentally alter their relationship with their body: it was no longer trusted to function routinely, but was anxiously monitored for possible signs that another cardiac event was about to happen. This woman’s account illustrates the vicious cycle of fear of repeat attack, avoidance of rewarding physical activities and low mood.

I’m terrified [to go exercising by myself]. I wake up in the morning and I think right now today I will go for a swim. Right, I get my bathing costume, towel, bag, right who can I phone to come with me. So then I phone my sister’s husband, no he can’t come. Right, there’s nobody else I can phone, so I think ‘Well I won’t go, I’ll go tomorrow’. And then for the rest of the day I feel guilty because I haven’t been but I can’t go because I’m scared. What if anything happens to me in the baths. Who’s gonna be there. Whose gonna take me home. You know, if I’m going to die I want to die at home in my bed. I don’t want to go to a hospital and I don’t want to have an operation. So if I’m gonna have this heart attack I’m gonna die at home in my bed, so I’m not going out am I?

HA01, female, MI 2003 aged 63 years

Participants’ experience of formal rehabilitation programmes

The accounts of participants in this study describe a great deal of variation in terms of duration, organisation and content of the types of programmes they were offered. This is likely to reflect both the geographical and temporal range of their experiences (remote, rural, small town and urban settings, and 1989–2003, respectively). In reading the findings presented here, it should be borne in mind that participants were sampled at different stages of the rehabilitation process, allowing some of them to report on recent rehab experiences while others could offer more of a bird’s-eye view of how their experience of exercise classes had shaped their personal engagement in rehabilitation in the longer term.

Figure 13 provides an overview of the types of programmes participants in this study were offered and engaged in. Figure 14 adds information (where available) about whether or not participants continued to engage in regular exercise after completing the initial programme.

FIGURE 13.

Patients’ participation in cardiac rehabilitation programmes. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (square = diagnosed aged ≤ 40 years or younger; pentagon = diagnosed aged 41–50 years; hexagon = diagnosed aged 51–60 years; heptagon = diagnosed aged 61–70 years; octagon = diagnosed aged ≥ 71 years). Participant marital status: without shadow = single; with shadow = married or cohabiting. Participant ethnicity: white number = white British; black number = black and ethnic minority background.

Finding out about rehab schemes and waiting for a place

The majority of participants in this study were offered hospital-based rehabilitation classes in the form of twice- to thrice-weekly classes, running for 4–12 weeks, which combined supervised exercise with education and advice about healthy lifestyle. Most patients said they had been told about hospital-based rehab classes through their cardiac nurse, either just before or just after discharge from hospital. However, several participants said they had to wait for several weeks, and in some cases, months, before the start of the scheme. This could be a very anxious time for patients. This woman described her uncertainty and worry regarding the physical sensations she experienced.

I was frightened to come home. I didn’t want to stop in hospital but I didn’t want to come home. I thought, ‘well my husband’s got to go work, I’m going to be on my own’ and it’s really frightening, that time. From, I think it’s about 8 weeks, that 8 weeks from coming out of hospital to going to the rehabilitation, it’s really frightening because you’re sitting on your own and you have these twinges and you have pain in your chest, you know all these things are happening and I think all it is, is fear. When you’re frightened you tense up, and I think that’s what brings the pain on.

HA03, female, MI in 1998 aged 53 years

A couple of participants said that the offer of a hospital-based rehab place came so late that by then they had already recovered to an extent where they did not think they could gain any more from the programme. One younger man who, unlike many others in the study, felt confident about exercising, but who thought the rehab classes could have helped with his emotional adjustment, regretted that no class was available in the first few weeks after his discharge from hospital.

The fact was that the meetings were so infrequent that, you know, I’d almost fully recovered by then, by the time the aftercare started. But no, had it been in the first few weeks afterwards just possibly I may have got out of my system what caused me to be so horrible to [my wife], I don’t know but may be that would’ve helped.

HA11, male, MI in 1999 aged 42 years

Another man said it was helpful to have been given the Heart Manual with instructions about safe exercise and general lifestyle advice to bridge the time between discharge and the start of the formal programme. He used it like a diary to record his activities and monitor his progress. (HA16, male, MI in 1999 aged 49 years)

These accounts indicate the need to ensure that patients do not feel ‘left hanging’ in the period between discharge from hospital and the start of rehabilitation schemes and to provide them with points of contact and supporting information that can provide guidance on safe physical activities and reassurance in the early stages of recovery.

Patients’ reasons for non-attendance of group-based programmes

Enabling patients to make physical activity a routine part of life

The majority of participants in this study continued to engage in regular exercise months and even years after their MI and after their initial rehabilitation scheme had come to an end. Those who exercised regularly seemed to share a belief that they had an active role to play in preventing a repeat heart attack and described themselves as empowered by this belief. Many felt that joining a group of people ‘in the same boat’ had been helpful in maintaining the motivation to be regularly physically active, whether this was in the form of a community-based exercise group or as part of the activities organised by peer support groups such as dances or walks.

FIGURE 14.

Patients’ participation in hospital-based rehabilitation classes. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (square = diagnosed aged ≤ 40 years; pentagon = diagnosed aged 41–50 years; hexagon = diagnosed aged 51–60 years; heptagon = diagnosed aged 61–70 years; octagon = diagnosed aged ≥ 71 years). Participant marital status: without shadow = single; with shadow = married or cohabiting. Participant ethnicity: white number = white British; black number = black and ethnic minority background. Green circle indicates participant continued to engage in regular exercise after completing the initial programme, blue circle indicates that they did not.

