The measurement of patients' expectations for health care: a review and psychometric testing of a measure of patients' expectations

Search strategy

A multiple search strategy was adopted. A comprehensive, systematic search of the conceptual and empirical literature on patient expectations, across the clinical and social sciences, was conducted using the following databases: AMED (Allied and Complementary Medicine Database), ASSIA (Applied Social Sciences Index and Abstracts), British Nursing Index (BNI), CINAHL (Cumulative Index to Nursing and Allied Health Literature), The Cochrane Library, EMBASE, MEDLINE, PsycINFO, Sociological Abstracts, Intute, Web of Science and the HTA (Health Technology Assessment) reports. The electronic database search strategy was developed using medical subject headings (MeSH) terms and keywords, augmented by the inclusion of keywords used in studies as they were identified. No design filters were used.

We searched for any type of literature published or written between 2000 and 2009, and for reasons of practicality we searched only for publications in the English language. In the following databases, the term ‘patient expectation OR patient expectations’ was searched: ASSIA, The Cochrane Library, Intute (Social Sciences and Medicine), Sociological Abstracts and Web of Knowledge. In the remaining databases a number of terms, synonyms and subject headings for ‘patient expectations’ and ‘health care’ were used (see Appendix 2). In addition, the following databases were also examined to retrieve any unpublished or grey literature: Index to Theses, Dissertations & Theses and OpenSIGLE (System for Information on Grey Literature in Europe).

AB and MW conducted the database search design and searches, selection of abstracts and papers, AB wrote the conceptual review, SAF wrote the narrative reviews (AB also conducted some).

Study selection

The process of developing the search criteria was used to construct inclusion and exclusion criteria and so to determine the relevance of the evidence retrieved to the study aims. The search was not restricted to particular definitions or conceptualisations of expectations or type of site/setting. Broad inclusion criteria allowed a variety of studies to be reviewed, including theoretical and discussion papers, observational and interventional studies, randomised control trials, systematic reviews and meta-analyses. Because of time and budget constraints, only papers published in English were included.

Assessing relevance and inclusion

The titles and abstracts identified in the search were initially perused by AB to determine whether or not the articles were relevant to the research aims (i.e. the topic focused on patient, and not health-care staff, expectations). These results were sent to an independent researcher (GR) for checking. If criteria of relevance were met, the full-text article was obtained and assessed for inclusion.

Data extraction and quality assessment

A proforma for the included papers was developed by SAF and AB, after piloting, to enable recording of the following data: study design, conceptual basis, measurements, results and methodological quality of qualitative and quantitative studies.

The assessment of methodological quality in social research is complex, partly because of the wide range of qualitative and quantitative research methods used. For this study, criteria of quality included a clear description of the aims and underpinning theory and robustness of methods (e.g. sample type/size, design) and measurement (i.e. validity), where appropriate. Meta-analysis was not appropriate because of the wide range of study designs and types of samples. We thus undertook a narrative synthesis, using a framework analysis, to compile diverse evidence.

Expectancy constructs

In those papers in which the expectancy constructs had been discussed, some were comprehensive reviews of existing theories,66,85,105–107 whereas most empirical research applied the social cognition theories of outcome expectancy and self-efficacy. The particular theories of Bandura and Thompson and Sunol, as described earlier in the conceptual overview, were frequently adopted as a basis to the research presented. 19,70,74,82,88,131,153,165,173,195,199,234,251,270

Using Bandura’s related but conceptually independent factors of physical, social and self-evaluative outcome expectations, Wójcicki et al. 70 developed a scale that measured outcome expectations for exercise and tested it with older adults. Their analysis provided evidence for initial factorial and construct validity of the Outcome Expectations for Exercise Scale. Janzen et al. 19 published a non-systematic review of selective expectancy models. They reviewed Thompson and Sunol’s conceptual framework (see earlier conceptual review), which identified four types of expectation: ideal (desired or preferred outcomes), predicted (actually expected outcomes), normative (what should happen) and unformed (unarticulated). This model was explicitly designed to examine the role of expectations in the formation of satisfaction. A limitation of this model is that it does not adequately address actuality. These authors questioned whether or not these expectations bore any relationship to each other. Emphasis was on the cognitive, affective and behavioural outcomes of the expectancy process, rather than on the process of expectancy interaction itself. They concluded that the development of a health expectation incorporates several longitudinal phases: precipitating phenomenon, prior understanding, cognitive processing, expectation formulation, and outcome and post-outcome cognitive processing.

Janzen et al. ’s own, quite different social cognitive model19 was based on their review of the literature, although they found relatively little good-quality research. Their framework is a dynamic model and consists of:

• a precipitating, cognitive processing stage [an individual’s sense of subjective probability of something occurring, causality (understanding of causality between actions or events) and temporality (concepts of duration and order)]

• a sense of self-efficacy (a person’s perceived capability of carrying out specific behaviours to achieve a desired outcome), and which influences outcome expectations

• perceived expected subjective utility (impression of the personal value accruing as a result of achieving the behaviour)

• goal development (ideas directed towards future outcomes and influenced by past experiences) and

• expectancy formation (estimates of behaviours and their consequences), which was hypothesised to follow these processes.

However, as the authors themselves admitted, their model lacks empirical evidence to support it. Given that it has been shown that expectations of care are associated with recent experiences of health care, it is also likely to be important to distinguish informed expectations (in which people have received sufficient, timely information to reach an informed judgement) from subjective expectations. This indicates the importance of longitudinal analysis in the process of expectation development, although this type of research was not evident in this review.

Zebracki and Drotar153 applied the theory of outcome expectancy and perceived self-efficacy for asthma self-management among adolescents. They found that although high outcome expectancy predicted greater asthma morbidity it was unrelated to self-management or treatment adherence. The authors questioned whether or not social cognition theory is generalisable to adolescents because of psychological factors such as expectations still developing. The research had good response rates (77/80), but mainly consisted of middle- to high-income families and highly educated caregivers. Iannotti et al. ’s research165 also applied social cognitive theory to adolescent respondents. The focus of this work was to develop and evaluate measures of adolescent diabetes management self-efficacy and outcome expectations. On this occasion, the measures were developed to be situation specific and the authors recognised the need for the instrument to include not only health outcomes and physical barriers but also items that reflected social, family and personal reality. Iannotti et al. ’s research showed that high positive outcome expectations accompanied by low self-efficacy in older children was associated with the poorest glycaemic control and lowest adherence (as reported by parents). Wilcox et al. 195 drew attention to the difference between the adoption of health behaviours in social cognition models and the maintenance of health behaviours. They concluded that initial outcome expectations should be considered in combination with attainment of those outcomes in predicting health behaviour.

Kravitz125 defined expectations in terms of desires, wishes and entitlements and this framework was adopted by a number of researchers. 69,109,115,137,198,271 Fryman106 developed and tested a questionnaire on a small sample of 40 surgical patients from a single site to measure expectations of surgery for prostate disease. The questionnaire was based on the distinct concepts of wants, hopes and desires, and anticipations (predictive), stating that what is desired and what is expected in real life are distinct beliefs. Mahomed et al. 175 also focused on patients’ desires, which reflected the patients’ wishes that a given event occurred. Furthermore, Metcalfe and Klaber Moffett85 made the distinction that expectations are not hopes but the perception that a person has of the world and his or her interaction with the world, based on knowledge or information gained, irrespective of the nature and accuracy of the source.

Leung et al. ,171 following classic texts on the psychology of expectancies, argued that expectancies have been claimed to be the mechanism through which past experience and knowledge are used to predict future outcomes and refer to social cognitive theory that describes learned associations between the stimulus events, behaviours, self-efficacy, non-volitional response and outcomes; expectancies drive goal-directed behaviour, motivation and self-regulation (see earlier). They pointed out the conceptual confusion in the literature between hopes and expectations and the need for their conceptual distinction. They developed a conceptual model of the relationship between hopes and expectations, grounded in theory. They pointed out that, although both hopes and expectations are future-oriented cognitions, expectations are also distinct as they are an individual’s probability-driven assessment of the most likely future outcomes. In contrast, hopes were defined as preference-driven cognitions about future outcomes, or an assessment of the most desirable but not necessarily the most probable outcomes. They argued that social cognitive factors may moderate this relationship and that external factors may moderate the extent of divergence by influencing the probability of achieving desired outcomes.

Hundley and Ryan120 conducted their expectation research from the perspective of consumer preferences. Their theoretical basis focused on the view that consumer preference for an aspect of a service may be dependent on the availability of that attribute, which in turn will influence future expectations of care. Consumers therefore only prefer those aspects of care known to be available to them. Their research compared three different systems of intrapartum care in the Grampian region of Scotland. They discussed the influence of an ‘endowment effect’ on preferences in which respondents without experience of a service may be influenced simply by its availability. The impact of initial endowments on preferences included loss aversion, minimisation of the psychological feelings of regret and disappointment, lack of information about alternatives and whether or not respondents considered the options to be realistic. The response rate for this study was low at 40% and recruitment methods did not allow for examination of any response or selection bias.

Expectancy items

Spear’s focus groups144 listed the following as important in the development of the author’s expectations questionnaire: access to help, being treated with respect, reliable care, responsiveness, being understood and participating in decision-making. Their expectations scale was reported to be internally consistent with fair criterion validity and acceptable validity. It included items on convenience of the service, getting the help that was wanted, ease of getting help, being treated by staff with courtesy and respect, reliability of staff, speed with which services responded, waiting time, empathy of staff, whether they were listened to and kept informed, whether they were involved in treatment decisions and overall expectations. Spahr et al. 143 reported that the main expectations listed as important by parents (of children in an A&E hospital department) were to receive understandable explanations, to have possible causes of problems explained and to have a say in their care.

Dawn et al. 219 reviewed literature on patients’ expectations between 1966 and 2002 and reported that the most commonly addressed areas of expectations were medical information, medication/prescriptions, counselling/psychological support, diagnostic testing, referral, physical examination, health advice, outcome of treatment, therapeutic listening and waiting time. They conducted further interviews with a small sample of 48 parents of child ophthalmology patients and asked about their most important expectations for their child’s care. They reported that 35 different expectations were identified, classified into six categories: communication, interpersonal manner, doctor’s skill, examination and testing, logistics and various other themes. The areas most often identified as the single most important by respondents were clinical competence, interaction, education/training, explanation in clear language, information about diagnosis and a personal connection.

Escudero-Carretero et al. 223 reported on focus groups held with 31 patients with diabetes mellitus. The expectations they voiced related to health-care professionals (understanding of patients’ situation, flexibility or customised treatment, good manners, communication skills, sufficient, clear and meaningful information) and the health-care system (responsiveness when needed, readily available equipment for treatment). Greenberg et al. ’s review of the psychotherapy literature229 (methods unstated) identified the following expectancies: patient outcome, treatment, process and clinical strategy expectancies.

Expectancies, self-efficacy theory and outcomes

Outcome expectancy is the extent to which people believe they will benefit from an intervention. Price et al. 136 found some support for this, with higher outcome expectancies pre treatment being associated with greater improvements among 72 volunteers undergoing cognitive behaviour therapy. O’Malley et al. 251 also found that higher outcome expectancies significantly predicted changes in shoulder function 3 months post treatment, although the study was limited to a single clinic. Roscoe et al. 261 examined treatment-related nausea in chemotherapy patients and reported, on the basis of two small studies, that there was a significant association between patients’ pretreatment expectations of nausea and severity of nausea post chemotherapy. In Koller et al. ’s study124 of expectations, quality of life and clinical variables with a sample of hospital inpatients receiving radiotherapy, quality of life was found to be altered little by radiotherapy but became substantially worse in the group who had expected healing but perceived that this had failed (even though physician-assessed Karnofsky performance status had not changed), although the authors do note that the exact temporal sequence of healing expectations and quality of life was not tested.

Self-efficacy refers to the belief that one has the necessary ability and skills to influence a specific event outcome. Wójcicki et al. 70 restated the theory that self-efficacy expectations encompass individual beliefs in one’s capabilities to successfully execute a task and have been consistently identified as a correlate of physical activity. Delsignore and Schnyder220 reviewed 25 psychotherapy papers, published over 25 years, on expectancies and locus of control. They reported that there were three main types of therapy experience that are linked to outcomes or process variables: outcome, role and control expectancies. The last were conceptually related to locus of control. They reported on modest but significant associations between outcome expectancies and therapeutic improvement, but findings were inconsistent in relation to global expectancies and outcome. Metcalfe and Klaber Moffett85 showed expectations to be directly linked to health beliefs, self-efficacy, locus of control, attitudes and schemata, and that expectations were an integral part of the psychosocial make-up of each individual patient. They referred to a limited amount of evidence that exists to suggest that health professionals should take patients’ expectations into account when making clinical decisions and planning treatment. Others have found no such associations (e.g. with locus of control), although methodology has been weak and samples selective and small. 211

Jones et al. 234 investigated the role of patient expectations and self-efficacy in relation to adherence to gym exercise over 12 weeks (77 complete pairs of baseline and follow-up questionnaires), referring to Bandura’s theory of self-efficacy and its role in predicting health behaviour. They expected that high expectations would have a negative impact (in which people have unrealistic goals that inevitably fail). The authors reported that self-efficacy did not differentiate between exercise completers and dropouts, but completers had more modest expectations of change and came closer to achieving these expected changes than those who dropped out. However, Kalauokalani et al. ,237 from an acupuncture trial of 135 patients with chronic back pain, reported that patients with higher, rather than lower, treatment expectations had improved function post treatment. Mohr et al. 131 examined a model that included cognitive, affective, behavioural, disease and social variables as they relate to adherence to injectable medication for the treatment of multiple sclerosis. The authors found that pretreatment injection self-efficacy expectations were significantly related to 6-month adherence; however, pretreatment adherence expectations were not related to adherence. The study was limited by using single questions to measure variables, which can reduce reliability and attenuate effect sizes.

Resnick et al. 88 postulated that cognitive control of behaviour is based on two types of expectations: (1) specific outcome expectancies, which are the beliefs that a certain consequence will be produced by personal action, and (2) self-efficacy expectations, which are an individual’s beliefs in their capabilities to perform a course of action to attain a desired outcome. Their own study tested a questionnaire measuring outcome expectations for adherence to osteoporosis medication with 152 people in a retirement community (mostly female with an average age of 85.7 years). The authors reported evidence of internal consistency and validity but model fit (factor analysis) was poor. They reported associations between outcome expectations and taking osteoporosis medication.

Mitchell,107 in a review of concepts, reported that studies indicate that expectations may affect outcomes, but expectations are complex to measure as they have several components and global items may be inadequate or insensitive. Studies need to measure expectations separately and examine interactions and overlaps. Mondloch et al. 250 undertook a systematic review of recovery expectations and health outcomes limited to MEDLINE and reported that few papers met relevance or quality criteria, and that 15 out of 41 included papers, of moderate quality, provided evidence that positive expectations were associated with better health outcomes, but this depended on the clinical condition and measures used. Davidge et al. 218 investigated expectations for recovery among 138 patients with extremity soft tissue sarcoma and found that those who expected a difficult recovery, and those with uncertain expectations, had worse functional outcomes than patients expecting an easy recovery. There was no indication that their questionnaire had been validated. Chunta79 described studies that indicated that patients develop specific expectations about surgery and recovery, and experience negative feelings when their expectations are inconsistent with their expected recovery. They conducted a small convenience study of 54 largely male patients (average age of 63.46 years) from two hospital sites and reported that preoperative expectations, anxiety, depression and physical health were predictive of postoperative physical health status.

