Exploring the needs, concerns and behaviours of people with existing respiratory conditions in relation to the H1N1 'swine influenza' pandemic: a multicentre survey and qualitative study

Patients

Family members

Design

Cross-sectional questionnaire survey,38 involving postal and telephone elements.

Sites

Survey participants were recruited through distribution of questionnaires at seven hospital chest clinics (four district general hospitals, two university teaching hospitals and one specialist centre/tertiary referral centre), from British Lung Foundation (BLF) ‘Breathe Easy’ patient/carer support groups (n = 7 across the North West region) and via a newspaper advertisement (this approach, rather than recruiting through general practices, was adopted because of the extra demand on primary care services due to the pandemic and previous experience of the challenges of conducting research in primary care). The hospital sites all ran several chest clinics each week, with the specialist centre running the most clinics. The sites all had diverse patient populations, including asthma, COPD and ILD, and, at the specialist centre, other conditions, such as ABPA.

Sample

In each group, a sample of n = 171 would allow estimation of 95% confidence intervals for percentages with a margin of error of ± 7.5%. The aim was therefore to recruit a minimum n = 200 patients and n = 200 family members to allow for exclusion of incomplete data sets.

Methods

Study packs (including patient/family member information sheets, consent forms, questionnaires and pre-paid return envelopes) were distributed by clinic staff (typically receptionists or clinic assistants) to consecutive patients attending chest clinics at the seven study sites between October and December 2009 (commencement of data collection was not simultaneous, for operational reasons, at some sites, hence data collection periods ranged from 6 to 12 weeks). Patients self-completed the questionnaire either in clinic (returning it to a drop-off point or clinic staff) or at home, returning it by post. Patient packs contained a family member pack and instructions for the patient regarding distribution of this; family questionnaires were therefore typically returned by post.

For BLF ‘Breathe Easy’ groups, packs were distributed to members by the group Chair, either at monthly meetings or by post (with a covering letter from the Chair) between November 2009 and January 2010; all questionnaires were self-completed at home and returned by post.

The newspaper advertisement ran once, in the Manchester Evening News, a daily newspaper that has wide circulation across the North West of England. It is free within Greater Manchester and distributed at rail stations, etc. It has a readership of approximately 0.5 million, more than one-half of whom are 15–44 years old. It is commonly used to run health-research-related stories and to place study advertisements. It was the publication recommended by the University of Manchester’s media team as the best mapping on to the population of choice and being most likely to yield a good response. The advertisement ran on a Thursday (12 November 2009), which is a particularly good day, as it is when jobs are advertised, hence readership is at its highest. Our advertisement was prominently placed, on p. 2 of the newspaper, and was followed the next day by a short article in the paper regarding the study. It included a study-related telephone number and, after an eligibility check, those who responded were either mailed a study pack for self-completion and return by post or the survey was undertaken over the telephone, according to the participant’s preference. A copy of the advertisement is provided in Appendix 1; its wording was guided by our User Reference Group (members of the Central Manchester British Lung Foundation ‘Breathe Easy’ Group, who have worked with us for several years, advising on such aspects as priority topics for research; study design, especially acceptability and respondent burden; development of patient information sheets and lay summaries of findings), and was also to some extent dictated by requirements of the Research Ethics Committee that reviewed the study.

Instrument

Data were collected by means of patient and family member-specific questionnaires (see Appendices 2 and 3), developed de novo for the study. De novo development was necessary, as no appropriate tool already existed. Questionnaire development was guided by review of the literature24–29,39–42 (including relevant theory, such as the Health Belief Model42,43), pooling of expertise in the project team, and guidance from a User Reference Group (all people with chest problems and/or their family members); where appropriate, items from the Ipsos MORI poll16,17 were included/adapted. Topics that were addressed included: level of knowledge about swine flu; key information topics; sources of information; perceived usefulness of available information; concerns about swine flu; performance of recommended preventative measures; other behaviours (avoidance, health promotion, use of current medication); and anticipated use of health services. Questions regarding demographic and condition-related data were also included, with choice of items guided by previous work. 16,17,24–29

The questionnaires were piloted with the User Reference Group, and independently reviewed by a researcher with related experience and two respiratory health-care professionals, and were then revised in response to feedback from these. Piloting established face validity. Psychometric testing was not undertaken owing to the exploratory nature of this study and the rapid turnaround required.

Data analysis

Data were entered into spss v15.0 and analysed descriptively. Patient and family member responses were first compared descriptively. We originally intended to fit logistic regression models to assess the association between characteristics of participants and key outcome variables. The latter were selected to represent the three areas of interest in the study (knowledge/information needs; concerns and behaviours):

• perceived level of knowledge about swine flu (recoded for simplicity in two ways as ‘As much as I need or want to know’ – yes/no, and ‘As much as I need or want to know/Quite a lot but I’d like to know more’ – yes/no)

• concerns about swine flu (strongly agree or tend to agree with ‘Too much fuss is being made about the risk of swine flu ’ – yes/no)

• intentions about swine flu vaccination (very likely to have swine flu vaccination – yes/no).

The associations between these and characteristics of the participants were assessed first in bivariable analysis using Pearson’s chi-squared test for gender, married/living with a partner, ethnicity and respiratory diagnosis, the chi-squared test for trend for highest level of education, and the unpaired t-test for age. For patients, only one association turned out to be statistically significant for each of the three outcomes, and it was considered that there was sufficient association present to warrant a more in-depth multivariable analysis using logistic regression. For family members, two associations were statistically significant for perceived knowledge about swine flu and one for each of the other outcomes. The smaller sample size for family members and the limited degree of association both counted against further analysis using logistic regression.

Design

Dual moderator focus groups. 44,45

Sites

Focus groups were conducted at community-based meetings of BLF ‘Breathe Easy’ patient support groups across the North West; the aim was to undertake four to six groups. Selection of groups (from among the n = 25 in the region) was guided by the BLF’s regional development team (who helped us to identify well-established, well-attended groups and advised regarding the characteristics of these) and by the willingness of groups to participate (none was required to do so); none of the groups had been involved in the survey. Group Chairs were contacted to discuss possible participation of their group and to identify an appropriate meeting date to attend (or, if preferred, to set up a study-specific meeting). Groups were provided with information about the study and at which of their meetings it would take place, ahead of the focus group, in order to enable the group as a whole and individual members to decide regarding participation.

Sample

Focus groups typically involve 8–12 members per group. 44,45 Group sizes in the present study were determined by usual attendance at the BLF ‘Breathe Easy’ groups (typically n = 8–10 attendees, but up to n = 30 possible). The aim was to conduct 4–6 focus groups, with an expected sample size of 32–60 participants; this is typical of focus group studies and is at the higher end of recommended sample sizes for qualitative work. 46,47

Methods

A ‘focused conversation’ style of interviewing was adopted. 46,47 Discussion was focused using a topic guide (see Appendix 4). Each focus group was, with participants’ permission, audio recorded. A ‘dual-moderator’ focus group approach (whereby one moderator led discussion and another facilitated conduct of the group and took notes) was adopted. 44,45 Each focus group lasted approximately 1 hour and was conducted on one occasion.

Instrument

A topic guide was developed for the study. It addressed the main topics covered in the questionnaires (information needs, concerns and behaviours), the purpose of the focus groups being to explore these issues in greater depth. The guide was used to focus discussion, rather than being a compulsory list of topics to be addressed. Data collection was iterative, hence the topic guide was amended based on issues raised in/emerging from each focus group.