For most of those who attended hospital-based exercise classes, they represented a crucial gateway to further information and support. Most of those who attended community-based exercise schemes after the end of phase 1 rehab had found out about their existence at the hospital-based classes. In a few cases, participants described how the hospital-based group had become a springboard for the setting up of ongoing community-based exercise classes, brought about by the joined initiative of group attendees and committed cardiac rehab staff.

I go to a group, which was set up from the hospital actually, a group of patients that did the exercises because the hospital runs an exercise class for heart patients and we’ve all attended this class and we all wanted to continue. So about five years ago, this group was set up and it’s exercises especially for pumping your heart. They’ve managed to get all sorts of equipment together. They’ve got a defibrillator, in case anybody has problems during the class, so you feel quite safe going to it, in the knowledge that somebody can revive you if something happens [laughs], but I don’t think anything ever has and we just have a good time. That’s, that’s twice a week. I can only go once a week but they do do the class twice a week and it’s good because everybody is glad to be alive and they’re all cheerful and making the most of it.

HA32, female, MI in 2003 aged 53 years

While a small qualitative study cannot establish whether or not those who attend rehab schemes are more likely to continue exercise in the longer term, the accounts of participants in this study highlight the important role that such schemes had played in helping them to make exercise part of their everyday life post MI. Many patients talked about how having a heart attack had caused them to reassess their priorities and make changes to their lifestyle, including new projects and new kinds of leisure activities. Making such far-reaching changes is likely to be easier for patients who have access to local facilities that they can afford and are no longer in full-time employment or with caring responsibilities.

The experiences recounted in this section also highlight some of the possible barriers to engagement in cardiac rehabilitation programmes and some of the challenges faced by those who continue in employment, who live in remote areas with poor public transport or who feel out of place in a group environment due to their age or gender, their approach to dealing with health issues or other personal qualities.

Finally, it should be noted that several participants in this study managed to set up good exercise routines on their own initiative, and all of those who were asked about the Heart Manual said that they had found it helpful, as either a substitute or a complement to group-based rehab.

Cardiac rehab was the best thing that could have happened. You do, you start off very gently, exercise, very gently, very easily and at the end of each session, someone will come and talk to you, the nurses will talk to you, absolutely brilliant. By the end of 6 weeks, I can do anything and it’s continued from there.

HA18, male, MI in 1995 aged 47 years

Key emotions

Helplessness/self-efficacy.

Trust and doubt.

Uncertainty about cause and effect.

Key questions

What can I do to help myself? And will it make a real difference?

What kind of life can I hope for after MI?

Who and what can help me in making changes?

Myocardial infarction as a juncture and turning point in patients’ lives

Patients who have experienced MI typically talk about it as a decisive juncture in their lives (see also Part 2: receiving the diagnosis and Part 6: the emotional impact of myocardial infarction for patients and their families). Many participants in this study used phrases such as ‘it was a wake-up call’ to describe how the realisation that they could have died during the attack had led them to reassess their priorities and make changes to their lifestyle.

A couple of recent studies have suggested that less invasive treatments, shorter hospital stays and quicker recovery rates may lead patients to perceive MI as an acute rather than a chronic health problem and consequently lessen the psychological impact of it as a life-changing experience. 106,107

Understanding the level of seriousness patients attribute to their MI and to what extent they perceive themselves as being able to make a difference to their future health are important preconditions for engaging patients in behaviour change for secondary prevention.

Numerous studies have demonstrated that education – informing patients about the importance of adopting particular health behaviours – is only one piece in the puzzle of affecting behaviour change. Qualitative research has illustrated the complex interactions between patients’ health beliefs, their motivation to change behaviour, their social context and level of support, and how all of these variables may change and develop over time. For example, Wiles127 found that patients’ beliefs about the extent to which they could make a difference to their personal risk were linked to their motivation to adopt health-promoting behaviours, but also that patients’ motivation tended to dwindle with the progress of time, especially if they felt that they were not reaping the benefits that health professionals had led them to expect as a result of their modified behaviours.

This chapter starts by mapping out some of the areas of lifestyle change after MI that are likely to be relevant to patients and that health professionals might want to consider when trying to engage patients in secondary prevention. It then focuses on adherence to medication as a lifestyle change that may appear relatively straightforward from the perspective of health professionals (‘just make sure you take your pills’) but which many participants in this study experienced as a significant burden with far-reaching implications for other areas of their life.

Individual receptiveness for health promotion messages

Most participants in this study described high levels of motivation and adherence to medical advice during the early period following their MI; they felt responsible for their future health, and described the belief that they could actively do something to reduce their risk of a repeat attack as empowering. This man described how his adherence to medical advice and search for information were driven by his desire to ‘fight back’.

I think especially in the first year because you really are doing absolutely everything you’re told to, everything the consultant said to do and more. Everything you’ve read because it’s your way of fighting back. And you pick up every leaflet about heart attacks and look up things on the Internet about angiograms and stents and, but that’s like empowerment, it means that you know this heart attack struck you down but now you’re going to do something about stopping having another one.

HA11, male, MI in 1999 aged 42 years

However, patients who struggle to accept the diagnosis and have a strong sense that they ‘did not deserve this’ may need support to help them adjust emotionally before they can contemplate behaviour changes aimed at secondary prevention. This man took little notice of health promotion messages after experiencing his first MI in his forties, because he found it impossible to reconcile his self-image with being an MI patient.

Because I was quite young, [the MI had] very little [impact on me]. I still hadn’t got over the – if you like, I know I was 40 but as a younger man, as with most younger people, you consider yourself immortal, you’re not ever going to die, nothing can hurt you. I suppose there was still an element of that in my behaviour. In fact you tend, I tended to go the other way, that ‘don’t be silly, I can’t have had a heart attack, I’m going to prove them wrong’. Hence you carry on smoking, hence you don’t reduce your workload and you, you tend effectively to continue, once you get over the initial trauma, you tend to continue your lifestyle exactly as it was.