Focusing on the outcomes associated with total knee replacement, in a baseline and follow-up study of 74 surgical patients (about half female, average age 67.8 years), Engel et al. 201 reported that generalised expectations for surgery (visual analogue scales of probability of improvement and change in quality of life) and personal self-efficacy beliefs were significantly associated with postsurgical improvements in health. Campbell105 examined whether or not expectations about experience and treatment of pain determine how a person will view that pain experience. The authors sent questionnaires to adult patients with low back pain in two spinal clinics (211/234 responders at baseline, with response declining to 50% at follow-up). Their findings related utilisation of services to well-being, although their context was patient expectations.

Mitchell107 explored a range of expectations among a convenience sample of 26 patients in general practice and hospital with osteoarthritis of the knee. The study also pre-tested a knee pain questionnaire and reported that higher expectations were associated with higher activity levels. Another study240 reported that, in a survey of 186 patients undergoing pre-stem cell transplantation, those with higher expectations that the transplant procedure would go well had better baseline mental and emotional (but not physical) functioning than those with less optimistic expectations, and improved survival at 2 months; those with higher expectations were more likely to be married or cohabiting. Bell et al. 198 undertook a questionnaire survey of almost 1000 patients in family practice, internal medicine and cardiology clinics, although the response rate was very low at 32.2% and, like many expectations studies, the study was limited to the post visit. They reported that unmet expectations were more common among younger, unmarried patients and those who lacked trust in their doctors. Unmet expectations were associated with lower satisfaction. White et al. 194 undertook a cross-sectional survey of 200 dental patients and reported that patients without academic qualifications had the lowest expectations of services.

Goossens et al. 99 proposed three assumptions of response expectancy theory:

1. expectancies for non-volitional outcomes are sufficient to cause the expected outcome

2. response expectancy effects are not mediated by other psychological variables

3. effects of response expectancies are self-confirming.

They pointed to two expectancy dimensions, the choice of which can affect outcomes: predictive (what people expect the service experience will be, e.g. based on previous experience and awareness of market/what is provided) and normative (ideal referent – what people believe the service experience should be, e.g. based on needs). The authors’ mail survey about pharmacy services of almost 800 hospital patients (mean age 47 years) receiving prescriptions found that tangible aspects of a service, for example waiting times, were evaluated against expectations based on previous experiences, whereas less tangible, cognitive aspects were evaluated against ideal referents.

Morlock et al. 133 examined whether expectations were predictive of outcomes among 111 physical therapy patients (mostly female, average age 45.7 years) for low back pain. They reported that patients with the highest level of expectations reported the greatest level of improvement at discharge. Conversely, patients with the lowest level of expectations reported the lowest level of improvement. In contrast, Mannion et al. ,176 on the basis of a baseline and follow-up questionnaire survey of 100 patients who underwent lumbar decompression surgery (most were male, average age 65 years), reported no significant relationship between baseline expectations and follow-up pain scores. The systematic review of MEDLINE studies between 1966 and 1999, limited to psychiatric patients, by Noble et al. 181 reported many methodological weaknesses in the studies reviewed, including the lack of validated measures of expectations. They found few studies of processes of care and identified a complex relationship only between expectations of improvement and clinical outcomes.

Fulfilled expectations linked to patient satisfaction

Some authors followed the gap model of expectancy fulfilment. Expectancy fulfilment theory is the extent to which a person’s perceived occurrence of an event agrees with his or her previous expectations about that event. 109,251 Patient satisfaction is then defined as being achieved when a patient’s treatment expectations are met or exceeded. 143

Research is inconsistent, with some authors239 concluding that satisfaction is positively influenced by met expectations and positive disconfirmation (more positive experiences relative to expectations) and others finding that positive disconfirmation does not lead to increased satisfaction (Oliver316).

Associations have been reported between having fulfilled expectations (in particular explanation and understanding, followed by emotional support) and higher satisfaction. 140,143,233,236 Some studies, however, have reported that fulfilment of patients’ expectations accounts for no more than one-quarter of the variance in patients’ satisfaction. 152 Rao et al. 138 undertook a review of the expectancy literature based on MEDLINE 1966–99. They reported confusion in the literature between expectation fulfilment and satisfaction, and commented on the narrowness of all studies included (frequently based on single visits).

In theory, a person with negative expectations and positive outcomes would experience more satisfaction than someone with positive expectations and a positive outcome. However, a study of medication expectations among pharmacy customers239 reported that patients with positive, rather than negative, expectations obtained the highest ‘satisfaction with medication’ scores.

Christiaens et al. 112 investigated expectations and experiences in childbirth in a questionnaire study with a convenience sample of 611 women in the context of the value-expectancy model. They found that the more expectations are met, the more women are satisfied, affirming the value-expectancy model of expectations and satisfaction, discrepancy theory and the fulfilment theory.

Bostan et al. 212 adapted a hierarchy of customer expectations from market research and applied it to questionnaire responses measuring patients’ expectations of their rights (e.g. to receive information, choice): 6, ideal expectations; 5, required expectations; 4, high expectations; 3, minimum expectations; 2, low expectations; 1, possible lowest expectations. The distinction between categories is not necessarily clear, and the source of the questions is unstated and the sampling method unclear. However, they reported that patient satisfaction was found to be high because patients’ expectations of their rights were so low. Low expectations and their relationship with satisfaction were further examined by Mawajdeh et al. ,177 who found that patients with higher levels of expectation were less satisfied than patients with lower levels of expectation, and that this relationship remained significant after adjusting for sociodemographic variables.

Kucukarslan and Nadkarni,170 on the basis of a cross-sectional postal survey of 187 patients on warfarin discharged from hospital to home, found that disconfirmation of expectations was only indirectly associated with patient satisfaction, and research is inconsistent on expectancy disconfirmation theory as the model is cognitive and excludes social factors, such as social comparisons or affective factors (e.g. anxiety or depression). Dispositional beliefs, relatively stable optimistic/pessimistic beliefs about future outcomes, may influence expectancies. Dispositional optimism is a relatively stable personality characteristic and is the tendency to believe that one will have good rather than bad outcomes in life. Optimism has been shown to influence cancer patients’ quality of life and psychological distress to a higher degree than their recovery-related expectations. 150

However, Baron-Epel et al. ,154 on the basis of telephone interviews with a random sample of 92 adult patients (mostly female, average age 39.5 years), showed a weak association between satisfaction and the expectations–fulfilment gap (the higher the perceived fulfilment of the expectations then the higher the satisfaction, and the lower the perceived fulfilment of the expectations then the greater the gap and the lower the satisfaction). They concluded that this model is insufficient to explain variation in patient satisfaction. Fromentin and Laure Boy-Lefèvre,160 on the basis of a questionnaire to 167 prosthodontic clinic patients, also reported that level of expectation was a poor predictor of satisfaction. In a small (n = 16) qualitative study with a convenience sample of patients after completing curative cancer treatment, Winterling et al. 92 found that unfulfilled expectations for the recovery period were not related to lower levels of well-being.

Metcalfe and Klaber Moffett85 suggested that some evidence exists to suggest that health professionals should take patients’ expectations into account when making clinical decisions and planning treatment. 250 Redsell et al. 73 used semi-structured interviews with 28 patients (with 19 pre and post nurse or GP consultation pairs) to examine the nature of the relationship between patient expectations and satisfaction, based on evidence which suggests that there is a positive association between meeting expectations and satisfaction and between unmet expectations and dissatisfaction. Their finding that patients who did not understand nurses’ skills had higher satisfaction was speculated to be because they had lower expectations of them than of their GPs.

A few studies examined the issue relating to health professionals’ understanding of patients’ expectations132,138,190,202,207,238 and the degree to which patients have unrealistic expectations. 187 Montgomery et al. ’s questionnaire survey of expectations in women with breast cancer attending their first annual review clinic132 demonstrated that women’s expectations were not the same as their clinicians’ (aside from relapse detection). Clinicians placed the importance of detection of side effects of therapy and psychological concerns far higher than patients. Rao et al. ’s literature review of 23 studies138 found that patients frequently expected information rather than specific physician actions, but physicians did not accurately perceive patents’ visit-specific expectations. In comparing the views of chiropractors and their patients, Sigrell190 found that patients had lower expectations of their treatment than the chiropractors but higher expectations of being given advice and exercises. Patients also expected to improve at a faster rate than the chiropractors expected them to. Physicians were shown to have poor perceptions for predicting parents’ expectations for antibiotics. 202,207 Expectations of returning to work as determined by patients with acute-onset low back pain and their clinicians were shown to be weakly correlated. 238 In terms of unrealistic expectations, in their study of prefitting counselling among 60 new users of hearing aids, Saunders et al. 187 emphasised the need to address unrealistic expectations cautiously, otherwise expectations could be decreased to the extent of discouraging and demotivating the patient.

Expectations and health service use

A small semi-structured telephone interview study by Egbunike et al. 221 of out-of-hours GP users in six centres, reported some mismatches between service expectations and service delivery among patients without previous experience of the illness, mothers of children under 5 years of age, those who lived alone and those requiring specialised care. They reported that unmet expectations resulted in subsequent, and some multiple, consultations.

Telephone compared with face-to-face interviews

Piloting of the telephone interviews and subsequent experiences highlighted some subtle differences from the face-to-face process. Although the amount and quality of the data elicited were not significantly affected, as the average number of expectations for both face-to-face and telephone interviews was just over seven per patient, it was slightly more difficult to explain the ‘best’ and ‘worst’ scenarios over the telephone, mainly because the patients could not see the expectations chart that was being filled in. Aside from this one issue – which we felt was adequately addressed through careful description of the process – we were not aware of any great difference between the nature of the discussions that took place or the quality of data we acquired.

Length of interviews

The average length of a GP patient pre-consultation interview was 35.51 minutes and the average length of a post-consultation interview was 7.40 minutes. In contrast, the average length of a cardiology patient pre-consultation interview was 32.12 minutes and the average length of the post-consultation interview was 9.16 minutes. Within the latter interviews, those conducted face-to-face took an average of 33.35 minutes for the pre-consultation interview and 7.08 minutes for the post-consultation interview and those conducted by telephone took an average of 31.36 minutes for the pre-consultation interview and 10.10 minutes for the post-consultation interview.

Analysis

In total, 20 pre and post interviews with GP patients and 20 pre and post interviews from the hospital cardiology department were transcribed verbatim, as a word-for-word reproduction of the audio-recorded interview. 7 For this study, the interviews were carried out by one researcher and transcribed, coded and qualitatively analysed by a second researcher. Although the interviews have been described as being transcribed verbatim, as Poland279 notes, transcription is an interpretative activity and how the transcriber hears and perceives the content can affect the accuracy of the transcription. It should also be noted that many of the research participants had distinctive regional accents and the direct transcription of some words as they sounded would have altered the meaning of what was said, for example ‘been’ tends to be pronounced as ‘bin’ but was transcribed as ‘been’.

On the transcripts brief pauses were indicated by ‘. . .’ and more pronounced pauses were noted as [pause]. These were not timed, rather they were subjectively defined by the transcriber. Words that were unclear were noted on the transcript alongside the time code, for example [unclear word: 04:45]. For the most part, unclear words such as ‘er’ ‘erm’ and ‘mm’ were not transcribed as the transcripts were to be used for thematic and not linguistic analysis. This also produced a more coherent and fluid transcript, although it is acknowledged that the absence of such words may affect another’s reading of the transcripts. Other audible sounds such as sighing or laughter were included in the transcript as [sigh] or [laugh], which can assist in providing a context for the spoken word.

On occasions when the interviewer’s and patient’s speech overlapped, this was transcribed as far as possible, distinguishing who was speaking. Names and specific places were anonymised during transcription, for example Dr [name]. When more than one doctor was talked about, this was noted on the transcript. If individual doctors had been relevant to the study, a coding system such as Dr A, Dr B, etc. would have been used by the project team.

Each transcript was read through by the transcriber at the same time as listening to the interview to fill in any missed or unclear words and to ensure that the speech attributed to the interviewer (marked in italics in the quotes used in this report) and interviewee was correct. Although the need to produce verbatim transcripts has been discussed by some researchers,280 the production of verbatim transcripts enables all members of a research team to have access to the data.

For analysis of the transcripts, the decision was taken to treat the GP and cardiology transcripts as two data sets to reflect the different locations and aspects of health care that the patients received. In the analysis process it was also thought that this would aid the identification of codes and later the development of themes pertinent to each location as well as the identification of more nuanced similarities or differences.

A thematic approach was taken to the analysis of the transcripts. 281 The transcription of the interviews formed part of the data analysis process282 and notes made during transcription were referred to at the initial coding stage. The transcripts were read through to aid familiarisation with the data and the files were imported into NVivo8 (qualitative data analysis software; QSR International, VIC, Austalia). Coding was open and inductive using Nvivo8’s ‘free nodes’ (the basic level of coding), hence the codes did not fit into a pre-existing coding framework;281 instead, verbatim quotes from the patients or researcher-generated codes were used. Coding was contextual with the surrounding text forming part of what was coded, and at times a section of text was multi-coded to reflect different aspects of the data.

Once all the transcripts had been coded in NVivo8, these were checked through, and where codes overlapped, for example where slightly different phrasing had been used, these were merged. In total, the GP patient data set produced approximately 1100 ‘free nodes’ and the hospital patient data set produced approximately 950 ‘free nodes’.

After each data set had been coded, themes were developed as part of a recursive process taking an inductive or bottom-up approach. In order to manage the data after the coding, the most obvious free nodes were collated under broad tree nodes [the terminology used by NVivo8 to denote the development of (hierarchical) themes], for example around a particular theme such as ‘space’ and more specifically ‘the waiting room’. This semantic approach drew on the explicit meanings of the data and produced a range of initial themes that were checked to see if they worked in relation to the coded transcript extracts. From this subthemes were developed through a continual process of searching for themes and then reviewing and refining the themes. Connections or linkages between the themes were developed to group themes under an umbrella theme until the point at which five such umbrella themes (the dominant ones) were formed from the cardiology data: doctors and patients, tests, treatment and medication, outcomes, spaces and time. A sixth theme labelled minor themes ensured that minor aspects arising from the data were not discarded. From the GP data, six umbrella themes were developed, namely doctors and how patients feel, the consultation, examination through to outcomes, personalised experiences, spaces and time. As with the cardiology data, a further seventh minor themes category was developed.

The analytical process was thus complex. Coding themes were informally discussed within the research team, although because the process relied on specialised use of particular software known to the coder no formal inter-rater reliability checks were made (and member checking was deemed infeasible for a number of pragmatic reasons). This limit to data trustworthiness should thus be acknowledged, although the research team felt that the data were generally straightforward to interpret and the themes had a great deal of face validity.

Analysis of the expectation charts

As with the transcripts, separate analysis was undertaken for the GP and the cardiology patients’ expectation charts to enable each location to be considered as well as allowing for the identification of similarities and differences. As described in the methods section, during the course of the interview, the interviewer filled in a chart recording the patient’s responses and ratings. The patient was asked their reasons for their ratings (their rationale), but these were not noted on the chart. The charts were used to help systematically record the responses from patients – for their benefit and ours. Subsequently, so that the rationales could be analysed and for these to remain within context, two further columns were added to the chart: in one the rationales were added by referring back to the transcript and in the other the rationales were coded and themes developed by grouping similar codes together. An example of this can be seen in Table 4.