Data analysis

Each focus group was transcribed verbatim. Field notes for each focus group were typed up and appended to the relevant transcript. Framework analysis48 was used; this is a well-recognised qualitative analysis technique, which is gaining increasing popularity in health services research. It involves the following stages: (1) familiarisation; (2) identifying a thematic framework; (3) indexing; (4) charting; and (5) mapping and interpretation. Analysis occurred within and across transcripts. At least two team members independently coded each transcript and agreed the final coding used. Standard approaches to maintain rigour in qualitative research were adopted. 46,47,49

Design

One-to-one audio-recorded interviews with a purposively selected subsample of survey and focus group participants. 46,47

Sites

Interviews were conducted in participants’ homes, or another location of the participant’s choosing.

Sample

The aim was to recruit a purposive subsample46,47 of up to n = 20 individuals from amongst survey and focus group participants; these could be patient–family member dyads or singletons from each group. Purposive sampling criteria primarily related to responses to questionnaire items regarding knowledge, concerns and behaviours. Age, gender, respiratory condition, patient/family member status were also considered. The goal was to secure a range of perspectives.

Methods

A ‘focused conversation’ style of interviewing was adopted. 46,47 Discussion was focused using a topic guide and by the individual participant’s questionnaire responses or issues they raised in the focus group. Each interview was audio recorded, with the participant’s permission.

Instrument

The topic guide was as described in ‘focus groups’ above (see Appendix 4). Additional, individualised questions regarding responses to the questionnaire or issues raised in the focus group were asked.

Data analysis

Data analysis and steps to ensure rigour was as described in ‘focus groups’ above. 46–49

Information needs and topics

Table 4 presents data regarding perceived level of knowledge about swine flu.

Most participants did not identify particular topics on which they would have liked additional information. Among those who did, the most common for patients were how swine flu would affect people with chest problems (n = 27), how serious swine flu is for people with an underlying chest problem (n = 16) and how to recognise swine flu symptoms (n = 14), and, for family members, the difference between swine flu and other types of flu (n = 10) and how to recognise swine flu symptoms (n = 8).

Participants’ views on the importance of a range of information topics are presented in Appendix 5, Tables 18 and 19. All topics were rated as ‘very important’ by 50% or more of participants. Patient and family member responses were broadly comparable. The topic most commonly selected as ‘very important’ by both patients and family members was ‘How “swine flu” might affect chest problems’ (patients n = 202, 81.5%; family members n = 86, 86.0%). Other topics relating to the effect of swine flu on people with chest problems and recognition of swine flu symptoms also had high percentages rating them as ‘very important’. The topic least often rated as ‘very important’ by patients was ‘Whether the families of people with chest problems are more likely to catch swine flu than others’ (n = 128, 52.7% compared with family members n = 56, 56.6%) and by family members was ‘How likely it is that you will catch swine flu’ (n = 50, 50.0% compared with patients n = 158, 64.0%).

Information sources

The majority of both patients (n = 187, 73.9%) and family members (n = 78, 77.2%) had already received information about swine flu. Detailed data regarding sources of information are presented in Appendix 5, Table 20 (note: participants could indicate more than one source); patients’ and family members’ views on the importance of information sources were generally very similar. The most common source for both patients and family members was ‘leaflet delivered to my home’ (patients n = 125, 49.4%; family members n = 55, 54.5%), followed by ‘television’ (patients n = 116, 45.8%; family members n = 44, 43.6%). Other common sources were ‘poster displayed at GP surgery’ (patients n = 109, 43.1%; family members n = 37, 36.6%) and ‘newspaper’ (patients n = 91, 36.0%; family members n = 36, 35.6%).

General practitioners (GPs) were the health professionals most often used as an information source (patients n = 75, 29.6%; family members n = 21, 20.8%). Lay advice from family members and relatives was used by sizeable percentages of both samples, and, indeed, was more commonly used than the GP by family members (patients n = 54, 21.3%; family members n = 23, 22.8%) Unsurprisingly, more patients than family members cited ‘hospital consultant/specialist doctor’ as an information source (patients n = 48, 19.0%; family members n = 10, 9.9%). Interestingly, very few patients or family members had used a community pharmacist as a source of information (patients n = 12, 4.7%; family members n = 4, 4.0%).

Modest use as an information source was made of resources such as the NPFS, the ‘NHS Choices’ website and NHS Direct (see Appendix 5, Table 20), although a little more use was made of the government’s ‘pandemic flu’ website – www.direct.gov.uk/pandemicflu (patients n = 26, 10.3%; family members n = 15, 14.9%). None of those who selected ‘other’ (neither patients nor family members) specified what source this was.

Detailed data regarding the perceived usefulness of a range of information sources for people with respiratory problems and their families are presented in Appendix 5, Tables 21 and 22 (figures in italics indicate whether individuals would personally have utilised a particular information source). Views on usefulness of information sources were broadly comparable in patients and family members, as was reported likelihood of personally using a particular information source. Generally, fewer people (both patients and family members) indicated that they would personally ‘definitely’ have used an information source than rated it as ‘very important’ for people with respiratory problems and their families, although the differences were often small.

The two information sources most commonly identified as ‘very useful’ by both patients and family members were doctors, i.e. GPs (patients n = 188, 75.2%; family members n = 78, 77.2%) and hospital consultants (patients n = 190, 76.9%, n = 73, 72.3%). Despite being the most common source of information, only 79 patients (31.2%) and 35 family members (34.7%) identified leaflets as a ‘very useful’ information source. Similarly for television, only 80 patients (32.5%) thought it ‘very useful’ [and only n = 49 (21.0%) would personally ‘definitely’ have used it], whereas among family members only n = 31 (30.7%) considered television ‘very useful’ and only n = 17 (18.3%) would ‘definitely’ have used it personally. The NPFS was considered ‘very useful’ as an information source by 124 patients (51.0%) and 55 family members (55.0%), whereas the government’s pandemic flu website was identified as a ‘very useful’ information source by only 79 patients (33.2%), but by a higher percentage of family members (n = 45, 45.5%).

Knowledge

To explore knowledge regarding swine flu, participants were asked a series of ‘true/false’ questions; these data are presented in Appendix 5, Tables 23 and 24. In most instances, the majority of both patients and family members could correctly identify which items were ‘true’ and ‘false’. In line with official government information, most patients and family members identified statements regarding the value of hand-washing and use of antibacterial gels in preventing the spread of swine flu as ‘true’ (hand-washing – patients n = 240, 96.8%, family members N = 96, 99.0%; antibacterial gels – patients n = 177, 72.2%, family members n = 68, 70.1%).

There was some confusion about who was most at risk of developing swine flu. Most patients (n = 153, 63.0%) and family members (n = 67, 69.1%) incorrectly identified people with respiratory problems as being more likely than others to catch swine flu. However, both groups correctly identified these patients’ greater likelihood of developing complications following contraction of swine flu. Most patients (n = 171, 70.7%) and family members (n = 64, 67.4%) incorrectly identified the very young as being most at risk of developing swine flu. A sizeable percentage of both patients (96, 39.8%) and, even more so, family members (n = 44, 45.8%) also incorrectly identified older people as having the greatest likelihood of developing swine flu.