HA08, male, MI in 1989 when aged 40 years

Return to work or (early) retirement?

The majority of participants in this study were retired from work at the time of interview, but the study included some who had returned to work weeks or sometimes months after their MI. A few had decided to take early retirement following their MI and a couple of others had initially returned to work but found that it had proved too strenuous for them to carry on. It seems important to consider patients’ work status and their feelings about work and retirement when discussing secondary prevention. Several patients said that they felt stress in their job had contributed to their MI. Those who continued in employment sometimes felt reliant on their employers’ good will to allow them a staggered return to their previous workload or time off to attend cardiac rehab schemes.

This woman was grateful that her employer allowed her to return to her job in a gradual fashion.

[My employer was] shocked but very supportive. But they were really, deeply shocked because I’d worked hard for my company for like a good 5 years I’d been there so I’d worked hard. I knew what I was doing and I knew my job and I worked, I did my job well so when I sort of like left to have a heart attack they had to get like somebody else to replace me but they didn’t replace me with one, they had to replace me with two. So that’s how hard I’d worked for them. But they were very supportive to me and they put me on like full pay for all the time that I was off. And obviously, they just wished me well and didn’t want me to go back until I was ready and now they’ve changed my hours so I only work part-time hours at the moment. And you know, I’m slowly building myself back up to do more hours, you know, as time goes by. So at the moment I only do 21 hours a week but I’m slowly building that back up so they’ve been, they’ve been absolutely great. And they’ve sort of like worked my hours around like my hospital appointments and my rehab classes so I must say that they have been brilliant.

HA33, female, MI in 2003 aged 36 years

Several patients of working age said they were concerned about being perceived as ‘disabled’ following their MI and how this might affect their longer-term prospects. Especially younger people of working age and/or with caring responsibilities may struggle to adjust their activity schedules in a way that allows routine integration of health-promoting behaviours. Conversely, suddenly having ‘too much time on your hands’ after MI might also be experienced as difficult and depressing (see also Part 6: the emotional impact of myocardial infarction for patients and their families). One woman talked about her difficulties adjusting to a less busy schedule and finding a new purpose as secretary of a support group after taking early retirement from work following her MI.

When I came out of hospital, I couldn’t settle. I took up cross-stitch, that was a waste of time. I took up making aromatherapy stuff, I was doing all these potions, that was a waste of time. I just couldn’t, I couldn’t settle and I needed to do something because you’ve been busy all your life and you’ve always been active and all of a sudden you’re not doing anything. And I was taking on all these different, and then I says, ‘I think I’ll buy a computer’ and my husband says, ‘look you’ve been buying all these other things which are cheap,’ he said, ‘but a computer is expensive just for a couple of weeks’. I says, ‘no, I want a computer’. So he bought me a computer and I love it, I’ve been using it now for about 4 years and I love it. I am now the secretary of the support group and I do the newsletter and I, you know do all these things. I keep myself quite busy doing things on the computer. I’m quite proud of myself.

HA03, female, MI in 2000 aged 53 years

Many participants in this study had used their experience of MI as an opportunity to reassess their previous lifestyle, had considered the things most important to them and embarked on new projects as a result. This meant that for them, making lifestyle changes such as the adoption of a healthier diet, learning relaxation techniques and engaging in regular physical activity were embedded in a more far-reaching reorientation of their everyday lives. These participants experienced making lifestyle changes for the most part quite positively, as self-directed efforts towards reaching outcomes that they saw as both personally achievable and worthwhile. They were enabled to do so by having good financial, family and peer support, often in the form of ongoing engagement in support groups and regular follow-up care (see also Part 9: building a supportive environment: myocardial infarction patients’ ongoing support needs).

This man initially felt very angry at his forced retirement, but he retrained as a cardiac rehab instructor and successfully managed to build a whole new career with support from his wife and perceptive health professionals who recognised his potential.

I would never have thought that I had the inclination to do some of the things that I do [now]. I was quite angry at first that I’d had to give up [work]. It was a decision that was made for me and I really was quite upset that I had to stop before what I thought was the time I should. I really felt I’d got more to give and I could do more. [. . .] After I was retired, and after a few months of just walking around, doing jobs in the house, getting fed up, I heard about a course of training you can do to get qualified in what they call ‘GP exercise referral’. So I took the course and passed it and when I got back, I was put in touch with the local primary care trust, who asked me to write a scheme for a rural exercise programme, which I did in conjunction with the local surgery and we decided to put on an exercise scheme for people who’ve had heart attacks, bypasses and so on, some years ago who had stabilised and this would be a form of secondary prevention. So I started that nearly three years ago and patients are referred from the surgery. It’s grown quite considerably over that time; we have about fifty patients who come to the classes. I do three sessions a week. Now that my wife’s retired, she comes down and helps as well.

HA23, male, MI in 1998 aged 49 years

Patients’ information and support needs around medication

Qualitative research on the reasons why patients might choose to discontinue prescribed medication has identified adverse effects that are painful and/or interfere with daily life as the most common reason. Other reasons include confusion about why a treatment has been prescribed or of how best to take it, the cost of medication, mistrust in medicines or the health-care system more generally and preferences for alternative therapies. 128 If patients’ information and support needs around taking medication are addressed they may promote better adherence to prescribed treatment regimens.

Acceptance of the burden of medication as the price for improved cardiovascular health

Many participants in this study had experienced adverse effects from the medications they were prescribed at some point after their discharge from hospital. For some, having to put up with the unpleasant side effects had become an accepted part of their life after MI – the lesser of two evils.