Theme 1: the doctor

The positive aspects of the doctor’s manner or character were for the doctor to be a professional who was an expert, had authority and was competent and confident. Alongside this, the doctor was also expected to be interested in the patient – established through the doctor engaging with the patient and exuding a positive manner (demonstrated by being helpful, courteous and polite). Patients also expected the doctor to be caring and sensitive about their particular health issue or reason for seeing them, and in doing so to appear empathetic and sympathetic to the patient:

Yeah, so I expect, I would hope that they again, it’s down to the thing of competence and sensitivity on their behalf isn’t it really in a way that they can, they make you feel relaxed rather than tense about the situation.

(Male, 58)

OK, right so the third expectation you have of this meeting is that you expect the GP to be sympathetic right . . . so what would be the best one?

Sympathetic.

So how would it manifest that sympathy?

Well, listen to what I say and sort of act as if he understands how I feel.

Right, so listens to what you say and acts as though he understands, so that you’re feeling heard

And listens yeah.

OK, so GP listens and understands to what I say OK. Any other things you can think of for the best case how would it manifest if it was an ideal situation for GP being sympathetic to you? So is there listening and understanding?

There’s listening and understanding, talking to me about problems.

(Male, 58)

But what manner in which would he talk to you?

Oh, very, very calm, very reasonable erm reassuring erm I’ve gotta say caring sort of like, like a caring sort of way as well.

(Male, 31)

In contrast, the negative aspects of the doctor’s manner or character that patients hoped not to face were for the doctor to be uncaring, indifferent and dismissive, and appearing unsure about what they were doing:

If they [doctors] didn’t care, that would be the worst.

(Female, 81)

If they [doctors] seemed disinterested in your situation or what you’re actually there for, that would be the worst.

(Male, 22)

I just wanted her to say [the doctor], yeah that’s fine, that fine, but she was a bit indecisive [and] that made me think, well have I got a problem or am I right, yeah I know I am, ’Cos she said to me, anyway, but just the way she seemed unsure it started to make me feel unsure.

(Female, 47)

A doctor’s poor communication skills was another issue that patients mentioned, for example a doctor who might be blunt in the way that they spoke or broke news to patients:

The worst would be where it’s either rushed through, them being blunt and you know almost to the point where it’s like sit down, what’s up, let me have a look at it, great, that’s your problem, clear off.

(Male, 36)

An area of concern arose with a number of patients suggesting that the actual doctor they saw may affect how they felt and the consultation process, for example patients cited certain doctors making them feel uneasy, defensive or inhibited, and consequently patients admitted feeling unable to tell the doctor what they needed to know. This appeared to be more significant for patients who would not or did not see their preferred doctor:

For me, from my point of view, the nightmare, I guess a nightmare would be . . . if they made me feel, if they made me feel defensive about my health you know if they made me feel if they made me feel that I would rather not open up and be honest about things, but just you know sweep stuff under the carpet, just to get out of it [laughs].

(Male, 58)

I was seeing a different doctor, so, no I just thought I’d keep everything quiet and wait until I see my doctor next then that’s what I’ve done, so pretty much all the stuff I come in to talk about, I haven’t.

(Male, 31)

I have been known to come, make an appointment and try to get my doctor, and I haven’t been able to get him and I’ve actually not bothered coming to the surgery and

Right

made another appointment, solely waiting for my doctor to come back again.

(Male, 31)

If patients feel too inhibited to explain their symptoms or reasons for seeing the doctor, this can be viewed as having potentially dangerous ramifications for a diagnosis, treatment and health outcomes.

Although the ways in which doctors were talked about have been broadly described as positive or negative, other minor themes about doctors also arose. These related to the doctors’ sex: most often doctors were referred to as being male, unless the patient knew that they would be seeing or had seen a female doctor. A few of the patients regarded doctors as being people with their own lives and problems or referred to the doctor they had seen or might see as ‘being foreign’, ‘from overseas’ or not having English as their first language, which could affect doctor–patient communication and understanding between the two parties:

I know people have experiences, not in this area, with doctors who haven’t got English as their first language. I haven’t had that experience, but I think that would be a real no no because I think you need to be really clear.

Yeah

About, you need to have, to have a feeling and an understanding that the doctor is clear about what you’re saying to them and need to understand what they’re saying to you.

(Female, 46)

I couldn’t understand her ’cos she was foreign.

(Female, 29)

For some patients, seeing the doctor was regarded as a last resort because they rarely needed to see a doctor and did so because they were unable to treat their own condition:

Yeah, yeah. I mean it’s obviously, I mean the rarity of seeing, that I made a point of wanting to see him then I’d hope that he would make me welcome knowing that there was something wrong to bring me there you know and he’d be understanding about that and there’d be a concerned welcome if you, if you get my drift on that.

(Male, 49)

I will only go and see the doctor when I’m really ill, I mean if I usually get a flu for example, I won’t actually see the doctor, I’ll just get myself a Lemsip or Strepsils.

(Male, 32)

As well as talking about what patients expected the doctor to be like, patients also discussed their expectations about how they expected to feel when they went to see a doctor. Before seeing the doctor, the way that patients felt was a significant factor, for example they spoke of feeling embarrassed, feeling pessimistic or having a sense of feeling better because a health issue could be treated:

I’d should feel embarrassed I think, I mean I shouldn’t be at my age, but

Being physically examined and . . .

I must be a prude.

(Female, 72)

Right, so which one are you expecting it’s going to be as it is or are you expecting to get an NHS prescription?

[Laughs] I’m going to be pessimistic to be honest.

(Male, 49)

There’s something wrong with me, but I know that it’s going to be fixed.

(Female, 47)

One recurring theme concerned expectations of feeling anxious or experiencing anxiety, nervousness, worry and fear. Although one patient viewed anxiety as natural and expected under the circumstances, for another patient it was something they always felt around medical settings. Patients tended to describe experiencing anxiety while they were waiting to see the doctor or for a specific reason, for example they were expecting to receive test results in their consultation. Alongside the feelings of anxiety, three of the patients spoke about experiencing physical signs of anxiety prior to their consultation, for example having sweaty palms, feeling hot, sweaty and jittery and having butterflies in their stomach:

OK and what are you, how are you expecting to feel throughout that entire process

Well, I think I’ll feel nervous for about, because it’s just yourself, you also assume things are bigger than they are.

Yeah.

By the time you get in there you’re sort of like hot, sweaty you think and then the pain’s gone and you think, oh God, I’m coming here for nothing, I’m wasting his, this person’s time.

Yeah.

And by the time you get in there, there’s no pain at all, even though, you just think, you know, oh God, I’m wasting it and then I just I feel like, I say, you know, tell me I’m OK, but yeah, this anxiety you get, really nervous, it’s like going for an interview, not seeing a doctor.

(Female, 46)

Anxiety appeared to decrease if the patient had something to do or someone to talk to while waiting or when the patient was actually in the consultation with the doctor:

When I’ve got something to do or someone with me talking to me I’m fine, it’s when I’m actually on my own.

Right.

My mind just starts wandering and you just start thinking things.

Right.

So, other than that if I’m busy I’m fine.

(Female, 38)

Although not mentioned in this context, patients expected to have activities to occupy them while waiting, for example reading materials.

With regard to feeling nervous, the extent of this appeared to be affected by the situations in which patients found themselves, for example one patient suggested that they were less nervous if they saw a doctor of the same sex, and another suggested that they were more nervous at the hospital. Several of the patients described feeling worried about seeing the doctor, and two felt that it was the responsibility of the doctor not to worry the patients until all the facts of the patient’s condition were known:

the worst scenario would be that they presented me with un, that they presented me with an unnecessary over the top scenario, you know where they would tell you, where they actually make you feel paranoid about your health, where they you know blow it out of proportion, that would be the worst thing where I come out spooked [laughs] unnecessarily and that does, it has happened in the past.

(Male, 58)

I’m trying to get from him something he can’t give me, but he’s got to be really sensitive, he’s got to actually reply, he’s got to be economical with the truth in that cert, certain ways.

(Male, 60)

Feelings of anxiety, nervousness and worry might be in part explained through patients also reporting feelings of uncertainty or not knowing what to expect in the contexts of either the actual consultation or what the doctor would do to treat a condition. From the analysis, although more patients reported expecting to feel anxious, nervous, worried and uncertain, a number of the patients spoke of feeling calm and relaxed and did not, at least for the specific consultation that was the focus of the interview, experience feelings associated with anxiety:

Yeah, I know that ’cos every time I go in there, you know, I’m always calm, you know and I feel calm and feel relaxed so I feel I can talk about anything so that’s, solely on that reason that’s why it’s a ten ’cos every time I go in there it’s, you, always for me you know it’s always a calming environment and everything for me and my doctor so that’s, that’s why.

(Male, 31)

How a patient felt was also affected by feeling (un)confident and (un)comfortable. The extent to which a patient felt confident was talked about in three ways: first, that the patient had confidence in the doctor; second, that the patient was confident in their self, for example being assertive in getting their point across to the doctor; and, third, that the patient lacked confidence, for example in telling the doctor their symptoms or seeing a doctor they did not know:

The best would be one where, the best where, where . . . the GP has a manner that makes to feel that, that makes you feel relaxed and confident in, relaxed in yourself and confident in their abilities to give you a, to give you a decent examination and come up with the right, I guess the word is prognosis isn’t it?

(Male, 58)

Doctors are usually quite confident and you’re looking for confidence. If you’re looking for confidence in someone and you find it.

(Male, 32)

Well I think I I’m confident enough to explain my symptoms to him.

Right.

And as I say then it’s entirely up to him.

Right, so for that expectation, for the best to happen you’d be confident to be able to

Yes, I think I am confident.

OK. And what’s the sort of rationale behind giving it an eight instead of a five or a ten?

Well, I think I could be forceful enough to

Yeah

Yeah, I can be pretty bolshie.

(Male, 49)

Feeling comfortable was briefly mentioned in the context of physical comfort, but tended to be referred to within an emotional context of feeling comfortable with the doctor, as the quote below exemplifies:

So how are you expecting to feel during your consultation with the doctor?

I’d expect to feel relaxed, you know, to feel safe in my environment and to feel that the person who I’m having my consultation with understands who I am as an individual.

Right.

And ultimately to, you know, I’ll feel comfortable with them, do whatever it is that they need to do to help me feel better basically.

(Male, 22)

I suppose I would like to see my normal doctor ’cos I feel comfortable with him and he knows me.

(Female, 67)

Patients expected doctors to make them feel relaxed and comfortable, so that they would find it easy to talk to them about anything – and this was aided by having a familiarity with the doctor. The doctor, according to a number of patients, also had the potential to make them feel physically or emotionally uncomfortable, through their attitude, by not introducing themselves or by being a different doctor from the one who the patient usually saw:

Exactly, but again you know I mean obviously I was uncomfortable, obviously though because it was a different doctor.

The GP’s presence is part of the physical environment?

Exactly, but then at the same, at the same point it was a different doctor and she was, she wasn’t rude or anything like that erm she did ask like about the medication that I was on at the moment, she did ask which one, she weren’t rude or anything like that and as I said it was more of the shock

Yes

of not having my usual doctor erm so I think, I think I’ll put a five down for that [referring to the rating for the expectation chart].

(Male, 31)

That’s the main thing the worst would be for me to be very uncomfortable both physically or at all emotionally through their [the doctor’s] actions.

(Male, 36)

Yeah. I don’t, I’ve never seen the doctor before, she didn’t introduce herself, she just sat there and waited for me to speak.

Right.

And I’d find that a bit uncomfortable.

(Female, 47)

This section has discussed the expectations that patients have regarding the manner of their doctor and how patients expect to and indeed do feel before and while seeing their GP. The next section considers a specific aspect of the doctor–patient experience – the extent to which the consultation is a ‘personalised’ experience.

Theme 2: personalised experience

Patients placed a significant emphasis on what can be described as having a personalised experience when they see their doctor. This can affect how the patient feels in, and about, the consultation. To begin with, patients felt that it was important that they were greeted or welcomed by their doctor through an action such as a smile or handshake. When a patient sees a doctor for the first time it is important that the doctor introduces themselves, as patients said that they felt more comfortable knowing the name of the doctor:

The best thing, a good handshake, calls me by my name and he’s sort of smiling. I don’t think I’d say happy to see me ’cos GPs probably prefer not to see anyone because then everybody was well, but you know, pleased to see me and you know just says hello, how are you, that kind of thing.

(Male, 36)

Ah, just like it is now I suppose, you sort of, one you can’t always see the same GP, so sometimes you see a stranger and when they come and greet you, that’s quite calming because you’re going in there ’cos you think or you have got something wrong, so when you’re greeted and he say I’m Dr Joe Bloggs.

(Female, 47)

Because they [doctors] are warm and friendly when they come out [of their office], smile.

Yeah.

They greet you, they usher you through to their room, they don’t just, Mrs [name] and stomp off and expect you to catch them up or anything.

(Female, 46)

It was noted by the patients when doctors did not greet them, with one worst-case scenario being that they were treated as an ‘inconvenience’:

[doctor says patient’s name], yes, and she just marched off.

Right.

So I was really disappointed and, and quite shocked.

Right

So, yeah.

So what are you going to give that then?

I don’t want to give it a zero because she didn’t look particularly irritated or cross or dismissive, it was just like [name of patient] and she was off.

(Female, 46)

Nightmare consultation is basically a doctor that erm, they don’t do it here fortunately here, but one of those doctors where they have a beeper where it just lights up outside and a red light comes on and you know that you need to go through, you open the door and they just sit and look at your notes without real lack, well without welcoming you so they’re sitting at a desk, they may look over to the door, sit down and just sit by their computer really, so they don’t treat you really like a person and they treat you more like an inconvenience.

(Male, 36)

Several of the patients expected to see or would ask to see a specific doctor. Patients tended to prefer to see the same doctor, one that they knew, each time they visited the surgery, and one patient suggested that this provided continuity of care for a specific health issue. When a patient’s preferred doctor was not available, some patients would wait until they could make an appointment with their preferred doctor. However, this is not to suggest that all the GP patients wanted to see specific doctors, as several were happy to see whichever doctor was available, and patients mentioned that they often did not know which doctor they would see:

I do prefer to see the same doctor, all through it’s better I think than [to] keep seeing different doctors in the surgery and having to go through a history and that.

(Female, 38)

I always try, if I can, to see the same doctor.

(Female, 81)

I’ve been with my doctor for so long you know it’s sort of like more, more of a bond there and I feel a lot more comfortable, a lot more at ease to be able to talk to my doctor myself.

(Male, 31)

I haven’t built up a doctor–patient relationship with any individual here.

Right.

Which is something that I think possibly concerns me a bit about the practice that in four years I still, there isn’t anybody here who I can identify as being my doctor.

(Male, 58)

The personalised experience was enhanced when the patient knew the doctor and when they felt that the doctor knew them. It was in this context that the patients spoke of having a ‘personal experience’ with the doctor; the sense of knowing and being known by the doctor was highly valued, with lack of mutual recognition serving to detract from the experience for some patients:

But when you’ve been with a GP long enough and when he’s seen your notes, obviously he may recognise that certain people are going to have certain chronic problems or certain repetitive things that they tend to come in for . . .