There was also some confusion regarding antiviral medications, with 138 patients (56.3%) and 48 family members (50.5%) incorrectly identifying oseltamivir as a vaccine for swine flu, rather than as an antiviral medication. Similarly, 138 patients (59.0%) and 49 family members (51.6%) thought that family members of a person with swine flu would routinely be given antiviral medication, which was contrary to Health Protection Agency (HPA) guidance52 and official government information for the public. 53

Ability to identify swine flu symptoms was also explored (see Appendix 5, Tables 25 and 26); this is difficult, as there are few (arguably no) distinct symptoms of swine flu. 54 Official guidance to the public at the NHS Choice website55 indicated that swine flu should be suspected in the presence of fever or high temperature (> 38°C/100.4°F) accompanied by one or more of the following: unusual tiredness, headache, runny nose, sore throat, shortness of breath or cough, loss of appetite, aching muscles, and diarrhoea or vomiting. The majority of both patients and family members identified most of these symptoms as possibly being due to swine flu. However, only 99 (44.6%) of patients identified ‘diarrhoea or stomach upset’ as possibly being associated with swine flu (although n = 62, 66.0% of family members did so) and only 43 (47.8%) of family members associated ‘loss of appetite’ with swine flu (although n = 135, 60.5% of patients did so). Some symptoms in the list had not been indicated in official literature as being suggestive of swine flu (e.g. rash, sudden inability to move limbs) and most patients and family members identified these as not being suggestive of swine flu (see Appendix 5, Tables 25 and 26).

Appropriateness of Information

Table 5 presents data regarding satisfaction with the amount of information received and Table 6 presents participants’ views on whether the information was helpful or not. Few in either group who thought that information was unhelpful gave reasons why, but, among those who did, typical reasons were that there was insufficient information (n = 29) and that it was conflicting (n = 12).

As Table 7 illustrates, slightly over one-half of both patients and family members believed that people with chest problems and their families need different information from others regarding swine flu. Few of either group specified exactly how this should differ, with the most common response across the two groups relating to how swine flu would affect the chest problem (n = 28).

Impact on daily living activities

Tables 27 and 28 in Appendix 5 present detailed data regarding reported impact of concerns about swine flu on daily living activities, including both health-promoting activities (e.g. increasing exercise, reducing smoking) and activity limitations (e.g. reducing social activities, limiting travel); family members were also asked if their relative with a chest problem had altered behaviour – these data are presented in the final column. Neither patients nor family members reported high levels of alteration of daily activities, and levels were generally even lower for family members than for patients. The most commonly reported behaviour changes in patients were avoiding crowded places (n = 55, 21.7%), trying to get more exercise (n = 53, 20.9%) and being more careful about taking regular medications (n = 52, 20.6%). In family members, the only behaviour changes that more than 10% of the sample indicated having made were avoiding crowded places (n = 11, 10.9%) and trying to get more exercise (n = 14, 13.9%).

Sizeable percentages of both patients and family members indicated that because of worries about swine flu they were more anxious about the patient’s chest problem (patients n = 87, 34.4%; family members n = 39, 38.6%), more aware of it than usual (patients n = 81, 32.0%; family members n = 38, 37.6%) and, especially among family members, constantly on the alert for changes in the patient’s respiratory condition (patients n = 89, 35.2%; family members n = 44, 43.6%). One-quarter of patients also indicated that they were more self-conscious about their chest problem (n = 64, 25.3%); family members much less commonly reported feeling self-conscious about their relative’s respiratory condition (n = 13, 12.9%).

It is important to note that these are self-reported, rather than observed, behaviour changes, and it is also possible that, although asked to consider behaviour specifically with regard to swine flu, some participants may have responded in more general terms.

Adoption of preventative measures

Self-reported levels of adoption of preventative measures are detailed in Tables 12 and 13.

Vaccination intentions

More than three-quarters of patients (n = 197, 77.8%) and almost two-thirds of family members (n = 63, 62.4%) reported having had flu once or more in the past; of these, 140 patients (55.3%) and 32 family members (31.7%) had done so more than once. Patients had more recent experience of flu, with n = 107 (42.3%) having had a flu bout within the past 5 years, the comparable figure for family members being n = 27 (26.8%).

Previous levels of regular uptake and current intentions regarding the annual seasonal influenza vaccination are provided in Appendix 5, Tables 28 and 29. Tables 14 and 15 present data on intentions and views regarding swine flu vaccination.

Help-seeking

Only 98 patients (38.7%) and 39 family members (38.6%) reported having chosen someone to act as a ‘swine flu friend/buddy’. Of those who had not, 58 patients (22.9%) and 29 family members (28.7%) did not think they needed one, while 74 patients (29.2%) and 26 family members (25.7%) did not know what one was. Fifteen patients (5.9%) and four family members (4.0%) did not know whether they had an identified ‘flu friend’ or not. Eight patients (3.2%) and three family members (3.0%) gave no response.

Tables 16 and 17 present data regarding initial help-seeking intentions (‘what would you do first?’) by patients’ family members if swine flu was suspected (Table 16) and, in the presence of swine flu, if complications were suspected (Table 17); family members were also asked to indicate what they would have advised their relative with a chest problem to do – these data are presented in the final column of each table. Note that these data represent behavioural intentions, not observed behaviour.

Participants were also asked to indicate help-seeking behaviour in relation to a list of symptoms, some of which were ‘typical’ swine flu symptoms (e.g. sore throat, aching muscles), others representing potential complications of swine flu (e.g. change of sputum colour, drowsiness/confusion) or being a ‘red flag’ symptom (e.g. haemoptysis) – these data can be found in Appendix 5, Tables 30 and 31. Family members were additionally asked about help-seeking for their relative with a chest problem in relation to these (Appendix 5, Table 22). Phrasing of respiratory symptoms was chosen to minimise confusion with ‘usual’ respiratory symptoms. Again, it should be noted that these were self-reported/hypothetical, rather than observed, behaviours.

The vast majority of patients and family members reported that they would seek help in the presence of such symptoms as tachypnoea/dyspnoea (patients n = 211, 90.2%; family members for self n = 82, 86.3%; family members for relative with chest problems n = 89, 94.7%) and haemoptysis (patients n = 211, 90.2%; family members for self n = 82, 86.3%; family members for relative with chest problems n = 89, 94.7%). Interestingly, the percentage of patients who would have sought help for aching muscles (n = 121, 53.1%) and a sore throat (n = 115, 50.4%) were similar to the percentage who would have sought help for the more clinically significant symptom of drowsiness/confusion (n = 135, 59.7%). This was not the case for family members, either on their own or on behalf of their relative with a chest problem.

For all symptoms, family members reported being more likely to help-seek on behalf of their relative with a chest problem than on their own behalf – although the difference was minimal for haemoptysis.

Antiviral medication

Most patients and family members would have preferred to get oseltamivir on prescription (patients n = 214, 84.6%; family members n = 73, 72.3%), although around one in 10 patients (n = 31, 12.3%) and one-fifth of family members (n = 21, 20.8) would have welcomed ‘over-the-counter’ availability. Very few would have wanted to acquire oseltamivir without having to contact a health professional, for example via the internet or from a health food shop (patients n = 3, 1.2%; family members n = 2, 2.0%). One patient (0.4%) and one family member (1.0%) selected ‘other’, but did not specify what this would have been, while two family members (2.0%; no patients) chose ‘don’t know’. Four patients (1.6%) and three family members (3.0%) gave no response.