I also experience a number of minor reactions; my digestion is upset most of the time to the point of threatening to become inconvenient – I have a small supply of anti-diarrhoea pills just in case but have not yet had to use them; for a good part of the day my fingers are white and cold due to a restricted blood supply but other parts are quite the reverse. Unfortunately this is principally my nose, which lights up like I’m a bottle-a-day man. Apart from the coughing it’s all minor stuff that doesn’t interfere with my life. It’s a small price to pay and I’m not complaining.

HA04, male, MI in 2002 aged 62 years

I’ll have to take [these tablets] for the rest of me life which I’m quite happy to. You know if you came along now and said ‘look, here’s a pill that will guarantee if you take this pill every day you won’t have a heart attack,’ I’d take it. I’d take two. But, there we are. And I know that they don’t guarantee you don’t have one, they’re just helping my blood pressure and my cholesterol.

HA01, female, MI in 2003 aged 63 years

Understanding what medication does and why it is necessary

Most participants in this study had to take 3–5 different pills or sprays several times a day following their MI. Integrating the taking of medication into their daily routines was often achieved with the help of aide memoirs and/or the support of a spouse.

I have a lot of medication, blood pressure and a number of things which fortunately don’t seem to result in any side effects which is a big plus and [my wife], she sees it as her function in life to make sure that I take it. And I do naturally take it in the morning, I take some in the morning as part of my usual routine, shaving and, yes I do shave, and cleaning teeth and so on, and in the evening when we have supper, except then I sometimes forget, but she doesn’t [laughs].

HA09, male, MI in 1995 aged 69 years

Many participants said that they did not like taking their medication, but that they recognised the importance of adhering to the prescribed regimen to keep healthy. However, over time there was a risk that the initial motivation might fade and doubts take hold whether or not the prescribed regimen continued to be truly effective.

I’m fairly organised and methodical and so they [pills] sit on the breakfast table and I always remember them in the morning. We’ve only missed them once in the evening; we’d been out for the evening and we just, well we felt tired and we just went straight to bed. Apart from that I’ve been taking them faithfully. But I said to my wife the other day, I can understand people who would get fed up with taking the pills on a long term basis because this is . . . well 9 months now that I’ve been taking these pills; five a day and you do get fed up with it and you think ‘oh what are they doing?’, you know. ‘Is it doing me any good?’

HA14, male, MI in 2003 aged 51 years

A few patients talked about how they had appreciated being thoroughly briefed at discharge, both verbally and in writing, about the kinds of medicine they needed to take, what each medicine was supposed to do and why this was important. However, there were also several participants whose information needs had not been fully met and who worried about whether or not the combination of medicines they had been prescribed were appropriate for their particular situation. Patients who studied the leaflets supplied with prescription medicines were at times left with more questions than answers, and even those who had an opportunity to raise their concern with a health professional did not always manage to receive answers that they felt were sufficiently in-depth and reassuring.

But this Atenolol is supposed to, I said ‘What’s this for?’ I asked them what it was for and they said ‘It’s to slow your heart rate down’. I said ‘But I’ve got a slow heart rate,’ and you know, I don’t know anything about the medicine and I’m just doing what they tell me.

HA13, male, MI in 2002 aged 70 years

A few participants who felt unsure about why they had been prescribed a particular drug, or whether or not the drug actually showed any beneficial effects, talked about feeling less committed to taking it. This woman was unconvinced about the need for an additional drug that she was concerned might negatively affect her blood pressure.

I’m taking all the heart pills as I said, I don’t know about this Reduxal because it puts your blood pressure up, doesn’t it, but I told her [GP] this, I’ve talked to her about it and she said it’s fine. But it, I can’t see the point of taking it to be honest. I mean I have told her this and she said ‘Well just try it for 3 months,’ which I am doing. But I’ve got a packet there and I haven’t touched them yet so when I go back to see her on the 22nd I’m going to say to her, you know.

HA01, female, MI in 2003 aged 63 years

Symptom or side effect?

Some participants said they found it difficult to know whether to attribute the symptoms they experienced to problems with a particular type of medication, to the range of sensations that should be regarded as ‘normal’ after MI or possibly to an unrelated health problem. They valued follow-up care with health professionals who would take such worries seriously and work with them to find a treatment regimen that might suit them better, as well as pursuing further investigations.

Sometimes I get pins and needles in my feet, and a few aches and pains which I didn’t have before, but whether that’s the tablets or my age, I don’t know. But I did read a leaflet about the blood pressure tablets and it did say that sometimes you get tingling in your feet or your hands. So I’ve put that down to the tablets.

HA01, female, MI in 2003 aged 63 years

However, a couple of patients had struggled to make their GP or consultant understand that a problem that might not be particularly threatening from a clinical point of view could still cause a great amount of personal distress. This woman felt frustrated that after checking that her hair loss was unlikely to be indicative of a serious underlying health problem, her doctor did not feel the need to find an alternative to the medication she suspected to have caused it.

The doctor did say she would do some blood tests just to see if there were any other reasons why my hair was falling out. I think she did some calcium and some iron checks and some other bits and pieces, all of which are normal. So it’s obviously not any other reason so I’m assuming it’s the medicine I’m actually taking. [. . .] The main worry is that if it continues to fall out. I need the medicine for my heart and the doctor said, ‘Well when you stop taking the medicine the hair will grow, it’s not as if it’s a condition where the hair will not regrow back again’. Well, okay it will regrow back again but as long as I’m taking the medicine, it’s not going to regrow back again. So I’d really like to find something to give my hair a chance to regrow back so that I can see if in fact it was going to come back.