Yeah.

. . . I haven’t been with this GP long enough or visited them often enough for them to have sort of accomplished that yet really so they’re probably not going to have any idea what I’m coming in for.

(Male, 36)

Just a generally warm welcome, just a sort of manner that’s going to put me at ease and just, I would expect that he’d actually seem interested in my problem sort of a more personal experience really that’s the sort of thing I’m hoping for, a more personal experience rather than a conveyor belt.

(Male, 36)

Alongside knowing the doctor and/or being known by the doctor, the personalised experience was enhanced by the doctor making eye contact and displaying positive body language as well as there being a good rapport between the doctor and patient. This was characterised by a chat or ‘friendly banter’:

Sometimes we, you know we seem to have a bit of friendly banter and like between the two of us as well which is sort of, perks me up even more once I’ve been in, we don’t like always have a bit of banter, you know, but sometimes you know he’ll say something funny or I’ll say something funny sort of thing.

So someone you can have a laugh and a joke with?

Yeah, yeah exactly and then again that’s why, that’s why I’ve said about seeing my doctor, and ’cos sometimes I’ll walk out and sometimes I’ll walk out of here a damn sight better than when I’ve come in and it sets me up for the days, it’s weird but you know, that’s how it is you know.

(Male, 31)

I shall ask him how his little dog is because [laughs] I’ve got a dog and they met up with sometime, so I ask him about his dog but that’s . . .

So you have some friendly chit-chat?

Oh absolutely, yes.

(Male, 83)

I first met him [the doctor], he introduced his self, and I was pregnant at the time and that was my first child, and I was like, you know, and then through the years and I used to go and I used to speak to him like I spoke to my dad, and that was good, because I could tell him anything.

(Female, 47)

Another aspect of the consultation that can affect patients is how they feel that they are treated by the doctor. Several patients suggested that not being taken seriously by the doctor would be an issue, with one patient saying that they might feel that their integrity was being questioned. Patients also spoke of not being treated as a person, being ignored or being treated as a number or as an inconvenience by the doctor:

She don’t even look at me [laughs] because normally I go help my name’s and then that’s it, they just stare at their computer and then they go right you’ve had these tablets, you’ve had these, you had these, I’ll try these and they don’t even give me eye contact and they never ask me what’s the matter.

(Female, 29)

In contrast, patients identify being treated positively as being given the full attention of the doctor, the doctor regarding the patient as an individual and intelligent, and being treated with respect:

Yeah I suppose caring, you know a genuine sort of level of caring towards you as an individual there, they want to help you, to me that would make me feel relaxed and safe in knowing that they want to help me.

(Male, 22)

Feeling that he’s not wanting to push you out of the door to get to the next person in, that you’re actually this is your time and your space with him and he’s giving you one hundred percent of that, so there’s no pressure on, so you’re not feeling he’s just wanting to get you done and dusted.

(Male, 60)

Well say a comparison, you go in a shop and some shop assistants are very pleasant and some of them are grumpy and rude and not really polite and that’s not right, you shouldn’t treat the public like that, GPs don’t, they treat them [clears throat] as a patient and with courtesy.

(Male, 72)

The first two sections have highlighted what could be described as the emotional aspects of going to see the doctor and the importance of the doctor’s manner as well as the extent to which doctors know or can appear to know (about) the patient. Alongside this are the emotions of the patient, whether they feel anxious or relaxed, and the significance for some of knowing and being known by the doctor they see and the reality or the perception that the doctor knows about them as an individual. The following section moves onto the practical aspects of the consultation, but the emotional aspects discussed above still play a significant role in the expectations and experience of the consultation.

Theme 3: the consultation

Before talking about the consultation, the appointment-making process was mentioned by a number of the patients, and, although this is outside the scope of the project, it is worth mentioning to highlight the difficulties that some patients reported having in either making an appointment to see a doctor of their own volition or making a (follow-up) appointment because they had been told to do so by the doctor or practice:

’Cos like if you’re making a first appointment it’s a bit of a chore and it’s a bit difficult to try and fit it in with your work, you getting an appointment that’s convenient, but if the doctor said to you I need to see you in a week’s time I would expect to go out of his room to the receptionist and make that appointment, I wouldn’t expect to have to ring up in a week’s time and try and fit it in again with my work.

(Female, 46)

The doctor said they wanted to see me in a week, not two weeks, that really annoys me, like I come in when I’m ill and I can’t get seen until the week I’m better [laughs] when I’ve got my appointment and I just cancel it to say I’m better now and I’ve fixed myself.

So you expect a follow-up fairly promptly.

Yeah if I need one, I expect one to be able to say, it don’t matter what time of day it is, you know, just don’t want to wait a week.

(Female, 29)

That can be a problem if you’ve got a follow-up appointment from your GP when I go away he says I want you to come and see me in four weeks time, I then go see the receptionist and I expect from the receptionist co-operation to actually book me an appointment, an early morning appointment to come in to see the GP rather than be told I’ve got to keep phoning in.

(Male, 60)

Patients referred to several aspects of the consultation: the reasons why they are seeing a doctor, the style of the consultation, the length of the consultation, doctor–patient communication within the consultation and what the doctor would be like in the consultation, including what the patients viewed as positive and negative things a doctor did in the consultation.

During their participation in the research, patients were not asked specifically why they were seeing a doctor; however, in the course of the interviews, it became clear that several of the patients had ongoing or recurring health issues and therefore were aware of the issues surrounding a particular health concern, or used their single appointment to raise multiple health issues with the doctor. Patients also felt that the doctor would ask about their previous health issues, and a few felt that they already knew what was wrong with them, and perhaps knew more than the doctor:

Well if I did it perfectly I’d probably be in there about half hour or more but you know in depth he’d ask me about the different aspects of my various problems one by one, and deal with each one, one by one.

(Male, 58)

Yeah duration I mean I generally don’t take very long because I’ve generally got an idea and an expectation of what the diagnosis could be and what potential follow-up to that is, so I can usually go in fairly quickly and state symptoms and the history and things like that, let them know what I think something might be and then it’s really just a quick chat and a general examination so I generally don’t take very long.

(Male, 36)

Because I’ve had this problem so many times, I know the doctor like the back of my hand; I know exactly what he’s going to tell me and what he’s going to do.

(Male, 45)

The expectations and experiences of consultation style or the ambience varied between patients, such as being described as ‘a bit informal’ or of ‘a high standard’:

And she commented on how you feeling, she had a little bit of a joke as well you know that’s what I want, I don’t want to go in there and act all serious all the time, you know so it was a nice not to have that formal thing about it, it was a bit informal and I like that, that’s good.

(Male, 22)

A few of the interviewees suggested that the doctor was responsible for creating the ambience or atmosphere of the consultation. For example, one interviewee expected a warm environment created by the doctor, but the post-consultation interview revealed that this patient’s expectations had not been met:

The physical side, I’m don’t, I’m not quite sure what they’re gonna to be, the environment is going to be created by him [the doctor].

(Male, 49, pre-consultation interview)

Yeah, so cosy, warm environment you was expecting a nine.

I was warm.

Yeah.

But again, I think his [the doctor’s] personality, you know, I’ll knock it down to a seven again.

Right. Yeah.

But that’s personal demeanour, that’s him [the doctor].

(Male, 49 post-consultation interview)

Because they make you feel welcome here and, you know, not so you come, so you want to come everyday, but you’re made to feel, you are tried to make [made] to feel at ease.

(Female, 59)

The expected length of the consultation varied: one patient described it as needing to last for ‘as long as it takes’, whereas others preferred a straight in-out approach. When time was referred to, patients tended to want or expect the consultation to last between 10 and 15 minutes:

Well bearing in mind that the injection I have to unclothe, I have to put my trousers down, vest up, he then gives me the first injection and I then wait a couple of minutes for it to take affect.

Yeah.

And then while I’m redressing again, he is on his computer and I don’t expect to be in there more than fifteen minutes.

(Male, 83)

A key aspect of the consultation was the communication between the patient and the doctor. This should be viewed in conjunction with the sections on how a patient feels and the personalised experience of the consultation. Patients expected that the doctor would talk to them and begin by asking why they were there (although for some patients this was a question they wanted to ask, as they had been requested to make appointments):

Well he’ll ask me how I’ve been and I’ll tell him and take it from there you know.

(Male, 58)

He’ll, I imagine he’ll greet me like he normally do, how are you, and then ask what the problem is and then if they’re not sure ask again and then obviously look at the problem.

(Female, 47)

You go in and they ask you to sit down don’t they?

Yeah.

[Pause] sometimes they ask you why why you’re there, but they already know why I’m going to be there this time as they actually sent for me.

(Female, 59)

In return the patient would explain to the doctor why they were there, outline their symptoms and perhaps expect to provide a context or timescale:

Tell them the symptoms I’ve got.

So, OK.

Explain how long it’s been going on for and hopefully we can get to the bottom of what the problem is.

(Female, 38)

Yeah, basically I’m going to tell him a brief history of what’s happened up to this point and the thing I’m particularly worried about, get him to have a quick look and hopefully, he’ll either to sort of allay my fears or what it potentially could be or just guide me to the right person to sort it out if it does need sorting out.

(Male, 36)

I need to explain my symptoms quick, in the shortest way possible and as accurate as possible.

(Male, 60)

At some point during the early stages of the consultation it was expected that the doctor would look at and, if appropriate, refer to the patient’s medical records to inform them about the patient’s medical history. Patients felt that looking at their medical history would provide the doctor with some contextual information that may or may not be useful in the diagnosis or ongoing treatment of their health issue, while also providing them with the opportunity to check up on the outcome of a previous health issue (which was appreciated by the patients):

The doctor didn’t know me personally and so didn’t know because I’ve had no previous dealings with her she couldn’t refer back to her own experience, but she obviously got my notes and had looked at them on the PC, I could see her referring to them whilst we were doing it and adding to them, but again she picked up on something, on an issue I’d had in September, right.

Right.

And asked me how I was going and how I was feeling with that and how that was affecting me still, you know, was it still cropping up and things like that, so not only had she access to the notes, but she referred back, which I thought was excellent.

(Male, 36)

When I go into the room I want them to know who I am, because on records they’ve got what, what you’ve had done previously, you know, where you live and everything and, you know, when I go into a room I want to know that the doctor I’m seeing knows what they need to know about me.

So they’re aware of your history.

They’re aware of my history, yeah I want them to know what they should know about me, you know not anything else but you know so that by them knowing, well for me to think that I know that they know.

They’ve read your notes, they’ve read your notes.

They’ve read my notes, that makes me, going back to the old point that makes me feel comfortable in my surroundings and I know that I can feel comfortable which is why I’ve never left this practice really.

(Male, 22)

Having received this information from the patient and referred to the patient’s medical records, it was expected and hoped by the patient that the doctor would understand their situation and carry out appropriate actions that would lead to a diagnosis (this aspect of the consultation is discussed in greater depth in the following section on examination through to outcomes). Alongside this it was expected that the doctor would talk to the patient and provide an explanation of what they were going to do:

She [the doctor] explained, she explained things well.

Right.

She done it so I could understand, because I don’t understand medical terms.

(Female, 59)

Yeah she gave me advice on the first issue that I had [which] was very good. Second issue very quickly identified the problem and I sort of explained that I’d looked into it and had kind of gone through most of the things I thought it maybe without a need to be referred on and she agreed straight away, told me exactly who I’d probably need to see, not necessarily the doctor, but the department I’d be needing to go to, what the result probably would be and the treatment that I’d probably end up receiving and explained that very well.

(Male, 36)

And if he offered me treatment, drugs whatever, and I was unsure about it, I would want to, I would, if I asked him what alternatives are there, I would expect him to say, to be honest with me and say, well there are alternatives, but they aren’t as good, these are the reasons why or I would want him to say, no I’m sorry there are not alternatives, I would want him to be straightforward with me in that respect as well about treatment.

Right.

Just a thorough explanation.

And being honest and open.

And listening to my questions and answering them honestly and accurately and not fudging the issue.

(Female, 46)

Two issues emerged from the data relating to doctor–patient communication during the consultation. First, patients expected doctors to take care over what they told patients, with one patient suggesting that sometimes doctors needed to be economical with the truth:

So he’s economical with the truth, he may have some suspicion that something serious is quite seriously wrong, yet he’s not going to actually express that suspicion until he knows from the test results exactly what is going on.

(Male, 22)

Second, and perhaps an area of greater concern, surrounds the active unwillingness of some patients to tell the doctor about aspects of their health that might be relevant to a diagnosis or treatment. Patients suggested that being in a position where they could not talk openly to their doctor would be a worst-case scenario, and for two of the patients this reflected reality – and they chose to withhold information about their symptoms. These actions would be influenced by seeing a doctor they did not know or feeling too inhibited to speak openly to the doctor (noted earlier in discussing the negative aspects of a doctor’s manner), but could also be influenced by patients’ past experiences:

I can tell the doctor what I come to tell him, but I don’t always do it.

Based on past experience, something you’ve had problems with and

Yeah.

And you get home and think oh I wish I’d said

And I’ve learnt to keep things quiet and secret.

Right.

I’ve learnt to through bad experiences I’ve learned to do that, I’ve learned that you don’t tell everybody everything . . .

Yes.

. . . and I’ve learned that you don’t trust everybody and I’m very wary and very cagey sometimes people around me and you keep it here and you think only I know that and no one else know that and that is how I do it.

(Female, 59)

Yeah . . . yeah I did get that, you know again as I said earlier she weren’t she weren’t rude or anything like that, she was there to do her job, so but it was just my choice not to, it was my choice not to tell her the things that I wanted to discuss.

(Male, 31)

The worst would be, if you go in and obviously sit down or take and seat and you sit down and there’s, they’ll look through your records and there’s a silence, they ain’t saying nothing and you’re worried about what you’re going to say, by the time they actually spoke to you, you’ve forgot what you went in for because you think there’s something wrong because they haven’t spoken to you, and then if you feel there’s something there and if you feel you’re not being taken seriously.

(Female, 47)

During the course of the consultation patients expected that the doctor would listen to what they had to say, but one fear was that the doctor would not listen to them. For example:

I’d feel relaxed [if the doctor listened] and I’d feel like the doctor was treating er my indigestion, I’ve got another word for it, it’s gastro something but and I’d expect him to sort of think that is serious matter instead of just thinking, she’s got indigestion again, you know. I always thought indigestion, you know poor old soul, you’re alright but that’s worse than that, so I expect her to say you know I’ll listen to you, I’ll help you, you know and make you feel relaxed and comfortable and make me feel like I’ve been listened to and understood.

(Female, 29)

Aside from listening, patients identified other positive actions from the doctor including the doctor being interested in the patient and demonstrating understanding as well as providing the patient with information – whether this was a detailed explanation, guidance or explaining something in lay terms:

Rather than just go in and find out what’s wrong and away you go you know they do try to explain and talk to you you know it’s although may not understand all the medical things, but then you tell the doctor that you don’t understand what he’s saying and then they break it down into layman’s terms so you do, you know.

(Female, 59)

In contrast, the negative actions that a doctor could display were, for example, appearing disinterested, appearing unprofessional, not asking or answering questions and failing to explain to the patient about their health and possible future situations:

Yeah, ’cos they don’t even ask me about it no more, they don’t ask me about it, they just say got indigestion again have you? Yeah. They don’t ask me what or nothing.