Self-reported behaviour with respect to obtaining a supply of oseltamivir, if needed, are presented in Appendix 5, Table 33; family members were also asked to indicate what they would have advised their relative with a chest problem to do – these data are presented in the final column. By far the most common action for patients and family members (on their own and their relative’s behalf) would have been to telephone their GP (patients n = 152, 60.1%; family members on own behalf n = 58, 57.4%; family members for relative with a chest problem n = 64, 63.4%). Other commonly selected options were calling a health helpline (patients n = 62, 24.5%; family members on own behalf n = 23, 22.8%; family members for relative with a chest problem n = 24, 23.8%) and calling the NPFS (patients n = 62, 24.5%; family members on own behalf n = 29, 28.7%; family members for relative with a chest problem n = 31, 31.7%) and, for patients only, going to the GP’s surgery (n = 60, 23.7%). Only 12 patients (4.7%) and one family member (1.0% on own behalf; none on relative’s behalf) reported not knowing how to obtain a supply of oseltamivir if needed.

Adequacy of information

The majority of participants considered the volume of information available in relation to swine flu to be sufficient and had accessed information from a range of sources, both formal and informal (Box 1). The government was, on the whole, considered to have done a good job regarding information provision (Box 1).

Some participants felt that there was an over-reliance on internet-based information:

Some people haven’t got a computer, there should have been more on the TV that told people what was going to happen and how they could have it, the symptoms … if there’d been more information on the TV it might have stopped people from panicking. [The internet] – was better for me because I could read what the symptoms were …

[FG3(7)]

A small number felt that the information available was insufficient, their views being typified by this participant:

Only just what I’ve seen on the TV, and that isn’t much information really … just basically that you can catch it off other people, make sure you wash your hands … the government ain’t really doing that much if I don’t know anything about it! … I watch a lot of TV and if I don’t know it, there’s going to be an awful lot of people out there don’t do as well.

[Int2P]

However, what became evident during interviews was that even those who reported having received little information did seem aware of the key messages included in formal information sources, such as the importance of hand hygiene, protecting others when sneezing, and not placing others at risk of infection if symptomatic.

It was also apparent that there were still outstanding information needs, even among those who felt reasonably well informed. One of the main areas participants would have liked to know more about was how to distinguish between swine flu and other forms of flu or symptoms relating to their respiratory condition (Box 2). Other areas in which people felt in particular need of information related to how swine flu was likely to impact on them, given that they had an underlying chest condition, and the suitability of the vaccine for them (Box 2).

There were also some misunderstandings and misconceptions revealed, as this data extract from one of the focus groups illustrates:

I’m under the impression that all the swine flu injection is for is to give you one less day of the symptoms if you should get it.

Right, so it’s specifically information about what benefits there are from the injection itself.

Yeah, or COPD.

I thought the injection was for prevention rather than cure, the same as the flu injection is …

It’s what I say about who do you believe you see?

[FG1]

A sizeable number of participants did believe that specific information should have been targeted towards people with an underlying chest condition (or indeed any other long-term health condition), as the general information was not considered to indicate how serious swine flu could be in individuals already predisposed to infections (Box 3).

Credibility of information

Some sources of information were viewed as more credible than others, with health-care professionals and formal sources (such as government information) being viewed to be generally of a better quality:

I do take more notice if it comes by post, if it came from the doctor’s or it came from, you know, anything with the NHS, I would take more notice of that than I would of the television.

[Int12F]

They should have an official government site or leaflet with the proper information rather than [media].

[FG3(9)]

The internet, that’s another thing that might have had damaging side effects … if you don’t check whose site you’re reading from it can be exceedingly misleading.

[Int20P]

However, some participants indicated that even ‘official’ sources might lack credibility:

I mean some people still don’t believe the official data ‘cos they think the government are just lying basically. One of my own brothers thinks that they’re just making it up. And I said well, you know, if they did they’re going to kill a lot of people and if nothing else the compensation claims would be horrendous, so, you know, it’s, unlikely, but I think it is a problem what people get told.

[Int10F]

Many participants referred to the unreliability of information from media sources, in particular given the media focus on promoting viewing or sales figures, as opposed to disseminating balanced advice:

It’s a bit of bunkum a lot of what they say on there [TV] … the trouble with the television is they only give you a certain aspect of it, what they want to tell you … a lot of the things that come through on the news, news bulletins aren’t strictly true are they?

[Int4P]

Well if the government put it into the newspaper it should have a government stamp on, and that’s the only bit they can put in to the newspaper, is what the government’s told [them, not] … we’ll put that in, that’ll make it more exciting … an official stamp, so that I can say, well that’s from the government … it’s not from the Express, it’s not from the Mirror making their own bits on … and I think that would be the best idea.

[FG3(8)]

Many participants believed that there had been a considerable amount of hype in relation to swine flu, most of it emanating from the media. This was felt to have had led to a considerable amount of anxiety, and even panic:

Yeah, at the beginning we thought everybody would die, especially us like with a bad chest. But … I think it made everybody panic … there was a lot of hysteria … I think it was just too much publicity.

[Int9P]

… the television’s the problem isn’t it really. Where years ago we would just hear about something in Mexico, sort of like in the early 50s where only a few people had TVs they would have just been saying, oh there’s some kind of epidemic up in Mexico, nobody would have bothered about it. But now the TV brings it in to your front room, maybe, it’s sensationalism isn’t it really.

[Int18F]

Some participants felt that a certain amount of hype was perhaps necessary in order to prevent people from being too complacent about swine flu:

I feel they’ve a lot of hype with a lot of things, not just the swine flu, and particularly the media, they like to blow things up, don’t they? They like to scare people really. On the other hand I suppose scaring people is only one way to get them to move.

[Int16P]

Others, however, considered that ‘overhyping’, including by the government, was leading to cynicism and blunting the impact of messages:

Well, this is one of the problems with this, the civil service get up, things get overhyped, it seems to me that they, this present government doctor over exaggerates everything. I mean … this pandemic has been going to arrive here for the last how many months now, you know? And you get to the point where you’re thinking they’re just winding us up.

[Int4P]

I think at first people watch it and at first it’s a shock thing, but after a while it’s just an advert …

[Int18F]

This perception was reinforced by the fact that the potential impact of swine flu, presented at the outset of the pandemic, did not appear to have materialised in the months that followed. Some felt, however, that ‘downplaying’ of swine flu, particularly by the media, was premature:

But with this new thing I find this far more threatening that the media are getting now because they’re inferring that it’s not as serious as we thought. Which is absolute rubbish, people have died, some people have been left permanently damaged and I think it’s rubbish, and they’re giving the impression that it’s all gone away which it may not have done, I think they’re a little premature.

[Int 20P]

Another perceived negative impact of media hype was the fact that key messages were unable to get through as they were hidden amongst the sheer volume of information that was presented to people, a view typified by this data extract:

Well basically there’s tons of information I would say, but unfortunately the newspapers tend to exaggerate it all I think. And what you find you’re struggling to do is to pick through what actually you need be watching for, and what you don’t … so there’s kind of a manic picture of this, people are frightened and I think there are just too many sources of information, that’s the impression I get.

[Int15F]

Inconsistency of information was also identified as an issue by some participants:

The most useful was the television to be honest … ‘cos they more or less spelt it out, the only thing was that it kept changing week by week, different criteria, one minute it was specific groups, then it was another group.

[Int1P]

Although many participants had reservations around how the swine flu pandemic had been presented in the media, they did not consider the pandemic as a whole to have been overhyped by the government, particularly given the potential impact of swine flu. In many ways the government was viewed as being in a ‘no-win’ situation, whichever course of action they had taken, as this data extract highlights:

I don’t think the government can basically do anything to get it right basically, because they’d just be wasting more money, you didn’t need to have all that printing [of new leaflets] and yet if it goes really wrong and nobody takes any notice and say hey, it was only mild, and then they all get it and lots more die, then they’ll say, the government should have warned us. So really, like, they’re between the devil and the deep blue sea.