HA22, female, MI in 2003 aged 63 years

Shared decision-making, treatment preferences and expert patients

Some of the participants in this study who had been taking medication for several months or years appeared very well informed about possible side effects and drug alternatives. Through participation in support groups and conversations with other MI patients some had become conscious of the risks of polypharmacy (e.g. when they had been prescribed medication for an acute problem that had the potential to interfere with their regular medicine). This woman described how she had become more involved and vigilant about her prescribed medications since her MI.

Like I went to the doctor with this bad chest. I’ve had this cough for three weeks now and I saw him yesterday and I said ‘I can’t breathe,’ I said ‘I don’t know whether it’s my heart or my chest’ and he listened and he said, ‘Oh it’s probably your chest infection’ and he gave me some tablets. Now you see, I get the leaflet out now as soon as I get these tablets – ‘should I take this, what will happen if I take this now?’. So I’m then back in and I’m asking him and he’s saying ‘no it’s okay, you can take your tablets with . . .’ whereas before I would have just taken them. I wouldn’t have read the leaflet. But I do now. I study it very carefully.

HA01, female, MI in 2003 aged 63 years

For MI patients with complex medication regimens, increased involvement in treatment decision-making with non-cardiac health professionals is thus likely to have importance beyond the accommodation of patient preferences as a safeguarding strategy to avoid detrimental drug interactions.

Most patients accepted that there was going to be a trade-off between effects beneficial to their cardiovascular health and undesired side effects. However, they valued health professionals who invested effort into tweaking this balance in favour of reducing the burden of medication on their patients.

There was one beta-blocker I couldn’t take, it was making me really poorly so they had to work really, you know to find one that would suit me. But I think they’re pretty good, if you’re having problems with your tablets, that you go back and say, ‘this isn’t suiting me’ there’s always an alternative. There’s always an alternative to the drugs so you know, you don’t have to suffer side effects; there’s always something else.

HA03, female, MI in 1998 aged 53 years

Participants in this study were conscious that it might be dangerous to experiment with stopping or changing medications by themselves. Several reported very positive experiences with health professionals who were responsive to their dilemmas. This man was grateful to have a consultant who took seriously the problems he had been experiencing with a particular drug and was willing to take the risk of him discontinuing the medication – a decision that he felt had much improved his quality of life.

The drug was called amiodarone. And I felt that the side effects of the drug were in my case worse than the ailment it was treating. So some three months ago, I appealed to the surgeon to look into taking me off of the drug, or at least considering whether I could manage without the drug. And it was decided that since I had the mechanical protection if you like, given by the defibrillator, it would be worth trying to survive without taking this particular drug and I have to say I’ve been in excellent health and spirits ever since. Better spirits because I felt that after coming off of the drug, whether it be part in my head or not, that my mental functions were improved. I didn’t feel as sluggish, I didn’t feel as though I’d lost the ability to think and I found that my memory improved, all of which I found were very noticeable to me personally. Whether this is just me, or whether these are side effects that I am not aware of, I’m not sure.

HA08, male, MI in 1989 aged 40 years

However, in a few cases health professionals insisted on patients ‘giving it a go’ before they were willing to change prescriptions. One man who described himself as ‘having done an awful lot of reading around the problem’ including recent research literature on medication, took the initiative and suggested to his GP that he should be put on an angiotensin-converting enzyme (ACE) inhibitor. His GP followed the suggestion, but was reluctant to let him choose the type of ACE inhibitor at first.

A lot of the ordinary ACE inhibitors will give you a slight dry, irritating cough and when I first suggested to the GP that I should be on an ACE inhibitor, he gave me one of the standard ones and I said, ‘I don’t think that’s a good idea’. And he said, ‘Why?’ and I said, ‘because it’ll give me a dry cough’. And he said, ‘Well try it first’. So a month later I went back and I had the cough so we changed it. That’s not me being clever, it’s just that perhaps I’ve done more reading about it than [the average person].

HA23, MI in 1998 aged 49 years

Clinical necessity and personal meaning of medication

Many participants in the study had been prescribed a nitrate spray to use in case they were experiencing sudden chest pains. While some of them had to use the spray quite regularly, others rarely had any need for it. Nevertheless, the spray fulfilled an important function for them as a ‘safety blanket’ that they carried with them wherever they went – just as many of them said they made sure to always carry a mobile phone.

I feel very reassured by taking the spray, having it with me all the time, you know. [. . .] I was saving it up to start with to sort of for the very, very bad attacks and now I just use it for a mild attack of angina which is what it’s there for really. And I’ve asked the doctor about it and you know I said to him, ‘Does this do any harm?’ and he said, ‘Oh no that’s what it’s there for, it just opens the vessels for a time, just so the angina passes’. And I said, ‘Oh well all right’ and I use it a bit more freely.

HA14, male, MI in 2003 aged 51 years

One man, who initially was told that he was unlikely to need such a spray, but had read up about it in the written information he received at discharge, was grateful that his GP agreed to give him a prescription for additional reassurance.

The medication I’ll be on for life. I mean the cardiac rehabilitation nurse was able to explain, rather somewhat more than maybe the doctors had, some of the implications of those medications. But the other thing that he was stressing and which the booklets tended to stress was GTN [glyceryl trinitrate], which is a spray that you put behind your tongue in the event of pain and discomfort. Anyway, there were very sort of strong messages both on paper and verbally. So when I came to being discharged from hospital, I mean you’re supplied with a month’s medication by the cardiologists, the doctors, I was surprised that I didn’t have any GTN. And I asked the registrar, the specialist registrar why and he said ‘well there’s no indication that you need it because you haven’t had pain and there’s nothing else’ and I said ‘well you know, because there’s such an accent put upon it couldn’t I have it as a comfort blanket?’ and therefore what he suggested was that I just ask my GP for it, which in fact we did on the way back from the hospital.