So what would be the worst?

I’m in and out in two minutes.

And just like a conveyer belt really.

Just chuck you in, chuck you out.

(Female, 29)

The worst case, apart from the obvious of not receiving the sick note, would be, would be for them to just to say no you’re not having it, not, not give me an understanding of why they wouldn’t give me the sick note.

With no explanation.

Or not offering any alternative methods of recover for me.

(Male, 22)

The previous section considered the general aspects of the consultation. The following section focuses on specific aspects of the consultation from the examination through to the outcomes.

Theme 4: examination through to outcomes from the consultation

Five aspects of the consultation were identified, patients’ expectations relating to these features: an examination, tests, a diagnosis, treatment, prescriptions for medication, and outcomes.

Whether or not patients expected a physical examination depended on their symptoms and past experience; however, when they did they expected that the examination would be thorough and be considered from the patient’s perspective. It was important that the doctor explain to the patient how far they needed to undress to maintain and respect their dignity while being examined. Patients also wanted examinations to cause minimal discomfort, although the possibility of examinations being painful, uncomfortable or rushed was acknowledged:

And I think as well when you’re being examined, it’s nice that again that you’re treated respectfully and they, that, you know, they either explain what they’re doing or, you know, they make some kind of connection with you, because I think if you were just examined in complete silence, that would be quite intimidating and quite, it’s quite a, even if it’s not an intimate examination it’s quite unnerving being touched by someone who you’re not familiar with or who you don’t know very well so I think, you know, just to try and put you at your ease.

(Female, 46)

The best consultation is one . . . one to be at, for me to be as comfortable as possible, both sort of physically and emotionally, for them to, if I needed to remove any clothing or make anything obvious, to keep that to a minimum.

Yeah.

Erm [pause] and just for them to be very professional about it, you know just treat me I would say delicately, but again I suppose professionally and just you know not obviously not leer or anything like that.

That that comes up in the next one.

Yeah, just be professional, keep it . . . any removal of clothing or any discomfort to a minimum, yeah that’s about it.

(Male, 36)

Yeah, whether it’s, you know, don’t hurt me too much.

Yes.

’Cos that can get to where, an exam can be painful and actually come out feeling worse than when you come in.

(Female, 38)

One female patient expected that if she needed an intimate examination by a male doctor then a female nurse would be asked to be present:

If it was an intimate examination and it was a male doctor, I’d hope that he’d call the nurse in.

Right.

And that he would have a screen that I could get undressed behind and he would explain to me what clothing he needed me to remove and what he needed me to do.

(Female, 46)

Unlike the cardiology patients, most of the GP patients did not expect to undergo any tests while at the surgery or with their doctor, expecting instead to receive test results:

Er, they normally take my blood pressure because I’ve had some blood tests took, because I get numbness all down my arm and tingling in my fingers, pins and needles so they took blood, so I’ve got the results in there, so I’ll expect to get my results back as well for that.

(Female, 29)

And how are you expecting to feel throughout the whole entire process?

Well that depends, all depends on what the result of the urine test is, but it doesn’t matter which way it is, either there’s going to be something done about it or something ain’t, either they can do something or they can’t.

(Female, 72)

Most hoped for good test results, although one hoped that her test results would prove that there was something wrong with her:

The good thing about my blood tests is that they [the doctors] might take me more seriously ’cos they could see, like I could be anaemic and not have enough iron and things through lack of food, so I’m expecting, the best possible thing is that they see my blood results and think Jesus, I should have done something.

(Female, 29)

Patients expected to receive a diagnosis from their doctor based on the explanation of their symptoms and answers to any questions asked by the doctor, combined, when appropriate, with an examination and test results. In receiving a diagnosis patients wanted this to be honest and accurate:

He will examine me where I have the pain.

Right, OK right, so GP will physically examine [you] right.

And then he will give me his opinion on what he thinks it is.

(Female, 58)

I want an honest diagnosis.

(Male, 58)

So how would you know he was being straight with you?

Well he would tell you exactly the score of what is wrong.

(Female, 58)

However, patients were aware that they might not receive an immediate diagnosis as further tests might be required and the doctor would wait for the results rather than guessing at a diagnosis. Patients also raised issues of doubt about diagnoses (e.g. having previous experience of a misdiagnosis):

Because I have in the past, I once went into a GPs with, with a, I don’t know what they call it, viral hepatitis B, the one that was going around like flu and the doctor told me I had stomach ulcers and treated me for those, so you know [laughs] so, you know, they can be pretty shocking.

(Male, 58)

Patients commented on the impact of receiving a diagnosis and that it could affect how they felt and their emotions, but that they would be better able to cope and to plan once they had the diagnosis:

Yeah, knowing what the outcome is going to be, I think that’s was it is. I’m a person what likes to know and if I don’t know then I worry.

(Female, 72)

I’d feel great, top of the world, just think about, again, right I can go and get dinner on, feed the cat, so you can start planning again.

Yeah.

’Cos when you come in you’re dreading, you don’t know who’s going to do that planning for you, but when you’re leaving you know exactly where you’re going and what you’re going to be doing, even what you’re going to watch on telly because you’re more focused too, because that’s not bothering you, that’s gone.

(Female, 47)

A positive diagnosis of a health condition appeared to make patients think beyond themselves to the implications it would have on the future and their family. As one patient put it, a positive diagnosis meant:

You’ve got to make decisions you don’t want to make.

(Female, 46).

Once a diagnosis was made or the state of an ongoing health issue was established, the next stage concerned how to treat the condition. Patients expected and/or received a form of treatment, with some expecting a specific treatment or an alternative treatment to their current one. As well as talking about treatment as a generic term, patients spoke more specifically about whether or not they expected a prescription. Some patients wanted medication and received this or wanted their current prescription altered:

As a prescription it’s easiest if the medication is, it counter the symptoms as powerfully as possibly so if you go to the doctors in the morning and feel down you go the, the pharmacy to pick up the medication by the evening that day you’re much better again and that’s really what you’re looking for.

(Male, 32)

Other patients did not want or expect medication because they did not feel that their existing medication helped, or they did not like taking medication:

So are you expecting a prescription at all?

No. No I’m not expecting a prescription at all.

OK.

Whether I will end up with one or not, I don’t know.

(Female, 59)

Issues of concern were raised about medication including side effects and having to pay for it:

some of the drugs have side effects that clash with other drugs and I’ve found myself recently being in that situation where they’ve introduced a third drug to counter balance and I don’t want to go down that route you know I just don’t like the whole idea that scares me.

(Male, 58)

Four main outcome expectations were identified from the data: general outcomes, referral, lifestyle advice and reassurance. General outcomes included positive outcomes for the patient, which tended to be what the patient hoped would happen (in short, that their health issue would be resolved so that there was nothing to worry about and they could leave the consultation feeling more positive):

I expect him to say right, I mean you know I’m your doctor and I’ve let this go on too long, I’m gonna to fix you because this makes you really ill and he’s my doctor so he should fix me, I’ve had it for like over two years, he should fix me [laughs] that’s what I expect.

(Female, 29)

OK, so you expected to go away feeling more positive, you was expecting a ten [rating] there?

Yeah, in a sense am I positive, yeah I am actually, ten [rating].

That’s ten as well.

’Cos I’m happy that (a) I know my tests are cleared, so I know there’s nothing . . . going on underneath, underlying . . . and secondly I know that this problem is . . . not going to cause me a great distress in my day-to-day life, that’s the reason I came to ten really.

(Male, 60)

However, when a health issue was diagnosed, the positive outcomes were connected to the patient starting ‘a journey leading towards recovery’ (male, 60), with a course of action decided on and possibly a timescale.

For some patients a lack of resolution of their problem was either their worst-case scenario or the actual scenario they were faced with, which led to uncertainty. They had the possibility of returning to the doctor if the problem continued or they felt that one consultation was not enough:

As I say if he’s inconclusive at that point it that makes the worrying even worse doesn’t it if you if you have a pain or something wrong and he says ‘Well, I’m not sure what it is’ then you immediately think oh [mumbles], yeah.

(Male, 32)

Just getting really nowhere in the sense that you’re still in the same position as I came two weeks ago really, that’s not going to go any, you know, I’ve still got the symptoms and the problems, but there’s no, there doesn’t seem to be any ending of it.

(Male, 60)

The negative outcomes for the patient were not necessarily connected with receiving bad news about their health, rather with being left dissatisfied or disappointed with the doctor and their (lack of) action:

Not getting referred would be the worst and just to come out feeling that I’ve got to go and stick with this indigestion again for another couple of weeks because I’ve got it now and then that’ll be back in two more weeks and that. I know that I’ve got to come and moan at them again.

(Female, 29)

Yeah, obviously I’m disappointed because I didn’t get a definitive answer to what my query was that I went in with.

(Female, 46)

One specific outcome that patients mentioned was a referral. If a patient was to be referred, for example to a hospital for further tests, they wanted an explanation of the process but more significantly an indication of the timescale. Patients varied in their opinions towards referrals: some patients did not like or trust hospitals and wanted to avoid a referral whereas others did not mind:

I’ve got an appointment not for the doctors, I’ve just got an appointment with the hospital and I’ve got an appointment with a specialist about my numbness in my arm, so I won’t be seeing the doctor obviously, specialists at the hospital, so that’s fine, they’re going to send me appointments as well.

(Female, 29)

Zero out of ten would be, ah I had to go the hospital, referred to the hospital, I come out, I wouldn’t be smiling, I wouldn’t be crying, I’d be a bit deflated and then all the way walking home, that’s just going to bother me and just think, why couldn’t he just do something, you know.

(Female, 47)

The doctor was viewed by patients as a source of (lifestyle) advice and in general this was viewed as a positive aspect of the doctor’s role. However, this positive view changed to a negative view if patients felt that the doctor was expected to or might actually advise them to change their lifestyle for the benefit of their health, for example by stopping smoking or moderating their alcohol intake:

I’m getting like a lecture [about smoking] from the doctor about what, so he’s like really going on about it sort of like what sort of damage it’s expecting to do to you, etc. etc. you know if he really starts dragging it out then to me that feel like a lecture and that would be the worst scenario for me.

(Male, 31)

Well if I get any lifestyle advice, I’m sure they’ll tell me . . . I’m sure they’ll tell me that I should take more exercise and to, to moderate for certain my alcohol intake, that will be the, that will be what they, I would be very surprised if they say anything beyond that really, my diet and stuff is pretty good, so I think that’s what they’ll, I think that’s what’s likely they’ll just, they will, they will advise me, they will advise me just to live a more healthy lifestyle.

(Male, 58)

The final outcome that patients expected was reassurance:

I’ve wasted ten minutes of his time, but the best ten minutes of my life, just to come out feeling a lot better.

(Female, 46)

What, I just, I really just come to see the GP, I think mainly for reassurance, I’ve got something that reoccurs, has done for the last five years, so it’s just really, I don’t think there’s really a problem there, but I want to find out, that it’s not what you think it is, it’s fine.

OK.

So that’s really what I want, I’ve come for reassurance.

(Female, 47)

Although not every patient expected to be or felt reassured by seeing the doctor, reassurance was an important outcome from having seen the doctor. This provided patients with a sense that everything was all right and that their particular concern or health issue was not more serious.

This section has considered the stages of the consultation and what could be broadly described as the expected good practice from the patients’ perspective, which would lead to the patient leaving the consultation satisfied. The next two sections consider underlying themes of spaces and time.

Theme 5: spaces

Three spaces were identified by the patients: the surgery or practice, the waiting room and the consultation room. Several issues were mentioned by patients in relation to the space of the surgery/practice. Most patients had been with the practice for a long time and rather than comment on the physical space of the practice it was the people within this space that mattered, in particular the receptionists and the nurses. The receptionists, when mentioned, were mostly regarded as welcoming, and were expected to greet the patients, answer their questions and be pleasant. It was hoped that the receptionists would not be inattentive or show a lack of interest in them:

But I would expect her [the receptionist] to look up, smile, hello, how can I help you.

Right.

I’m Mrs [name] I’m here for my appointment at ten o’clock, oh yes you, the doctor will see you shortly, if you would like to take a seat and wait.

(Female, 46)

They’re very quick to answer when you come, unless they’re on the phone or anything, but most of the time there’s somebody there to answer and if you feel you want to have a talk you can go, if they’re not too busy and you can talk to them.

(Female, 72)

Well when I came in the receptionist was talking to a colleague behind the screen and she was aware that I was there and she didn’t (come over), she finished her conversation before she came over and I, I wasn’t irritated but she was, I noticed it.

(Female, 46)

Nurses were contextualised by the patients as carrying out a variety of routine or minor aspects of health care and might be seen if the doctor was unavailable:

I mean you go and see the nurse, she does syringes your ears, takes blood tests.

(Male, 58)

Well I saw the practice nurse Friday and she took my blood pressure and sample and everything was clear so I haven’t got that to go through today.

(Female, 72)

After arriving at reception, patients would wait in the waiting room. The expectations of the waiting room included the environment being well managed, comfortable, friendly, having an appropriate temperature (not too cold or too hot), being clean and tidy with comfy seats and having activities that a patient could take part in (e.g. reading materials, children’s toys):

How would describe your perfect GP waiting room?

Not too warm and not too cold.

Right.

Magazines.

Yeah.

Unobtrusive music perhaps playing.

Yeah.

If I had children with me I’d expect toys or something there to amuse the children, comfortable seating, light and airy.

(Female, 46)

It would feel like a sort warm area or atmosphere that you’re actually in, and not, when you walk in somewhere, the worst thing is having some like people staring at you see, if you’re coming into a room where everyone’s there for the same reason but everyone’s erm sort of pleasant and polite.

(Male, 22)

I would expect to be able to sit down, have room to sit down and I would expect the seating to be relatively comfortable, I would expect the experience to be you know not to be sitting on dirty seats in a messy waiting.

This is in the waiting room?

Yeah yeah. I would expect it to be kind of ordered, not over the top to the point where you don’t feel comfortable with it [laughs].

(Male, 58)

As has previously been suggested, activities appear to reduce the anxiety of some patients. Patients also referred to listening to music while they waited as being a positive aspect. One patient regarded the waiting room purely in functional terms, as ‘simply a place that you would park your body’ (male, 83).

In contrast, the patients did not expect (or feared) the waiting room to be crowded, unkempt, dirty, too hot, with screaming children and with glum and miserable people lacking activities:

[W]hat would be your nightmare GP waiting room?

Overheated.

Yeah, OK.

So to me being too hot’s worse than being too cold.

Yeah.

Noisy.

Noisy.

No reading materials, peeling paint, scruffy, uncomfortable.

(Female, 46)

[W]hat would be the sort of nightmare waiting room, what would that look like and feel like?

Nightmare waiting room, I, oh, well it’d be small.

Right.

It’d be busy and I think the worst thing where as people got all different ailments and they’re coughing and spluttering over you and

Right.

And you get the odd person that has, not through their fault, but who’s got body odour and things and they’re sitting on top of you.

Yeah.

And then you’ve got families with children in prams that are, the kids are getting restless, screaming their heads off and then you’ve got the poor receptionist with the phone going and someone having a go at her, because they haven’t got an appointment to see the doctor on time, to what they thought, so and because she’s all flustered, this kid screaming, this guy smells and someone’s puking up in the corner [laughs].