[Int20P]

Types of concern

A concern commonly expressed by both patients and family members was how they would know if they actually had swine flu:

[Re. leaflet] … it just had swine flu on it, like information, like the symptoms, how to recognise it, which is very much like the normal flu what you get. That makes you panic a bit more, thinking god, if you had normal flu, would you have swine flu, or would it just be the normal flu? … I mean I know they say you get a really high temperature, but sometimes you get a high temperature with a normal cold, so it makes it complicated again, so you’re thinking, where do I stand?

[Int3P]

I think that’s the main concern of not knowing more than anything. You think to yourself, if you started with a sore throat and aching, that’s normal flu. Sore throat, runny nose, you know, aching bones, I mean that’s all the normal symptoms of swine flu, so I suppose then if you’ve got three of them, they say two of them, but surely to god two of them is not swine flu. I mean we could have had it already and we don’t know we’ve had it. And this is the thing, you’re still worrying about it, but you could have had it if you’ve had flu.

[Int11F]

Another common area of concern related to the swine flu vaccine (Box 4), even amongst individuals who normally had the annual seasonal influenza vaccine. Safety was viewed as an issue given that it was a new vaccine. Others were concerned that the vaccination could impact on their underlying condition and/or interact with the medications required for their respiratory problem.

One participant was especially anxious about the vaccine and the interview was dominated by discussion of this topic. This participant’s fear of the vaccine was greater than that of swine flu, even though she had direct experience, through her daughter, of how ill swine flu could cause someone to become:

I was a bit concerned when my daughter had it [swine flu], because she was poorly, she was poorly with it … but she did get the Tamiflu and yet, even though I saw her like she was, I still at that time didn’t think, ‘Oh well, you should have that [vaccine]’.

[Int7P]

Conversely, fear of swine flu itself had led some participants to decide to have the vaccine, or to encourage family members to do so, as a means of alleviating anxiety:

I was a bit concerned over that because they were saying it’s not been checked out enough … and then anyway I just ended up having it … because I don’t want to die having swine flu, I don’t want to be poorly.

[Int3P]

I think once he’s had it I can relax a bit … psychologically it will do him better because of the complications he’s got.

[Int11F]

Preventative measures

The general lack of anxiety amongst individuals was reflected in the fact that most reported little, if any, change in their behaviour as a result of swine flu. However, it was apparent in most interviews that behaviours recommended by official sources had been taken up, hand hygiene in particular, as the following data extracts illustrate:

I thought, you’ve just got to carry on with your life, you know what I mean, I wasn’t one of those that sat down and worried myself to death about it. If you’re going to get something you get it … I just took extra care. I always carried one of these hand things around with me, always, I still do now. So apart from that I just steer clear of anybody that’s sneezing or something, you know what I mean, things like that. You can’t avoid it, you’ve got to carry on with your life. Well that’s my philosophy anyway.

[Int16P]

No, it’s not altered me at all, no. I’ve just carried on normally … yes, I’ve started washing my hands regular, I have done that … But as far as being in crowds, no, that hasn’t bothered me.

[Int14P]

While participants on the whole had not isolated themselves, some were more conscious when in public places or around people who might have been symptomatic:

I have uh cut down going out, because, I mean I live on my own as well, I’ve nobody to look after me, and I’ve just been trying to keep myself protected without shutting myself off, for just thinking a little bit, should I go there.

[FG1(7)]

I won’t go if there’s a lot of people – if anyone’s say got a cold, it could be a general cold or anything like that: ‘don’t come into my house’ … and I feel a bit rude by saying it, but I’m just scared … I don’t know if it’s being paranoid or just being cautious.

[Int3P]

Help-seeking

When asked, most participants indicated that they would telephone their GP, an NHS helpline or their respiratory consultant for advice if they felt that they had symptoms which could indicate swine flu:

I would have phoned the doctor’s and asked their advice, but I know there’s advice centres, isn’t there? And I would have phoned them. And, ‘cos I realise that going to surgeries, going to hospitals, is just taking it there, so I wouldn’t, the one thing I wouldn’t have done was have gone there.

[Int18F]

Well, straight, I’d phone the doctor straight away and probably be advised by them. If for any reason I suppose I couldn’t get through to the doctor I’d probably phone the helpline, the NHS [Direct] helpline … and see what advice they gave me.

[Int12F]

However, other views differentiated between appropriate help-seeking for a person with a long-term condition and the general public (Box 5).

Amongst others, however, there was some confusion about what was appropriate action for people with a respiratory condition: I know that they say you can’t [go to doctors], but there’s a difference between – and this is where I think the problem is, they weren’t told what you did if you got really, really poorly with it … [Son, has asthma and was ill with confirmed swine flu. He said ‘I can’t go’, and I said ‘Well I’m sorry but I’m taking you in’, [daughter in law] said,’ oh you can’t take him in because they won’t let you in’. I said ‘look [name] if I don’t do something he’ll be dead tomorrow’.

[Int20P]

There was considerable reticence about using hospital services, and some confusion about when or whether this would have been appropriate, typified by this data extract:

I know you could take them to hospital, but I don’t know whether it’s always a good thing. Unless, I mean it’s different if you’ve got complications of course, I think you’d have to, you know.

[Int12F]

Those who had sought help had typically had positive experiences:

I thought I was starting with it once, and I did phone the swine flu line up. And they told me to go back to [NHS] Direct, to phone them up, because they felt I needed to talk to somebody with more experience, because of the existing conditions I had. So as soon as I mentioned that, they passed it on. And then from there they said I had to phone my doctor up because of the underlying condition I had, which I did. And the doctor come out to me and they also give you a prescription for the Tamiflu … But that was done for me straight away … the locum was out within an hour, so it was good.

[FG1(7)]

Vaccination uptake

A variety of factors appeared to influence whether participants were likely to have the swine flu vaccine or not. Perception of risk from swine flu was one such factor:

She [my wife] doesn’t, doesn’t seem to want to go … she’s always had the 12 months’ influenza jab … I think it’s a good idea to have it if you’re offered it. But she seems to think that maybe it’s not as bad an epidemic as it’s been built up to be in the media and therefore it’s probably no greater risk than normal 12 monthly, you know, the annual winter flu that anybody can get. So I think it’s on the basis of, ‘I probably won’t get it’, kind of thing.

[Int19F]

No. The, the surgery asked me if, if I was interested in getting that swine flu uh … And I said what for? I said I’ve never had a cold in all these years, I’ve never – I mean I get my usual flu jab … [for] ten years I’ve been getting [that].

[Int5P]

Others felt that it was better to rely on the body’s natural defences to fight off infections:

I don’t worry about medical issues, I tend to find they take care of themselves as long as you look after yourself I think sometimes you’re better off letting your body … do its work.

[Int13P]

Information-giving about the vaccine was felt to be lacking, most indicating that they had simply been informed that they were eligible to have the vaccine, rather than being given more detailed information to help them decide on the appropriateness of the vaccine for them:

I said, what for? I mean I’ve had my flu jab like, I said isn’t that good [enough]. [They said], you’re not forced to do it. So I said if it’s optional, no thanks … That was on the phone and that was it. No more.

[Int5P]

Some who had already received the vaccine also indicated that they had received little in the way of information at the time of vaccination, as clinics specifically set up for the vaccination programme were very busy:

Basically it was just like, go in, get the jab, and then out again. No explanations or anything … because everybody come into the surgery at once to get the swine flu and we were like queuing up and it was just jab and out.