HA02, male, MI in 2003 aged 54 years

Myocardial infarction patients’ experiences of follow-up care

Previous qualitative research has suggested that post MI patients want more consistent follow-up care and ongoing support for help with making lifestyle changes; to meet people with similar experiences; to have regular access to health professionals with cardiac expertise; and to provide reassurance to partners and family members. 129

Follow-up care arrangements varied greatly for participants in the study. While some participants continued to see their hospital consultant at regular intervals for several months, for others their GP became their main point of contact for voicing any concerns about their symptoms or requesting changes to prescriptions. Many patients reported very positive relationships with their GPs.

I have a brilliant GP. I’d vouch for him anytime. He’s caring, he listens, he talks, he checks. If there’s anything wrong he’d send you for an X-ray or anything like that, you know.

HA06, male MI in 1996 aged 70 years

Especially in the early days after discharge from hospital, participants appreciated having access to a designated health professional with specialist cardiac expertise who they were able to contact with concerns or questions between appointments. This woman praised the dedication of her cardiac nurse who phoned her back to check on her well-being.

The rehabilitation Sister’s been my lifeline. I’ve been able to phone her, she’s been phoning me and she’s, to make sure I’m all right when I’ve come home, and things like that. [. . .] And when I had the funny heartbeat I’d phoned her the day before and she’d phoned my GP and I’d seen my GP but he said I was, I was all right. But 9 o’clock the next morning the rehabilitation phoned me and said, ‘how are you?’ and I said, ‘I’ve still got this funny heartbeat’ and she says, ‘come in now’. And she was there like when I got there at the hospital, she’s been a lifeline.

HA03, female, MI in 1998 aged 53 years

Cardiac nurses were usually the health professionals who aided the transition from hospital to home.

I lived by that [the heart manual] for six weeks when I was at home and again saw the doctor every couple of weeks and then I went in to see the cardiac nurse as well. I could ask her lots of questions; [my wife] and I, we both went in to see her, and came out with a few of the answers and a few don’t knows but you know it helps to be able to talk to somebody who has been in the same situation or been with, been with other patients and that was good.

HA14, male, MI in 2003 aged 51 years

Having health professionals proactively checking up on discharged patients may help to reduce barriers towards help-seeking if patients experience symptoms that might suggest a repeat heart attack.

This man felt that having to wait for 3 months for his first specialist appointment after discharge was too long and this caused him and his wife some anxiety.

I then had come home and I’d sort of got an appointment, this was in March and my appointment was for July to see a specialist, which I thought was rather a long time. It was more concern to my wife, I mean she was very worried [um], I couldn’t go out of her sight really. I had to go and buy myself a mobile phone which is something, I don’t want a mobile phone but I always had to carry this mobile phone. And if I was out of her sight more than a minute or two, she was worried about it and I thought well we, I ought to be doing something sooner about this. So we tried to contact the specialist, to say, ‘well it’s a long time July, after a heart attack, to worry about is it going to come back, am I going to get it again’. And I really hadn’t got a great deal of information to work on at this point.

HA12, male, MI in 2003 aged 65 years

In some cases, communication between primary care and consultants at the hospital could be a source of uncertainty, as some participants said that they felt unsure about how much and what kind of information they could rely on to be exchanged between the two systems.

This man was concerned that his GP had decided to treat him with statins even though his cholesterol levels had not been checked in a primary care setting, so he was left wondering whether this was a ‘blanket’ treatment for MI patients or based on actual test results that had been communicated without his knowledge.

The one thing that does surprise me a little bit about the management of the condition I’ve got is the lack of blood tests. In terms of monitoring anything, because some of these problems can be explained by lack of magnesium or overactive whatever thyroid or again cholesterol level, I mean they’ve put me on a statin, but unless I’d been in hospital with a problem they’ve never checked my cholesterol level.

What is it? Why am I still on the statin? That sort of thing. Now, through my GP I get it checked once a year, and I don’t know if they pass that onto the hospital. Every time, they’re interested in my cholesterol because they think I’ve, because of all of this I must have had a horrendous cholesterol level.

HA05, male, MI in 2001 aged 37 years

In contrast, this man explained why he was very satisfied with the follow-up care he had received from his GP and the hospital consultant.

First of all [my GP] seemed to be pretty adept at prescribing the right medication for me. Secondly, I generally only went when I or my wife, usually my wife, felt that something wasn’t quite right and I ought to see doctor X. And so an appointment would be made and doctor X would look at all the papers and look at all the, you know, did some tests and said ‘there’s nothing much wrong with you, you know, you’re alright, you’re doing pretty well’. Might make a few adjustments to the medication and you know that made me feel, you know, better. Also a good thing was that my GP, who’s just here in the village, and doctor X work very well together. There was no professional politics going on which sometimes happens. And my GP was perfectly content to accept doctor X’s prescriptions or his, his recommendations and so on. But now, for some time now, I’m no longer consulting doctor X, (a) he’s moved out of the area and (b) there’s no need.

HA09, male, MI in 1995 aged 69 years

Another man said he had found it useful to write down the list of medications he had been prescribed so he could share this information with his GP without having to worry that he might forget something.

I wrote down everything that had happened to me, typed it up, the tablets I was taking and when I took them and whatever because it was so much easier when you go and see a doctor and we all feel a bit confused with the whole thing, I can refer to it or pass it across to him.