(Female, 47)

Once in the consultation room, patients expected this space to be clean, cosy and a space in which they would feel calm and happy. With regard to the physical aspects of the room, it would be private, closed, a confidential space. A few of the patients emphasised the importance of the consultation room door being shut whilst they were with the doctor:

[A]re doors open or closed?

Well yeah they’re always closed so it’s always sort of private.

(Male, 58)

That would be shut, I want that to be shut because you know I think that’s private you know although it’s not, just a suggestion if the door’s open then you know people keep walking past and coming in and out and you don’t get the attention of the doctor anyway, so I expect the door to be shut, is that what you mean.

Yeah, I just wondered whether you expected it to be, you know, left ajar, open, shut or what?

Shut, I like it shut ’cos I like to be full of attention [laughs], but I don’t seem to get it so I might try it open today, but no I expect it to be shut.

(Female, 29)

Patients expected the room to be functional as well as pleasant, and to be able to see that the room was clean, tidy and organised and had appropriate furniture, for example a bed, desk and computer:

Well, desk set out neatly obviously with this one you’ve got the examining table there and it’s tidy, scales sort of everything in it’s place you know no clutter, depending on what they do in this surgery I mean you go and see the nurse she does syringes your ears, takes blood tests if you go somewhere like that I suppose you expect everything to be out of the way no syringes and stuff lying around.

(Male, 58)

[W]hat makes a typical GP’s room for you?

Well the desk, the computer, the you know the stethoscopes and the, and the bed you know, with your screens and things like that, usually you know your usual things that you’d see.

(Male, 45)

The patients did not expect the consultation room to be impersonal or for this space to be dirty, smelly, unhygienic or cluttered:

Yeah a nightmare doctor’s office would be just sort of clutter everywhere, looking like it hadn’t been tidied up at all and maybe was just left the way it was from the last patient who’d been in, so a lot of evidence of the last consultation that they’d had. Maybe looking like it was a general workspace, again there’s no personal effects or anything in there or nothing that identifies it as being a particular doctor’s office, then it makes it a little bit less friendly and less personal. And obviously the other thing is obvious dirt or rubbish left around so if the sink was dirty or maybe there was some, you know, say some swabs or something that had another patient’s blood on them or something like that laying around, something just basically unhygienic.

(Male, 36)

I think it’d put you off if you sat in a doctors you know in their actual surgery bit with a grubby floor and you know or dirty carpets and finger marks all up the walls and all that sort of thing that would probably put you off a bit.

(Male, 45)

Although the patients commented on the spaces that they inhabited during their visit to the doctor’s surgery, it was apparent that a lack of attention was given to these spaces, even when the patients were specifically asked about them:

[W]hat things are you expecting to see in that time period?

Nothing really, just the doctor.

Right, anything else about the physical environment?

No, I’ve been coming down here too long, I don’t even look around now.

(Female, 81)

That the room would be pretty plain and clinical with some

Well I didn’t take much notice of it as we were talking together so I didn’t really bother with that.

(Female, 72)

It wouldn’t bother me if that [the consultation room] was just painted white or black, that really don’t ’cos I’m there to see him and not the décor if you know what I mean, you’d expect it to be clean.

(Male, 45)

As with the cardiology patients (see later), a ‘taken for grantedness’ existed about the spaces of the surgery/practice, waiting room and consultation room, suggesting that patients did not feel that there was anything too wrong with these spaces and that they fitted their requirements.

Theme 6: time

Time was an oft-commented on expectation. As with the cardiology patients, patients in the GP surgery expected to wait before seeing the doctor. Most did not mind waiting as long as this was not for too long. However, waiting had an affect on some patients and they could begin to feel anxious or become fidgety. Although patients were aware that a delay could be the result of an emergency, they still wanted an explanation if they had to wait:

Because I’ve never, I mean all the time I’ve been here, everything has just, I’ve not had to wait long, even with appointments I haven’t had to wait long and to be quite honest.

(Female, 47)

I wouldn’t expect to be seen instantly because I know that patient’s appointments can vary in length.

Right so

So I wouldn’t have any great expectation to be seen instantly.

(Female, 46)

Really I was getting fidgety, tapping my nails, picking at my nails, tapping my watch, that’s me getting anxious and getting really, really getting ready to walk, if I hadn’t been going in the next patient, I would have said I’m going.

(Female, 38)

It was very uncomfortable about another ten minutes longer I’d have been gone, I wouldn’t have been here, that was how bad as it was getting because I was starting to get quite stressed out and quite sort of anxious and quite as I waited and I know, I know I’m getting to that point because I start I start sort of stretching and start sort of like flexing sort of thing you know, clicking all my bones and stuff and normally when I get to that point it’s not long after that point before my patience go you know and I start being rude and you know can be aggressive so yeah, a bit longer and I’d have been gone [laughs] yeah.

(Male, 31)

Yeah. If they’re running behind times, something’s happened that’s quite acceptable, what I find difficult is sitting here, you think what the heck’s going on.

(Male, 60)

Yeah, the only time I can imagine if it was, is if there was an emergency, something like, someone that needed his time and then I’d be happy to sit back and wait, so but, I think the longest I’ve waited is fifteen minutes.

(Female, 47)

For some patients, having to wait was significant because they had only a limited amount of time, for example they had had to take time off work to see the doctor and did not want to waste this time waiting:

I get limited time off work so I like to get in and get it sorted and get out.

Right.

’Cos I have a lot of things to do and I don’t have a lot of time off work, so I have to fit a lot in.

Yeah.

So I have to get in, get out, get it sorted, you know, and get out, so that’s my main point.

Right.

That’s why I rang up yesterday for an appointment so it might sound weird or selfish but that’s just the way it is with me, you know.

(Female, 38)

In contrast, waiting time could also be beneficial, for example patients could use the time to compose themselves:

Yeah that would, because I think even when you get in, you don’t want to go straight in to see the GP because, you go to sit down and think about what you want to talk to him about and if you, he takes you straight in, you ain’t got time to think about what you want to say.

(Female, 46)

Patients expected the doctor to take their time and for the consultation to last for as long as it takes, allowing time to talk and not being rushed:

So but not rushed, so that everything so that they take their time over things and actually show an interest, but that they get the information that they need, examine anything that they need to examine without it taking too long really.

(Male, 36)

If I had a problem, I’d like to see him for as long as it took me to make my feelings felt if you know what I mean, to say how I feel, what’s wrong and for him to sit there and have the time to tell me, you know, it’s not that [name of interviewee], it’s not this, you know, we’ve looked at everything, what I think is this, this and this, maybe I need counselling or maybe I need some tablets, but to explain to me.

Right.

And what’s the best way forward to make me better or, you know, you’re fine but if you’ve a problem come back, so he’s got time to talk to me.

Yeah.

Instead of maybe having to look at who’s coming in next or what’s coming up next.

(Female, 47)

Some patients aware of the time pressures on doctors tried not to take up too much time. Patients were keen not to waste the doctor’s time and were worried that they might be doing this, but, as noted earlier in discussing outcomes, reassurance was an important outcome for the patients, even if they ended up feeling that they had wasted the doctor’s time:

I mean I’m just thinking the ones that come after you know I don’t want to take up more of her [the doctor’s] time that I’ve got to.

(Female, 72)

It’s though he [the doctor] had no time for, he got no time at all.

But thinking about you and your feelings how would that make you feel?

I would not, I think I’d feel I’d wasted my time even coming here basically.

Right.

Yeah, a waste of time, that was a waste of my time and his and maybe a waste of my time and also I would feel quite let down.

(Male, 60)

Because you don’t want to waste his [the doctor’s] time, or well I don’t, I don’t want to waste his time unnecessarily because a lot of people may need that time than I do and when I go in, even though when he reassures you, yeah, that’s fine, that’s OK, go away, don’t bother me ‘til the next time, then I feel guilty when I leave, because I feel as though I’ve taken his time and I shouldn’t have done, somebody else might have needed it, I don’t know whether that’s just me or so I’ll go away feeling better, cos I know I’m alright, but I’ll feel a little bit guilty because I feel as though I took, sort of half an hour of his time and possibly didn’t need, maybe I would have seen the nurse, that might have saved his time, but, but I’m sure I’m going to go away and kick my heels and think, that’s me until next time.

(Female, 47)

Minor themes

A number of minor themes were referred to by the patients. These included age, the body, computers, other patients or other people, past experiences, the patient’s own manner or character and patients seeking the doctor’s help on non-medical issues.

Theme 1: doctors and patients

This section considers the attributes that patients believe are positive and negative for doctors to display during consultations, patients’ views towards doctors and the expectation that patients would see a specific doctor when attending the cardiology clinic.

In the interviews, patients told of their respect and trust for doctors, viewing them as busy and with pressures on their time, while recognising them as people. Patients described what they believed were the characteristics or attributes that they would expect the doctor who they saw to display, as well as those that would not be beneficial to the consultation. The positives attributes were for doctors to be interested in the patient, make them feel comfortable and at ease, know (something of) the patient’s history, respect and treat the patient as an individual as well as ask appropriate questions and answer the patient’s questions:

[S]he always makes me feel very comfortable.

OK and how does she make you feel very comfortable may I ask?

Erm . . . she listens.

Right, yeah.

She listens to what you have to say, she gives you time, she doesn’t put you under any pressure as regards to speed or gathering your thoughts or anything like that, if you can’t, because sometimes when you’re in a consult, a consulting room it’s sometimes difficult to remember the name of drugs and this kind of thing, and she’ll usually help to remind you if you can’t remember.

(Male, 68)

And her [the consultant’s] approach and, I got no reason to doubt, you know, I’ve only been treated with kindness and respect and she explained what she’s going to do fully and you know that I took as given.

(Male, 71)

Yes, normally she gives me a diagnosis on how things look medically and if there’s any problems that you want to put to me or and, and tries to sort of really sort of answer what you’ve, if you’ve got any queries so, that’s if I’ve got any.

(Male, 47)

In contrast, the negative attributes that patients identified would be for a doctor to show no interest in them, to appear to be incompetent, inconsiderate, impolite and to not listen to them:

If I had been seen by an incompetent or a consultant who’s running out of time, rushing it, or who, the whole idea of sending away to the hospital is a [sounds like: diagnosis] sometime, consultant.

Yeah, so the worst you could imagine is that you’d be seen by an incompetent doctor, who was in a rush?

An incompetent doctor, yes.

OK, so that’s, we’ll give that a marking of

That’s quite right because even you can be qualified, you could be incompetent.

(Male, 76)

OK, so if you imagine your nightmare consultant, how would they look like and behave?

Well if they’re not into you, you can usually tell by the mannerisms of them if they’re doing the job or up to the job, sometimes they’re not you know overly, we all have off days, but sometimes, in some departments, you can tell they’re not even listening to you, let along take any notice or bothered about your situation and that, that would be the worst thing is the very demoralising, you go up there to see these people and just do the end product with badness wouldn’t be too good.

(Male, 64)

One likes to think that they have an interest in your, in your health and well-being, so yeah worst-case scenario would be you know just a total disinterest, total lack of er history, situation I guess even knowledge, you know.

(Male, 60)

As all the cardiology patients were recruited through one consultant’s list, nearly all expected to see this specific consultant. This expectation was not without foundation: it was based on either receiving a letter confirming the appointment and stating that they would see that consultant, or the fact that their previous appointments had been with that consultant. Patient preference was to see the specific consultant and this was also based on what they viewed as a long-term professional relationship with that consultant. A more common reason to want to see the consultant was because of their seniority over the registrars. Some of the patients were aware that they would not necessarily see the specific consultant and regarded this with some scepticism, believing that it would not be the same, and those who had been treated by the consultant in the past were concerned that another doctor would not know them or their history as well as they believed that their consultant did. Although there was a strong expectation of being seen by the consultant, patients felt that they would be satisfied with the doctor they saw as long as they were dealt with professionally:

Well they tell me in my letter when they sent it to, you know from the hospital, that I’d see Dr [name of doctor].

Right, so that’s who you’re expecting to see, is it?

Yeah.

(Female, 73)

And the, I shall demand to see the consultant that I have been referred, usually you go to the junior or whoever’s available because, but normally the consultant, every third time, he or she is supposed to see you, so I hope this will be my third time, and Dr [name of doctor] will see me.

(Male, 76)

I guess you do like to see the main person, you feel they’re the one who have got the handle on it and have experience going back rather than seeing someone who, just picks up your notes and you know that type of thing.

(Male, 60)

I’ve got to be honest with you, I wouldn’t mind who I saw, I’d prefer to see Dr [name of doctor] ’cos I’ve seen her ever since I first started going to hospital but I think I’ve only ever seen one other person, every time I go she seem as though she make it her business to see me.

Good, so the worst would be what then, to see somebody totally different or?

Somebody different ’cos the only reason is, if you see differents they have notes.

Yeah.

But that’s not the same is it?

(Male, 82)

Because she’s my consultant and, you know, she knows my past history.

(Female, 64)

Nothing really, I go up there ’cos I got an appointment, I just wait to get in to see the person who’s on the list to see rather than one of the lieutenants, if you know what I mean, I usually do see Dr [name of doctor].

(Male, 82)

The consultation between the doctor and the patient can be viewed as having a standard ‘script’ with patients recognising the roles that they and the doctor take. Patients tended to expect a ‘normal’ or ‘straightforward’ consultation in which the doctor would talk to them rather than at them and ask relevant questions, for example about their heart, how they felt and whether or not they had any concerns. Patients would be able to answer these questions and the doctor would pick up on their answers:

Ask the obvious questions, do you feel any different to you did like from last year and if there’s anything you’re experiencing that you haven’t experienced before and you know questions like that, the obvious things that, if things aren’t right they would probably pick up on if you said something, oh I feel dizzy, or now and again, or can’t keep awake, or whatever you’d expect . . . you see them writing notes and things and they’ll possibly action on it either by reducing a certain drug or increasing a certain drug or doing away with one or giving you alternative one.

(Male, 64)

In return, patients expected to have the opportunity to ask the doctor questions or to raise any concerns, which they hoped to articulate clearly and, for some patients, with a degree of assertiveness. Patients expected that the doctor would listen and be able to explain in such a way that they could easily understand their situation and progress (or not). This would include an explanation of their symptoms and situation regarding their health and for the answers to be tailored to them rather than receiving a generic answer:

Doctors are much better nowadays than they ever used to be, with especially people like Dr [name] and others that I’ve had over my treatment over the last few years, they’ve been much better at talking to you and explaining to you what’s happening or what’s about to happen or you know what’s wrong whereas in the old days they used to just to use technical terms you didn’t understand and you came out of the surgery none the wiser.

(Male, 74)

One patient specifically talked about wanting to know ‘the truth’, aware that doctors may not always tell patients the truth if this is particularly bad news. Patients revealed an expectation that their doctor would be happy, satisfied or pleased with their progress, and that they might also identify other health issues, which might or might not be related to their cardiac health. They also wanted to talk about other health issues and hoped that the doctor would be interested in these:

Yes it went very well, the examination determined that my blood pressure was normal and she seemed to think everything else was doing well, not, not normal obviously, but you know good from that point of view.

(Male, 74)

I know Dr [name] was very pleased, so and I felt pleased about it, so yeah I couldn’t have come away from it, I mean you do come away sometimes feeling depressed from them sort, you know if things, the news is not that good, but yesterday I expected it would be good because I’ve been feeling so well just lately, so it went absolutely well, yes.