[Int2P]

The influence of health-care professionals on the uptake of the vaccine also became apparent during some of the interviews, although participants were not asked directly about this. Some had been encouraged, either by their hospital specialist or their GP to have the vaccine, given that they had an underlying condition:

Well I was just called up for it from … the doctor’s. They asked us if we wanted to have it … I’d already had recommended that we did [from specialist]. Well I did. I was vulnerable. And I was in one of the first batches to go out … You’re in and out. You only see the nurses for that anyway.

[Int4P]

… in my condition, he [doctor] advises that I should, but he’s not saying you’ve definitely got to, I think it’s a random choice, you either do it or you don’t. The flu, I mean, and warfarin, I mean and things like that, I’ve got to do it … but he said I would advise that you did.

[Int7P]

A small number of participants had felt slightly pressurised into having the vaccine, even although they had some reservations about taking it:

… so I said to her, do we have to come? Well she said, well – in other words yeah … my husband’s been going for years, but I wouldn’t go … Because we had an auntie what died about a week after she’d had one, and I knew somebody else who’d died about a month after having one, ‘cos you get, with the flu injection you get like a bit of flu don’t you? … they more or less said we had to have it.

[Int9P]

… even the receptionist pushed me to have it and I said no, I’ll have to wait till the doctor decides … so the receptionists are actually pushing you to come in and have your injection, and that’s without medical, you know, from the doctor [with] knowledge of what you’re on. So any side effects might be more refer to you because you’ve got a chest problem. They’re just thinking because I’ve got a chest problem you should have it.

[FG3(R8)]

The influence of health-care professionals was also apparent in other ways, their actions having an impact, either positive or negative, on the perceived safety of the vaccine:

I think a lot of it, you know, when you read it in the press … I think reports in the press when they say, only 25% of national health workers, the nurses, what have you, have agreed to have it. That then makes me think they know something I don’t or – so to me it’s very negative the way it’s been put into the press, very negative.

But surely I think the ordinary flu jab was very low in the take up from NHS workers anyway, so there’s nothing very different in that is there really? Maybe they’re anti-injections.

[FG2]

I don’t think they know enough about it, and obviously my GP’s in the clinic, they’ve all had it, and obviously they must have done their research into it else they wouldn’t have done, and all the receptionists have had it, and I thought, well he wouldn’t – you know, going through the doctors, ‘cos there’s seven, well he wouldn’t have had it, you know, things like that. And I felt a bit easier after talking to him, but I’m still not sure. Can you get it twice?

[Int7P]

Although by the time of data collection the majority of participants had been invited to have the vaccine by their general practice, some felt that there had been inappropriate delay in the vaccine becoming available for them or their family member:

[My sister’s not had it as] there’s not been enough vaccines coming through, they’ve got 500 and the GP has three and a half thousand at risk patients … but of course they’ve got to fit clinics in, you know, everybody’s overworked with the swine – you know, all the surgeries, and they just can’t get the clinics … she wouldn’t have done it if I hadn’t told her to.

[Int 10F]

I’m 66, and [my GP] said, ‘sorry, you don’t qualify for it, it’s only up to 65, and we’re not giving it to other people at the moment, regardless of the, the risk group they’re in,’ and if I phone him again in January to see if you may get it. Now to me that is a disgrace, it’s also going against what the government has said, that it must be for people over six months who are not at the risk group you should be working off [sic], and [locality] has put a limit on them being 65. And this is scary.

[FG1(R7)]

Oseltamivir use

A number of interviewees made reference to oseltamivir when discussing help-seeking. There appeared, amongst the sample, to be reservations about both the efficacy and safety of this product.

I mean I’ve heard there’s a lot of side effects with them and you can end up poorly with the Tamiflu tablets and I didn’t fancy like taking ’em if I didn’t have it, if it wasn’t necessary.

[Int3P]

No we accepted that she needs to take protection, so it’s silly not to take [the vaccine] – where the Tamiflu thing is I think a totally different thing. I think the injection’s more to help you build up the antibodies and so on, whereas the Tamiflu stuff is more you’ve got it and take this and hopefully it will sort your problems out.

[Int15F]

I don’t even know if Tamiflu works.

[Int18F]

The media appeared to have influenced some participants’ views, whereas others were influenced by concerns about interplay with their existing respiratory condition and treatment:

[Newspaper suggested] it could make you really ill for a few days. Now whether that was a deterrent just to stop people getting it just for the sake of it I don’t know. But nevertheless, when it came to me, I mean I was quite concerned about it, because I’ve got complex needs as you know.

[Int20P]

I’ve sort of heard conflicting information about them, so I’m not sure that I would necessarily dash off to get a dose of Tamiflu. Because I mean the thing is it all comes back to this one point that I’ve made, that really I’m not quite sure what the effect would be with my own particular problem … there is some doubt [from the press] as to whether it is effective and also whether in fact, whether it had any bad side effects.

[Int17P]

At the other extreme, some interviewees made reference to people having obtained oseltamivir as a precautionary measure; this was typically viewed as inappropriate:

And I know people were stupid, I remember I heard on the radio about a guy whose wife and his daughter, they thought they had the swine flu, but he didn’t seem to have the symptoms yet, but he lied over the telephone knowing what the symptoms were. So … that the minute he got it he would start taking the medication, and I think that’s what a lot of people have done. And I think people are just – selfishness is just – something like this, a pandemic, brings out the worse [sic] in people. So my view is, I’m glad I didn’t take it earlier, than panic. If I did get symptoms now, yeah, I’d take it.

[Int15F]

There was also some confusion about eligibility for and appropriate use of oseltamivir:

I must admit I’ve been a bit puzzled by that because many people were treated with Tamiflu when it all started to explode in the first quarter of this year and then we were told after you took it that if you got hit by the second wave you can’t take the Tamiflu again. That’s really bad.

[Int15F]

People with chest problems and swine flu

Identification Number: _____________________________

Date: _____________________________

1. 1. How much do you know about swine flu? (Please circle one answer.)

   1. None of the things I need or want to know

   2. A bit, but I’d like to know more

   3. Quite a lot, but I’d still like to know more

   4. As much as I need or want to know

2. 2. What, if anything, is the ‘number one’ thing you would like to know about swine flu? (If nothing, please state.)

   _____________________________________________________________________________________

3. 3a. How important do you think it is for people who have a chest problem to receive information about each of the following topics? (Please circle one number for each item.)

4. 3b. Are there any important items missing from the above list? If so, what are they?

   _____________________________________________________________________________________

5. 4. How useful do you think each of the following is/could be as a source of information about swine flu for people with chest problems? (Please circle one number for each item.)

6. 5. Now please tell us which of these items you personally would use as a source of information about swine flu. (Please indicate by circling one number for each item. )

7. 6a. Have you already had any information about swine flu? (Please circle one answer.)