HA12, male, MI in 2003 aged 65 years

The Health Experiences Research Group interview collections

The qualitative data in the HERG archive were collected as national, purposively sampled interview collections which aimed for maximum variation. The interviews were all collected by experienced qualitative social scientists working with the HERG in Oxford. There are currently over 75 collections of interviews, each concerning a different health issue (ranging from pregnancy to living with a terminal illness) and each set comprising 35–50 interviews. All interviews are tape recorded, transcribed, checked by the interview participant and copyrighted for a number of non-commercial purposes, including secondary analysis and publication.

The projects all share a research question (What are the experiences and information and support needs of people with healthy condition X?) and a common interview method that starts with an appropriate variation on an open-ended question intended to invite a narrative response (e.g. ‘Could you tell me all about it from when you first thought there might be a problem?’). When the person has completed their account, a semistructured section of the interview includes questions and prompts about any issues of interest that may not have been fully discussed in the narrative. These typically include questions about treatment decisions, information, support, communication with health professionals. All participants are asked if they have anything that they would like to tell other people who are starting out on the same journey and if there is anything they would like to pass on to NHS staff at all levels, who might learn from the participant’s experiences. These questions often add rich, informative data about how services and communication could be improved. 64

Each of the interview studies starts with a literature and field review and sets up a specialist advisory panel including patients, professionals, researchers, clinicians, and representatives from the voluntary sector and (if appropriate) the funding body. The panel advises on the parameters of the project, including selection and recruitment of participants.

A maximum variation sample15 of 35–50 people is sought to help generate as diverse a sample as possible, including both people whose experience might be considered ‘typical’ and those with more unusual experiences. For each project, recruits are actively sought through a national network of primary care staff, hospital consultants and specialist nurses, advisory panel members, local and national support groups, advertising online and in local newspapers, snowballing through participants and personal contacts. Analysis and data collection proceed simultaneously and continue until ‘data saturation’ is reached to ensure that the widest practical range of experiences has been included.

Qualitative secondary analysis

A modified framework method was used. 37 This approach uses charts for a summary description of data from each of the interviews across a set of categories, which are later developed into themes for analysis. The process is iterative and flexible enough to accommodate both categorisation of data in terms of pre-existing ideas and organisational principles that have been identified as important to answer the questions at hand (e.g. areas of care that have been identified in the guideline scope) as well as emergent themes that participants themselves identify as relevant and important (e.g. experience of the hospital environment). Anticipated and emergent themes are then compared across cases, and will eventually be compared and collated across the different data sets to identify general and specific aspects of good-quality care.

Coding of the MI interviews proceeded by identifying vignettes from participant narratives that described aspects of the health care they had received and organising these into thematic clusters loosely based on the care pathway for MI. Vignettes were simultaneously coded for emotional response and emotional valence and cross-indexed with recurrent themes in patients’ experience of health care identified in previous literature,9 such as communication quality, trust and confidence, relationships with health professionals and care-givers, information and support needs and preferences, decision-making, autonomy and consent.

This process was supported by NVivo^® qualitative data analysis software, which eased the systematic collation of the full range experiences across cases for each of the examined domains (care pathway, emotions, aspects of care, patient evaluation). Findings were structured into nine sections and written up, illustrating key points with verbatim quotations from patients wherever possible.

Inhaler devices

• A ‘rainbow’ of inhalers described, routinely referred to by colour.

• More information on what each contains, generic and brand names, how it works and what it is for (preventer, short- or long-acting reliever, combination) could help.

• Good inhaler technique is essential; specialist asthma nurses can demonstrate and check technique and find alternative delivery modes for those who find standard inhalers difficult.

• While some report rigorous adherence to their preventer inhaler regime, others see it as something to reduce or stop when their symptoms are back under control.

• All patients should be advised on stepping treatments up and down, and advised that inhaled steroids do not carry the same risk of side effects as oral steroids.

Management of acute asthma

• Best strategy to take action before it gets to attack level. Some patients negotiated with their GP to keep pre-prescribed steroid tablets at home for emergency use, and valued this trust in their ability to self-manage. Some also keep a peak flow monitor at home to help them judge when to seek help (but see patient education below).

• Encouragement needed for people to call ambulance or go to A&E and not feel they are misusing care, and information on timing this.

• Greater clarity needed for both professionals and patients on what is a panic attack and what is an asthma attack.

• People report leaving deteriorating symptoms too long hoping they can continue to self-manage and ending up using more hospital resources as a result.

• Ambulance care generally good. A&E variable – some well-prepared to deal swiftly with asthma patients, others less so, and sometimes staff do not listen to what patient knows of own their condition. When in hospital for another condition, ward staff may not understand asthma.

Insulin regimen, monitoring and injecting devices (pumps, pens, etc.)

• Both fixed and more flexible insulin regimes may suit patients’ lifestyles at different developmental ages. A fixed regimen can give a greater sense of security especially in the initial months after diagnosis.

• Be mindful that the increased freedom of switching to a more flexible regimen as the patient gets older might provide a particular risk period for the development of eating disorders.

• Administering injections by themselves can provide young patients with a sense of control and independence and is usually experienced as less painful. However, a few young people may require psychological support to overcome fears of injecting themselves. For those diagnosed at an early age, transfer of responsibility for injections may present a key site for tensions around children’s growing sense of independence.

• Patients and families report having to rely on support groups and other sources external to the diabetes team to access information about insulin pumps. Novice pump users value peer support from more experienced pump users.

Management of hypoglycaemia

• Despite awareness of its treatment, many patients and families regard hypoglycaemia as the most difficult aspect of diabetes to come to terms with emotionally. Some young patients report that they may keep glucose levels intentionally too high to avoid hypos.