(Male, 68)

Just to discuss the situation with her . . . I’d express my thanks to her as such because she’s brought it to attention which she, I mean they thought that the aorta was a bit swollen that’s why they had the scan done and then they found the aneurysm there.

(Male, 74)

Although the doctor–patient interaction has been here likened to a script, the patients were aware that the script could easily be disrupted, thus altering the experience of the consultation and its outcomes. Issues around communication were central and at times it was felt that doctors might not explain themselves clearly enough when talking to patients, which meant that the patients would not (fully) understand what doctors were saying about the state of their heart or their future prognosis:

I don’t know, my doctor say that that’s sort of my heart was a bit, now what did she say, a bit flabby.

Right.

So I don’t know what she meant by that.

(Female, 73)

[W]hat would be the worst that you could possibly imagine with respect to the doctors being professional, just being hypothetical?

Well to come away and not really know what was happening and, and what you can expect in the future.

So to be left in the dark totally?

Yes, not understand a word that they’ve said.

Yeah.

Or too technical or too . . .

(Female, 72)

The manner of the doctor might also have an effect. One patient described a doctor as being ‘a little bit forceful’ and another was aware that the doctor ‘will tell you off’. After their consultation another patient described the doctor they saw as ‘not as severe as expected’:

Yeah, well I didn’t get quite as much stick as I thought I was going to.

Right.

So probably, I mean she were obviously weren’t happy that I was smoking again and said, you know, OK you’ve proved yourself you can do it, so you can do it again sort of thing, because I did last eight months, so, so that’s probably, I didn’t, that weren’t quite as, she weren’t as severe as I expected her to be.

(Male, 51)

Patients also identified expectations of having difficulties in understanding what was said by, in their words, ‘foreign doctors’. The semi-structured interview style did not allow for this issue to be explored in greater depth, but it was clearly situated as a communication issue:

The worst doctor you could see?

Yeah, the worst person I would say is, sort of one of these foreign people you can’t understand when they talk to you.

(Female, 73)

Another interviewee also suggested that he wouldn’t be able to understand ‘somebody who’s foreign’, basing this on his past experience in another hospital department, but demonstrated greater reflexivity about this issue, acknowledging that his English regional accent might be just as difficult for the doctor to understand:

Well I suppose my worst bit would be again somebody who’s foreign who I couldn’t understand and don’t really understand me, you know.

Right.

So I have had that happen on a, not with the heart people but on another visit to the hospital following an operation I couldn’t understand what the man was saying and I’m a bit [regional] accent and I don’t think he could understand what I was saying.

(Male, 51)

As well as the verbal doctor–patient interactions, just under half of the patients expected a physical examination from the doctor they saw, aside from any tests or test results that they were expecting. If they were physically examined, the patients expected the doctor to explain why this was necessary and that it would be carried out correctly and thoroughly and that one of the purposes was to aid a decision about future treatment. In the post-consultation interviews, it was clear that, although a physical examination might have been expected by the patients, not all had received one:

She’ll probably just listen to my heart and my lungs and give me a short examination, she might take my blood pressure, but probably not, because my blood pressure is OK.

(Male, 68)

Well I don’t expect to see, but I expect them to take a check on the

The physical examination?

Yeah, the heart beat, etc., etc.

Right.

And then to decide [future treatment] on the outcome of that whether they’ll do me another one or whether I stay with what I’ve got.

(Male, 80)

Oh well, ten [rating], ’cos I was examined.

Right and it felt good did it?

Yes.

So . . . so what was it about it that felt good, what was, what made it?

That someone was listening to it [heart] and we weren’t just sitting there talking.

(Female, 72)

She says that she doesn’t really need to examine me, it’ll be because she’s very well satisfied about how I am [laughs].

(Male, 68)

In the context of how the patients could expect to feel emotionally (or actually felt before their consultation), this could be argued to fit along a continuum from patients who felt anxious, apprehensive and worried through to others who felt relaxed, unworried or – as one interviewee described it – as though they had an ‘inner calmness’:

Yeah, a little bit apprehensive I think, but healthy so, I I feel pretty healthy I feel OK, so I’m not too worried about that erm I think that’s it really, I just hope to sort of come out in an hour’s time and all to be well.

(Male, 60)

I’d be worried sick I think.

(Female, 73)

Yeah, I, I’m, I’ll be quite calm and relaxed, I know I will.

(Male, 74)

Another interviewee, a 71-year-old male, suggested that he would not experience any emotions:

What sort of emotional things are going to be running though you?

There won’t be no emotions, there won’t be no emotions.

(Male, 71)

When patients talked about their expectations for their health and how they felt about this, they appeared aware of their state of health and the degree of seriousness around their particular cardiac condition and two broad themes emerged. The first was an optimistic theme. Patients in the pre interview suggested that they felt well and healthy and hoped to receive positive news from the doctor, for example that their pacemaker was working well or that their medication was having a beneficial effect:

Hopefully I’ll get a good report, I think everyone expects to hear better than, but you’ve to sort of wait and see really, but, yeah, I mean I feel comfortable and generally healthy, sort of in my progress from the op, so hopefully I’d expect some good, some sort of good follow-up report or confirmations from the ultrasounds and stuff like that.

(Male, 47)

No, no, I mean sitting here, I, I’ve had no chest pain since I’ve been on my medication and I, I feel A1 as far as I suppose a seventy-four year old can be, yeah.

(Male, 74)

I suppose if she said don’t plan a holiday or Christmas then it might jolt home that, at the moment she ain’t said that so I have to go in there with open mind.

(Male, 71)

The second theme that emerged was a fatalistic view. For some, this was the worst expectation that patients could identify:

My worst expectation is that she would say, well it’s got so blooming bad now, you’ve got to get your affairs in order.

(Male, 74)

Obviously, the nightmare is to say that things have drastically gone downhill you know, I guess the worst-case scenario is that we’ve just found something that’s going to kill you in the next six months.

(Male, 60)

Yeah, but actually she said there’s nowhere to go really, you know, in the heart, ’cos they’ve already, you know, put two lots of graphs in like.

Right, so there’s not much, there’s not many options for them?

No, I’m just, actually I’m living on borrowed time [laughs].

[Edit]

Yeah, yeah, yeah, I knew that, I mean that, by going on last time they said they couldn’t do nothing for me and she just shrugged her shoulders, she didn’t know what to say like, you know.

(Male, 72)

This section has outlined the expectations that patients have about the doctors that treat them and the consultation, and how the patients expected to feel or actually felt in terms of both their emotions and their health. The next section draws together aspects that are part of the consultation: tests, treatment and medication.

Theme 2: tests, treatment and medication

Before their consultation with the doctor, most of the patients expected to be measured (sometimes including height) and to undergo one or more tests, for example an electrocardiography, radiography or blood pressure. A greater number expected to be weighed because this is what had happened on previous visits to cardiology. After arriving at cardiology and waiting in the waiting area, being weighed was the first stage of their appointment. Weight was an issue for some patients as they had been told to lose weight and expected that they had done so, but were concerned that this weight loss still might not be enough:

Yes, I mean you go in and ask or let them know you’ve arrived, they normally obviously er notify that you’ve arrived, normally it’s about five, five minutes or that you expect and then someone, a nurse will come out and say can we, Mr [name] can we come and weigh you and measure you, so it’s sort of a thing of I’m familiar with.

(Male, 47)

Vary, sometimes it’s long, sometimes it’s not so long, but its always a wait, it’s never straight in and then, one of the nurses will come out and want to weigh me and measure me, I don’t know, they don’t bother to measure you now, they’ll weigh me.

(Male, 74)

Right, so you’re expecting some sort of discussion are you about, about your weight?

Yes, yes, just a quick word, it won’t be a real discussion because it’s not really, it is just a conversation really rather than a discussion because it’s nothing to do with her really.

(Male, 74)

After being weighed, most patients expected to have their blood pressure taken and undergo at least one test relating to their particular heart condition. This was based on their appointment letter mentioning that they might undergo tests, or the patients’ past cardiology appointments. They were aware that the results of the tests were used to follow the improvement or deterioration of their particular condition. However, whether a patient had any tests (or the tests that they were expecting) depended on whether the doctor felt that they were required. The patients did not receive and did not expect to receive the test results until they saw the doctor in the consultation, when these would be explained and discussed. Patients hoped that their test results would indicate an improvement in their particular condition (or at least that it would not have deteriorated) and that they and the doctor would be pleased with the results:

Well say you’ll just wait in the reception, you, you, you’re called, you’re weighed and blood pressure is done and that sort of thing and then go back to sit, wait again and you’re called when your consultant or you might go for a test, like I said earlier, I don’t know what they call it, an ECG or something they put a tape on you and wire you up and get these machines on you to test heart beat I assume and things like that, the time you’re called back again, they’ve got the results of them and then you go and see the consultant for the last bit of the appointment.

(Male, 64)

[S]he told me straight away that the echocardiogram was exactly the same had no change which was good because that was my only, that was the only thing that could have been really in my head could have got a bit worse or something, but it’s the same so that’s great yeah and the doctors who were very pleasant, yeah, we had a chat you know so yeah it’s fine.

(Male, 60)

Although treatment can be in the form of medication, for the purposes of this section it is considered separately. Patients tended to be unsure what, if any, treatment they would receive. Some patients did not necessarily expect to receive any treatment, as there were concerns from a few that their heart was too damaged, or that the risks compared with the benefits of undergoing a particular treatment were too great:

Well I think if they tell me now that my heart has been damaged in my terms that is, and no they can’t do anything else or they don’t reckon to do anything else and I’m left like this, what I’m feeling, that’s zero [rating].

(Male, 80)

During the course of the consultation, medication was an issue that both the patient and doctor were likely to talk about. Although patients expected to continue on the same medication, some specifically wanted to discuss their medication, with particular reference to the side effects they experienced. In general, patients either experienced side effects from taking the medication or noticed that other aspects of their body/health were affected by taking the medication. The patients expected the doctor to discuss their medication and side effects and offer appropriate advice, expecting to be told that they would have to cope with the side effects as it was more important that they continue taking the medication:

All, all those sort of questions I expect to be asked, I will, this time, be asking her about the medication, because one of the, one of the things I’m taking, the beta-blockers, which are a, a relatively recent addition, i.e. the last year or so, I seem to be feeling the cold much more than I ever did before and whether that is again, we’re back to that same old question, how much of that is the age of the beast.

Yeah.

And how much of it is the heart problem.

Yeah

I shall ask her that, whether she’ll give me, I doubt she’ll be able to give me a definite answer.

So you’re not expecting a definite answer?

No. She will say, well the medication is more important than the, than the cold is, wear an extra pair of gloves you know.

(Male, 74)

You see I take quite a bit of prescription now for other things and I worry that some of this lethargic-ness is brought on by these drugs I’m taking, it may well be, I don’t know.

(Male, 80)

Patients hoped rather than expected that they might no longer need some of the medication that they were taking and that the range of medication, number of pills or dosages could be reduced. One patient’s ideal was to ‘scrap the drugs and carry on as normal’ (male, 74), while knowing that this outcome was very unlikely. Other patients expressed their expectation for further medication. This was not as an opposite of a patient hoping to no longer need some medication; rather, they hoped that a new drug might have been produced that would help their heart and prolong their life:

Yeah, because what it is, I went into Papworth last year to have me, they wanted to laser my heart out, to get more blood into it, so I could have me knees done, but the heart was too thin, and so they just had to come out of me heart and that, sent me home and just put me on medication and just hope that, they said that if something new comes out we’ll get in touch with you straight away like.

So are you expecting to be put on a new drug regime?

Well, well, well yeah I presume, you know, like if something comes up that’s like they can, that deals with the heart, that’s, it’s, it’s for my benefit and you know it will give me a bit more of a longer life [laughs].

(Male, 72)

Patients also discussed altering medication as an option, although, as one patient pointed out, when the doctor altered his medication he experienced practical difficulties:

I’ve tried to have words, not get angry, but try to say to them, look you’re changing these medicines from this, that and the other and the only thing is that I’m getting on a bit now, I think that the confusion part is that say for arguments sake that you know the shape of the pills and you know what you’re taking . . . The beggars change the shape and they change the name.

(Male, 71)

Patients are aware that, despite side effects, it is important to keep taking their prescribed medication:

You know and really the medication is sort of to keep everything on an even keel, that’s, you know, so, so that in future things won’t get worse.

(Male, 51)

Well yeah, because now there’s nothing to worry about, as long as I keep taking the tablets and I should be alright.

(Male, 72)

A cause of concern was when a patient had been prescribed medication from more than one doctor – whether or not the doctor they saw would be aware of all of their medication. The concerns voiced were broadly related to communication within the health system, for example between the hospital and their GP and vice versa, and whether medications would ‘clash’, that is, not be compatible if taken together.

Theme 3: outcomes

This section summarises expectations about the ‘outcomes’ from the patient visits to the cardiology department – effectively what they expected to go away with and how this may or may not affect them. To begin with the positive and negative outcomes are discussed and then the effects on patients’ lifestyles and their views about the experience as a whole are considered, before discussing how the cardiology department appointments could act as a form of reassurance.

The outcomes that patients expect from their appointment in the cardiology department can be divided into broadly positive and broadly negative outcomes. On the positive side, patients expected that they would receive a clean bill of health from the doctor and be able to carry on as normal. Alongside this, patients also expected to be given a diagnosis and a cure or a solution for their particular cardiac issue:

No, no, no I feel fine so I can’t say they’ve told me to do anything, so I’m just expecting to get a clear, clear, clear bill of health.

(Male, 82)

Really I suppose in a way I’m expecting them to sort of say, all OK carry on as you are sort of thing.

(Male, 51)

I’m sure I’ll be cured or I’ll get the best treatment they can offer.

(Male, 76)

Other patients hoped that they would come away from the consultation having been given a ‘good bill of health’ and told that they could get on with their life as normal without needing further surgery, and, for one patient, with a new lease of life:

Knowing that when they come in and examine me that, you know, I was put, well not A1, but I was in a better condition than when I went in there.

(Male, 72)

Well I don’t know, I’d just like to go and, and hear her say, oh well that’s fine you can go home and get on with your life.

So how would you feel if you heard that news?

Oh, over the moon I think.

(Female, 73)

I will tell you is simple [laughs] that’s your heart is so improved that you can expect a full, full term, whatever that might be, in other words, your heart isn’t going to affect anything, that would be the best scenario.

Right.

You’re going to die a normal course of the usual things that kill you off; your heart isn’t going to be an issue.

(Male, 74)

The negative outcomes ranged from patients’ awareness that the doctors could no longer do anything to help them, or being uncertain about what to expect in the future, through to patients hoping that they would not have to go into hospital or face further ‘work’ on their heart and be left vague, in the dark or ignorant:

What would be the worst you could possibly imagine for that particular?

That I needed further surgery.

That you need to

That I would need further surgery.

OK, right.

That would be the most scary thing and the worst.

(Male, 51)

Not to be told anything and left completely in doubt.

Right.

Complete or in complete ignorance.

(Male, 65)

Well to come away and not really know what was happening and, and what you can expect in the future.

(Female, 72)

What would be the worst you could possibly imagine with respect to the doctor and . . .?

My health was not as good as it was when I was last there.