   1. – Yes

   2. – No

8. 6b. If YES, where from? (Please circle all that apply. )

   1. Leaflet delivered to my home

   2. Leaflet picked up somewhere else

   3. Poster displayed at work

   4. Poster displayed at GP surgery

   5. Poster displayed at hospital

   6. Internet – NHS Choices (www.nhs.uk)

   7. Internet – government website (www.direct.gov.uk/pandemicflu)

   8. Internet – health-care organisation or health-care charity website

   9. Internet – other website

   10. NHS Direct (phone line)

   11. The Swine Flu Information Line (phone line, recorded information)

   12. Other telephone helpline (e.g. health-care charity)

   13. Friends or relatives

   14. General practitioner (GP)

   15. Practice nurse (GP’s nurse)

   16. Receptionist at GP’s surgery

   17. Community pharmacist (chemist)

   18. Specialist nurse (hospital or community)

   19. District nurse

   20. Health visitor

   21. Hospital consultant/specialist doctor

   22. Other hospital doctor

   23. Hospital doctor’s secretary or clinic receptionist

   24. Nurses on hospital wards or at clinics

   25. Other health professional (e.g. physiotherapist, occupational therapist)

   26. Minor injuries clinic or walk-in centre

   27. A&E (casualty) department

   28. National Pandemic Flu Service (website and phone line)

   29. The HPA

   30. Television

   31. Radio

   32. Newspaper

   33. Magazine

   34. Medical book/journal

   35. Patient self-help or support group

   36. Other (please state)

       _____________________________________________________________________________________

9. 7a. How satisfied or dissatisfied are you with the amount of information available to you on swine flu, from any source? (Please circle one answer.)

   1. Very satisfied

   2. Fairly satisfied

   3. Neither satisfied nor dissatisfied

   4. Fairly dissatisfied

   5. Very dissatisfied

   6. Don’t know

10. 7b. If DISSATISFIED, why is that?

    _____________________________________________________________________________________

11. 8a. Do you think that the currently available information about swine flu is helpful, or not? (Please circle one answer.)

    1. Yes

    2. No

    3. Don’t know

12. 8b. If NO, why not?

    _____________________________________________________________________________________

13. 9a. Do people with chest problems need different information about swine flu from other people, or not? (Please circle one answer.)

    1. Yes

    2. No

    3. Don’t know

14. 9b. If YES, what is/should be different about the information provided?

    _____________________________________________________________________________________

15. 10. Swine flu is a form of influenza that originated in pigs, but can be caught by, and spread among, people. How worried, if at all, would you say you are now about the possibility of personally catching swine flu? (Please circle one answer.)

    1. Very worried

    2. Fairly worried

    3. Not very worried

    4. Not at all worried

    5. Don’t know

16. 11. Because of your chest problem, do you think you are more likely than other people to catch swine flu, or not? (Please circle one answer.)

    1. Very likely

    2. Fairly likely

    3. Not very likely

    4. Not at all likely

    5. Don’t know

17. 12. If you caught swine flu, how likely do you think you would be to develop complications? (Please circle one answer.)

    1. Very likely

    2. Fairly likely

    3. Not very likely

    4. Not at all likely

    5. Don’t know

18. 13. How worried are you that you might die from swine flu? (Please circle one answer.)

    1. Very worried

    2. Fairly worried

    3. Not very worried

    4. Not at all worried

    5. Don’t know

19. 14. How confident are you that you could correctly recognise the symptoms of swine flu? (Please circle one answer.)

    1. Very confident

    2. Fairly confident

    3. Not very confident

    4. Not at all confident

    5. Don’t know

20. 15. How confident are you that you would know what to do if you thought you had swine flu? (Please circle one answer.)

    1. Very confident

    2. Fairly confident

    3. Not very confident

    4. Not at all confident

    5. Don’t know

21. 16. How confident are you that you could recognise the complications of swine flu and would know what to do about them? (Please circle one answer.)

    1. Very confident

    2. Fairly confident

    3. Not very confident

    4. Not at all confident

    5. Don’t know

22. 17. How confident are you that being vaccinated (having a jab) against swine flu would help you? (Please circle one answer.)

    1. Very confident

    2. Fairly confident

    3. Not very confident

    4. Not at all confident

    5. Don’t know

23. 18. Below is a list of behaviours or activities. For each, could you please tell me if, over the last week, you have done it more frequently, less frequently, or the same, as a result of swine flu? (Please circle one answer for each item. )

24. 19a. Have you ever had flu in the past? (Please circle one answer.)

    1. Yes, once

    2. Yes, more than once

    3. No, never

    4. Don’t know/can’t remember

25. 19b. If YES, how long ago was your most recent bout? (Please circle one answer.)

    1. Within the last year

    2. More than a year ago, but within the last five years

    3. More than five years ago

    4. Don’t know/can’t remember

26. 20. Have you had the regular winter flu jab in the past? (Please circle one answer.)

    1. Yes, regularly each year

    2. Yes, occasionally

    3. No, never

    4. Don’t know/can’t remember

27. 21. Please indicate by circling one answer whether you agree or disagree with the following statement: ‘As a result of swine flu, I am now more likely to get the regular winter flu jab’.

    1. Strongly agree

    2. Tend to agree

    3. Neither agree nor disagree

    4. Tend to disagree

    5. Strongly disagree

    6. Don’t know

28. 22. The Government recently announced that a swine flu vaccination programme will be rolled out across the UK starting this autumn. How likely, if at all, are you to take up a swine flu vaccination if offered it? (Please circle one answer.)

    1. Very likely

    2. Fairly likely

    3. Not very likely

    4. Not at all likely

    5. Don’t know

29. 23a. If you felt you had swine flu symptoms, which, if any, of the following would you do first? (Please circle one answer.)

    1. I would go to an A&E (casualty) department

    2. I would go to my family doctor/GP

    3. I would call my family doctor/GP

    4. I would call a health helpline for advice (e.g. NHS Direct)

    5. I would call Swine Flu Information

    6. I would stay at home and self-treat my symptoms

    7. I would visit an NHS, Department of Health or other health website for advice

    8. I would visit/go and see a community pharmacist (chemist)

    9. I would call the hospital chest clinic/my chest consultant’s secretary

    10. I would go to the walk-in chest clinic at the hospital

    11. None of these

    12. Don’t know

    13. Other (please specify)

        _____________________________________________________________________________________

30. 23b. And what else might you do? (Please circle all that apply. )

    1. I would go to an A&E (casualty) department

    2. I would go to my family doctor/GP

    3. I would call my family doctor/GP

    4. I would call a health helpline for advice (e.g. NHS Direct)

    5. I would call Swine Flu Information

    6. I would stay at home and self-treat my symptoms

    7. I would visit an NHS, Department of Health or other health website for advice

    8. I would visit/go and see a community pharmacist (chemist)

    9. I would call the hospital chest clinic/my chest consultant’s secretary

    10. I would go to the walk-in chest clinic at the hospital

    11. None of these

    12. Don’t know

    13. Other (please specify)

        _____________________________________________________________________________________

31. 24a. If you thought you were developing complications of swine flu, which, if any, of the following would you do first? (Please circle one answer.)

    1. I would go to an A&E (casualty) department

    2. I would go to my family doctor/GP

    3. I would call my family doctor/GP

    4. I would call a health helpline for advice (e.g. NHS Direct)

    5. I would call Swine Flu Information

    6. I would stay at home and self-treat my symptoms

    7. I would visit an NHS, Department of Health or other health website for advice

    8. I would visit/go and see a community pharmacist (chemist)

    9. I would call the hospital chest clinic/my chest consultant’s secretary

    10. I would go to the walk-in chest clinic at the hospital

    11. None of these

    12. Don’t know

    13. Other (please specify)

        _____________________________________________________________________________________

32. 24b. And what else might you do? (Please circle all that apply.)

    1. I would go to an A&E (casualty) department

    2. I would go to my family doctor/GP

    3. I would call my family doctor/GP

    4. I would call a health helpline for advice (e.g. NHS Direct)

    5. I would call Swine Flu Information

    6. I would stay at home and self-treat my symptoms

    7. I would visit an NHS, Department of Health or other health website for advice

    8. I would visit/go and see a community pharmacist (chemist)

    9. I would call the hospital chest clinic/my chest consultant’s secretary

    10. I would go to the walk-in chest clinic at the hospital

    11. None of these

    12. Don’t know

    13. Other (please specify)

        _____________________________________________________________________________________

33. 25. Have you chosen anyone to act as a ‘Swine Flu Friend/Buddy’ for you? (Please circle one answer.)