• Fear of hypos may lead to overly anxious or controlling behaviours on the part of patients and parents.

Management of hyperglycaemia

• Some patients perceived clinicians as putting too much emphasis on hypos at the expense of discussing hyperglycaemia and its consequences.

• Ketosticks enable patients to self-monitor for ketoacidosis and may make them feel more in control.

• Appreciate the impact of ‘highs’ and ‘lows’ on patients’ mood, compounding ‘normal’ teenage moodiness.

Transition to adult services

• Flexible consulting structures within paediatric diabetes teams allow patients to gain greater independence stepwise, i.e. the option to consult individually on confidential concerns with the DSN or dietitian while continuing joint visits with parents to discuss less sensitive issues.

Communication

• Young patients and families value clinicians with a flexible communication style that is responsive to children’s individual development.

• Teenagers are likely to disengage from the consultation when talked about in the third person, while younger children may feel put ‘on the spot’ when addressed directly. Attempts at involvement need to feel genuine to the young person.

• Younger children may be afraid to ask questions of their own but respond well to having information provided at their level of understanding.

Examination

• Young patients appreciate clinicians treating their bodies with the same respect as adult patients. Female patients may be particularly sensitive to lack of privacy when having their weight measured and recorded.

The Health Experiences Research Group interview collections

The qualitative data in the HERG archive are collected as national, purposively sampled interview collections which aim for maximum variation. The interviews are collected by experienced qualitative social scientists working with the HERG in Oxford. There are currently over 75 collections of interviews, each concerning a different health issue (ranging from pregnancy to living with a terminal illness) and each set comprising 35–50 interviews. All interviews are tape recorded, transcribed, checked by the interview participant and copyrighted for a number of non-commercial purposes, including secondary analysis and publication. The research is funded via a peer-reviewed process by bodies including NIHR (Research for Patient Benefit), and research committees of voluntary organisations (including Arthritis Research UK, Welcome Trust, Marie Curie and the Economic and Social Science Research Council).

The projects all share a research question (What are the experiences and information and support needs of people with health condition X) and a common interview method that starts with an appropriate variation on an open ended question intended to invite a narrative response (e.g. ‘Could you tell me all about it from when you first thought there might be a problem?’). When the person has completed their account, a semistructured section of the interview includes questions and prompts about any issues of interest that may not have been fully discussed in the narrative. These typically include questions about treatment decisions, information, support and communication with health professionals. All participants are asked if they have anything they would like to tell other people who are starting out on the same journey and if there is anything they would like to pass on to NHS staff at all levels, who might learn from the participant’s experiences. These questions often add rich, informative data about how services and communication could be improved. 64

Each of the interview studies starts with a literature and field review and sets up a specialist advisory panel including patients, professionals, researchers, clinicians, and representatives from the voluntary sector and (if appropriate) the funding body. The panel advises on the parameters of the project, including selection and recruitment of participants.

A maximum variation sample15 is sought to help generate as diverse a sample as possible, including both people whose experience might be considered ‘typical’ and those with more unusual experiences. For each project recruits are actively sought through: a national network of primary care staff, hospital consultants and specialist nurses, advisory panel members, local and national support groups, advertising online and in local newspapers, snowballing through participants and personal contacts. Analysis and data collection proceed simultaneously and continue until ‘data saturation’ is reached to ensure that the widest practical range of experiences has been included. Analyses of the data have been published in peer-reviewed journals, for example Shariff et al. 131

The interview sample for rheumatoid arthritis

Narrative face-to-face interviews were conducted with 38 people with RA in 2004–5. In 2012, following evaluation of the website www.healthtalkonline.org, the project was updated and another 14 interviews were conducted to include more interviews with younger people with RA and experiences of biologic therapies.

The sampling method seeks to achieve representation of the diversity of experiences, rather than numerical representation (so it is not appropriate to present results numerically). Fewer men than women were interviewed, four of the interviewees were from minority ethnic backgrounds, 34 were living with a partner or spouse and 18 lived by themselves.

Age at interview ranged from 21 to 78 years (average age 47 years). Age at diagnosis ranged from 5 to 74 years (average age 35 years). Duration of living with the condition ranged from very recently diagnosed to 46 years (average duration 12.5 years). The diversity in participants’ ages and length of illness experience made it possible to explore how the experience of RA and patients’ information and support needs may differ at different ages and what adjustment to living with RA might require practically and emotionally at different stages of the life course.

Experiences of medication reflected the diverse severity of the condition across individuals and time periods and included treatment with DMARDs, steroid tablets, injections and intravenous pulses, biological treatments (anti-tumour necrosis factor and B-cell therapies), as well as management with analgesics and non-drug treatments. Twenty participants had experience of surgery and another two were waiting for an operation at the time of interview.

Methods of qualitative secondary analysis

A modified framework method37,64 was used. This approach uses charts for a summary description of data from each of the interviews across a set of categories, which are later developed into themes for analysis. The process is iterative and flexible enough to accommodate both categorisation of data in terms of pre-existing ideas and structures (e.g. areas of care as identified in the draft quality standard for RA) as well as emergent themes that participants themselves identify as relevant and important (e.g. concerns about disability and disfigurement). Anticipated and emergent themes were compared across cases, and will eventually be compared and collated across the different data sets to identify general and specific aspects of good-quality care.

Coding and analysis of the RA interviews was supported by NVivo^® qualitative data analysis software, which eased the systematic collation of experiences across cases relevant to the areas of care identified in the QS draft.

Findings were grouped under the 11 proposed QS statements and cross-referenced with other areas/statements where applicable.