(Male, 78)

The impacts of these outcomes on patients’ lifestyle raised an issue around the apparent lack of discussion about diet, which one patient was very surprised by, and smoking habits. Patients were able to live what they defined as a normal lifestyle, with their particular heart condition not affecting their lifestyle, with one patient appearing to have stabilised and another recognising that they were able to do things better after having been fitted with a pacemaker. The negative effects on patients’ lifestyle were awareness that they could no longer do things that they had been able to do, thus restricting their lives, and the likelihood of a shortened life expectancy:

I suppose if she said don’t plan a holiday or Christmas then it might jolt home that, at the moment she ain’t said that so I have to go in there with open mind.

(Male, 71)

Patients’ views towards the experience of their consultation varied, with some finding that there had been confusion around their attendance, voicing concern that the doctor who they saw was ‘not up to speed with everything’ (male, 60) and that there was a lack of information about a follow-up appointment. Individual patients in other contexts had experienced being given the wrong diagnosis, no support, a lack of privacy and a lack of interest from the doctor:

The worst I can imagine is if things went wrong and I did contact [the hospital] and nobody called me back and I perhaps couldn’t get through to the secretary or if I did get through to her if she had a word with Dr [name] and Dr [name] didn’t phone, I don’t expect any of that to happen.

Oh no, sure yeah.

Didn’t phone me. I would be upset, I would probably go to my doctor and have to go through that procedure and yeah that would be the worst situation really.

(Male, 60)

There were also some concerns about the NHS, with patients expressing a lack of trust in the system and being unimpressed with the administration, although generally patients tended to praise the NHS and were very happy and grateful for the treatment that they had received, with one patient saying that ‘I could have gone to Bupa [private health care provider in the UK] and I wouldn’t have got any better service’ (male, 65).

One of the outcomes that patients hoped to receive from their cardiology appointment was reassurance, but how this was achieved differed between patients. For some, reassurance was provided by a longer time period between hospital appointments (the opposite being greater concern attached to a shorter time period between hospital appointments) or being discharged and only needing to see their GP:

Yeah. That’s what it’s been so far and I thought that would continue, ’cos they would want to keep monitoring you, but obviously it’s going in the right direction and they don’t want to, you know there’s no need to do it every year, which I regard as a good sign.

(Male, 74)

Well I guess I come out, my expectation is that I’m going to be told that I . . . don’t need to come back basically . . . it’s back to the GP, so I mean if that happens, then that’s fine.

(Male, 60)

For other patients, having a hospital appointment and remaining on the consultant’s list with regular check-ups provided them with reassurance. As one patient put it, ‘It’s not the pills, it’s the five minutes’ reassurance’ (male, 60):

I, I don’t exactly enjoy is the wrong word, I don’t enjoy going to the hospital to be check up but at the same time it’s reassuring to see her about every 6 months.

Right, that’s interesting.

Because of my health problems that I’ve had in the past, it is a bit reassuring to be seen every 6 months so that’s my best scenario that she will say she’ll see me in 6 months time, the worst is that she’ll say she that doesn’t want to see me anymore.

(Male, 68)

Theme 4: spaces

In the course of the interviews, three main spaces were identified: the cardiology department as a whole, the waiting area/room and the consultation room. The cardiology department was regarded as busy yet smooth running as well as being quick and efficient:

Well I should imagine so, but when I’ve been before they’ve been amazingly efficient, I’ve always been surprised at the cardiology unit, they’re very quick and you don’t normally hang around much at all.

(Female, 64)

In talking about the waiting room/area, the patients discussed the positive and negative traits of such a space. The patients viewed a good waiting room/area as being clean, tidy, quiet and relaxed. It would also have activities including reading material and refreshments available, for example a vending machine. In general, the waiting room/area lived up to these expectations:

I’ve never felt as if I’ve been hanging around and waiting area’s normally relaxed, I haven’t been having to stand up and there’s things there to sort of help you relax like magazines and stuff like that.

Yeah.

To help, help you forget that you are waiting really so it’s generally a sort of relaxed environment really, it’s not chit-chattery noisy sort of claustrophobic environment, it’s normally quite an open, quiet and relaxing sort of environment, so yes I’d say that I’ve never even, when it’s been, has been busy in the past I’ve never really felt . . . sort of restless or anything like that.

(Male, 47)

Best waiting room, I suppose, one with a television in it.

Yeah.

Yeah, like when me daughter goes to the dentist, there’s a great big television in a, you know the waiting room, so it relaxes you a little bit and

Anything else to describe this?

Book, you know, books to read.

Yeah.

You know, while you’re waiting.

Yeah, so anything else about this?

Machine, if you’re allowed a cup of tea.

(Male, 72)

In contrast, a poor waiting room/area would be crowded with misbehaving children, uncomfortable, silent, unclean, with no books to read and patients fighting:

Well I’m actually seen when, at the old [name of hospital] years ago, I’ve seen families come in there with kids and they go on the fruit machine, not the fruit machine, the coffee machine, the crisp and they’re throwing them all around and then in that environment they actually destroy the cleanliness of the, of the room just by bad manners and I think that, that I don’t know what the hospital do about people like them, that’s just the way they’ve been brought up and I just saw one once at the old [name of hospital], it was chocolate tipped over and there was crisps thrown on the floor and I thought that ain’t on.

(Male, 71)

Well uncomfortable in a way that you couldn’t sit down maybe and relax, wondering how long you’re going to be waiting, whether you get an explanation of why the wait or yeah.

(Male, 47)

The consultation room was likened to an office, with standard furniture, for example a desk, chairs, a table, a bed/couch and a computer. It would be a clean and private space in which patients would feel comfortable to talk:

Oh, well I just thought that’d be an ordinary sort of room where you just go and see the doctor, to hear your results.

(Female, 73)

Yeah, well when we got there I went in the consulting room, there was everything there for, blood pressure machine, couch and all they, you know, oh blimey, the old, not the video, the

Computer?

A computer was all there and she got it up on the computer and that, so yeah, it was, yeah, very, I’ll give that ten out of ten.

(Male, 72)

There was a little room there with a desk and two chairs and nobody was there, so you could, you know, you could talk openly and get on if you needed to say anything sort of private, you could have done sort of thing.

(Male, 64)

Patients preferred the consultation room not to be cramped, crowded, dirty, scruffy or without privacy:

Well if it was people coming in and out and doing things, I suppose, a lot of distractions, yeah and a, a, cramped room, that wasn’t like that at all.

(Male, 74)

As long as it’s a room and it’s not full of the general public, I don’t mind.

(Female, 64)

Well in an open room where there’s no privacy and there’s people in and out and chasing round, noise and one thing and another where you don’t know where you’re coming or going.

(Male, 64)

The descriptions of the waiting and consultation rooms that the patients gave were relatively limited, but, as a couple of patients commented, what the rooms looked like was not their greatest concern:

I was more interested in what the nurse was doing than I was looking at the room.

(Male, 74)

As a patient I don’t have too much feelings about that [waiting room] because you aren’t here to look at the décor, you’re here to be treated.

(Male, 71)

Although many of the patients talked about the spaces they expected to be in, most reported that they did not take much interest in these spaces and, as the quotes above suggest, the reason for their appointment in the cardiology department was more significant than the spaces they inhabited and moved through during the course of their appointment.

Theme 5: time

Time and timing cut across other cardiology themes. In their interviews cardiology patients implied that they turn up for their appointment in good time and consequently expect to be seen on time or after a relatively short wait. What patients believed was a short wait was subjective and ranged from between 5 and 10 minutes to about half an hour. Many of the patients were used to being seen on time or having only a short wait. In contrast to a GP’s surgery where a patient would expect to arrive, wait and be called to see the GP, the cardiology unit followed a different pattern. Before patients had their consultation with the doctor (consultant or registrar) they had to go through several, albeit often short, waiting times before and in-between being measured, being weighed and having tests. Patients tended to expect that they would have to wait to see the doctor too. One patient described the flow of the different components of his appointment:

Well it was, I didn’t have to wait long at any time during the whole process, which was quite remarkable, it was a very good session actually, I think I waited about, I suppose five minutes before I went, was weighed, another maybe five, six minutes or whatever before I had the next step and then I did have about twenty minutes wait to see the doctor finally, but you know very good indeed I thought, all round.

(Male, 74)

Waiting before the appointment and between the segments was expected and patients were aware that the appointment could flow relatively smoothly or become drawn out, depending on how long the tests took, whether or not they required treatment and the length of time that other patients took. As a result, patients either had experienced or were aware of delays that would lengthen their time at the hospital. Some patients appeared to allow for this, suggesting a length of time that they expected to be in the hospital for, estimated to be between 45 and 60 minutes:

[A]bout twenty minutes I suppose.

So you’re expecting the thing to last twenty minutes?

Yes, plus a bit of waiting in-between which I understand you know, so yeah generally I suppose the whole thing including waiting times, forty-five minutes maybe.

(Male, 60)

I mean I don’t want to, my appointment is 10:40, I don’t want to be there until 12:00.

(Male, 76)

In the post-consultation interviews, the length of time that patients reported spending in the hospital appeared to be much less. For some, however, the opposite was true, for example a 73-year-old female patient in her pre-consultation interview stated that a wait of 15–20 minutes would be acceptable. In her post-consultation interview she explained that she had had to wait for over 1 hour before it was explained that her notes had been mislaid, and in total she had been in the hospital for over 2 hours (estimate based on interview). Although waiting is expected by hospital patients, when a short wait turns into a significant delay, as in this case, patients want to be informed that there is a delay, as well as be provided with an explanation and an apology:

Well I suppose if it gets into long waiting times, you know if it gets over an hour or something like that, I suppose . . . I would expect someone to come and say, awfully sorry, the doctor hasn’t turned up or she’s been delayed somewhere, it’s going to take a little while, can we get you a cup of tea or something.

(Male, 60)

The time delays were not always explained but when they were patients’ reactions varied. If the delay was caused through a fault in a system, for example the NHS as a whole, or the appointment system, or not having enough staff available, patients tended to be less forgiving, believing that the system should be better (several patients noted that they became frustrated by these time delays). Two rather savvy patients who were aware that later appointments were more likely to experience delays opted for early appointments:

I suppose as I’m going early in the morning, if that was later in the day then you’d expect to get delays, yeah, yeah, I would have thought an hour.

(Male, 74)

That’s right, right, I do try and get early, early appointments, then I can get up there early and I can get back to work, you see, as I said, I’m self employed and if I don’t work, I don’t get work, so, I’m left like three parts of the day, three-quarters of the day left to do something.

(Male, 64)

In contrast, patients also appeared to be happy just to sit and wait for ‘their turn’, and likewise an acceptable delay was one in which a doctor took slightly longer with a particular patient:

I mean it was immaterial I mean you know you have to wait your turn, I was not bothered, I just sat and waited and that was it, but Dr [name] did call me.

(Male, 68)

But if some patient takes a bit longer time and, and we are going behind, running late, I’m not worried about that.

(Male, 76)

You can, you can expect the obvious really if there’s a few people there that you’ve got to wait your turn really.

(Male, 47)

Delays caused by emergencies in which the doctors or other medical staff are called away to deal with another patient were also accepted. It could be argued that the patients’ acceptance of this is because, for some, it is a situation that they either have been in themselves or could be in the future:

Because sometimes they get called out on emergency and they, you know, especially if they’re in the crash team, they just get, and you just have to wait.

(Male, 72)

Like I say I was in the waiting room getting more stressed, definitely getting more stressed than I was like the sort of delay, but erm, you know I think you’ve got to say, I think you have to understand, I mean hearts are sort of front line thing in’t it.

Oh for sure yeah.

You know and people do get dragged in on a [sounds like nah-nah] I myself, I can imagine when I went in there I would probably, because I went in as an emergency, I probably delayed other people that were routinely going there.

(Male, 51)

In summary, aside from the medical aspects of the cardiology appointment, time is a significant factor because it can affect a patient’s emotional state. If everything runs (more or less) to time, patients appear to be happy with how they have been treated. If the appointment does not run to time or there are delays and unacceptable explanations are provided this can negatively affect the patient, which may make them feel frustrated, fed up, or increase existing feelings of apprehensiveness or anxiety about their appointment.

Minor themes

A range of minor themes that emerged from the data are briefly discussed below.

The clinic patient surveys

Two hospital cardiology clinics and six primary care centres were approached, agreed to participate and were included in the study. Laminated posters with information about the study were provided to practices to display in their waiting areas. The study sites were situated in Norwich, north London and Essex in the UK. The clinic patients were approached consecutively by a member of the research team and invited to participate, read the information sheet and complete the consent form. These patients then completed the pre-visit questionnaire while they waited to consult the doctor and the post-visit questionnaire afterwards. The short time interval between questionnaires was selected for practicality, in order to enhance response rates, reduce memory bias and enhance return rates. This approach led to some item non-response on the post-visit questionnaires as patients wanted to leave. The agreed approach was pragmatic given the lack of access to a sampling frame of (a list of) patients attending because of patient confidentiality. The clinic patient study further suffered because of prolonged delays in researchers’ honorary contracts being received, several train strikes on clinic days and cancelled clinics when clinic staff were on study leave or during holiday periods. Hence, the second arm of the study was initiated to enable the study to be successfully completed, which is described in the following section.

The population patient surveys

The Ethnibus survey is a monthly nationwide face-to-face interview survey of the main ethnic minority communities living in the UK (and white British people when requested). It is mounted by Ethnifocus (a research organisation), and governments, researchers and commercial companies can buy modules of questions on the survey. Ethnifocus included the self-administration mode of the expectations questionnaires in two waves of their ongoing Omnibus surveys of adults in Greater London, UK (spring 2010), after sifting their respondents for those with a pending GP or outpatient appointment within the next 4 weeks. This two-pronged approach had several advantages: to increase the sample numbers for self-administration modes of the questionnaires, especially for respondents with pending hospital appointments, for whom our hospital clinic recruitment was slowest; to increase the number of clinics that patients attended, reducing the likelihood of site-specific findings (the danger with our small number of participating clinics).

The Ethnibus survey is based on focused enumeration and stratified random sampling to ensure that samples are representative of the population. For sampling, Ethnibus uses census information on ethnicity across postal sectors and lists the postal sectors according to concentration. Standard indicators of ethnic status are used. Systematic random sampling is used to ensure an even spread of postal sectors with differing concentrations. The number of addresses that are selected within the sector is proportional to the size of the ethnic concentration, for example high concentration sector yielding high number of interviews. These addresses form the starting point of the focused enumeration procedure, with interviews obtained until the target is achieved.

In the current case, the Ethnibus survey was conducted in 53 distinct sampling points across London, UK. The postal districts were ordered and systematic random sampling was conducted. The process of systematic random sampling, applied to the ordered list, automatically enabled the distribution of the sampling points to be selected according to their relative ethnic population size, ensuring that participants represented ethnic minority groups, as well as white British members of the population. The aim of the sampling strategy was to ensure that a wide range of adults were included in the study (ethnic status). The Ethnibus responders represented a further 19 hospitals and 16 primary care centres.

Interviews were conducted by Ethnibus using trained, multilingual field workers. In the interviews, interviewers invited responders who had an outpatient appointment within the next 4 weeks to participate in the study. They asked them to complete the pre-visit self-administration questionnaire immediately before their clinic visit and the post-visit questionnaire immediately afterwards. The interviewers revisited them soon after the date of the clinic visit and collected the questionnaires.