    1. Yes

    2. No, because I don’t think I need one

    3. No, because I don’t know what one is

    4. Don’t know

34. 26. As you may have heard, the antiviral medicines such as Tamiflu can sometimes help to reduce the symptoms of swine flu if taken right away. If you fell ill with swine flu, and wanted to obtain Tamiflu, how would you go about obtaining it, or how have you got it already? (Please circle all that apply.)

    1. I would go to an A&E (casualty) department

    2. I would go to my family doctor/GP

    3. I would call my GP/health centre

    4. I would call a health helpline for advice (e.g. NHS Direct)

    5. I would call the National Pandemic Flu Service (NPFS)

    6. I would ask a Flu Friend/Flu Buddy

    7. I would ask my local community pharmacist (chemist)

    8. I would look for information on news programmes on television

    9. I would look for information in the newspapers

    10. I would listen for information on news programmes on the radio

    11. I would look online – on news websites

    12. I would look online – on NHS, Department of Health or other health websites

    13. I would look online – on other websites

    14. I would look online – unspecified

    15. I would contact my chest consultant/the hospital chest clinic

    16. I would contact a chest specialist nurse (hospital or community)

    17. I already have a supply of Tamiflu

    18. None of these

    19. Don’t know

    20. Other (please specify)

        _____________________________________________________________________________________

35. 27. If you needed antiviral treatment for swine flu, from where would you prefer to get it? (Please circle one answer.)

    1. On prescription (from a GP/family doctor, hospital doctor, nurse, etc.)

    2. ‘Over the counter’ (from a community pharmacist/chemist)

    3. Without having to contact a health professional (e.g. internet, health food shop, etc.)

    4. Other (please state)

       _____________________________________________________________________________________

36. 28. Please indicate, by circling one answer, whether you agree or disagree with the following statement: ‘Too much fuss is being made about the risk of swine flu.’

    1. Strongly agree

    2. Tend to agree

    3. Neither agree nor disagree

    4. Tend to disagree

    5. Strongly disagree

    6. Don’t know

37. 29. Please tell us if you think each of the following statements is true or false. (Please circle one option for each item.)

38. 30. Please tell us if you think any of the following might be a symptom of swine flu or not (Please circle one option for each item.)

39. 31. If you had swine flu, would you get help if you developed any of the following symptoms? (Please circle one option for each item. )

40. 32. We’d like to know whether worries about swine flu are making you do anything different or feel different (Please circle all that apply.)

    Because of worries about swine flu:

    1. I have stopped or cut down on travelling by public transport (buses, trains, etc.)

    2. I am taking things like vitamins or food supplements

    3. I am avoiding crowded places (e.g. shops, cinemas, sports events, etc.)

    4. I am leaving the house less often

    5. I am avoiding contact with my friends and family members

    6. I feel that people are worried about being around me

    7. I have cut down or stopped smoking

    8. I have cancelled a holiday/rearranged travel plans

    9. I am keeping my windows and doors closed

    10. I feel more anxious than usual about my chest problem

    11. I am avoiding contact with children

    12. I would not take my medication/use my inhaler in a public place, even if I really needed it

    13. I am trying to get more exercise

    14. I am not leaving the house at all

    15. I feel more self-conscious about my chest problem

    16. I am avoiding contact with pets/animals

    17. I am using my inhaler(s) more often

    18. I would not wish to travel far within the United Kingdom

    19. I am eating more healthy foods

    20. I am much more aware of my chest problem than usual

    21. I am not sleeping well

    22. I would not wish to travel abroad

    23. I have cut down my usual social activities (e.g. going to the pub, eating out, etc.)

    24. I am avoiding contact with people who have been abroad

    25. I am constantly on the alert for changes in my chest problem

    26. I feel that other people are avoiding me

    27. I am more careful about taking my regular medications as instructed

    28. I am avoiding eating pork/ham/bacon, etc.

    29. I have tried to buy/bought Tamiflu

Now please tell us a bit about yourself:

1. 33. How old are you (in years)?

   _____________________________________________________________________________________

2. 34. What is your gender? (Please circle one answer.)

   1. 30. Male

   2. 31. Female

3. 35. What would you consider your ethnic group to be?

   _____________________________________________________________________________________

4. 36. Are you married or living with a partner? (Please circle one answer.)

   1. 32. Yes

   2. 33. No

5. 37a. What is your current occupation?

   _____________________________________________________________________________________

6. 37b. If retired or not working, what is your most recent previous occupation?

   _____________________________________________________________________________________

7. 38. Do you have any of the following? (Please circle all that apply.)

   1. CSE/O level/GCSE or equivalent

   2. A level or equivalent

   3. GNVQ

   4. Diploma

   5. Professional qualification (e.g. RGN, Cert Ed, City and Guilds)

   6. College/university degree (undergraduate/bachelor’s)

   7. Higher degree (Masters, MRes, PhD)

   8. None of the above

   9. Other (please state which)

      _____________________________________________________________________________________

8. 39. What is the name of your chest problem? (If you are not sure, please write ‘don’t know’.)

   _____________________________________________________________________________________

9. 40. What kind of treatment do you currently receive for your chest problem? (Please circle all that apply.)

   1. Tablets

   2. Inhalers

   3. Nebulisers

   4. Oxygen

   5. None of these

   6. Other (Please state which.)

      _____________________________________________________________________________________

10. 41. How severe would you rate your chest problem as being? (Please circle one answer.)

    1. Very mild

    2. Mild

    3. Moderate

    4. Severe

    5. Very Severe

    6. Don’t know

11. 42. Do you smoke? (Please circle one answer.)

    1. Yes, I currently smoke

    2. No, but I used to smoke

    3. No, I have never smoked

12. 43a. Apart from your chest problem, do you have any other health problems? (Please circle one answer.)

    1. Yes

    2. No

13. 43b. If YES, what are these problems?

    _____________________________________________________________________________________

14. 44. How did you find out about our study? (Please circle one answer.)

    1. I was handed a questionnaire at chest clinic

    2. I saw a poster at chest clinic

    3. I saw the piece about the study in the newspaper

    4. Someone (e.g. a friend or relative) told me about the study

    5. Other (please state)

       _____________________________________________________________________________________

15. 45. Any other comments?

    _____________________________________________________________________________________

If you want to contact us about this research, details are as follows:

Project Lead Researcher

Prof. Ann-Louise Caress

School of Nursing, Midwifery and Social Work

The University of Manchester

Room 6.341 Jean McFarlane Building

Manchester

M13 9PL

Tel: 0000 000 0000

Fax: 0000 000 0000

E-mail: ann.caress@manchester.ac.uk

For independent information about this research, please contact:

The University of Manchester’s Research Practice and Governance Co-ordinator

Tel: 0000 000 0000 or 0000 000 0000

E-mail: research-governance@manchester.ac.uk

Further information about swine flu can be found at:

National Pandemic Flu Service (NPFS): 0800 1 513 100

NPFS Textphone for people who are deaf/hard of hearing: 0800 1 513 200

The government’s Pandemic Flu website: www.direct.gov.uk/pandemicflu

The NHS Choices website: www.nhs.uk

THANK YOU FOR TAKING TIME TO COMPLETE THIS QUESTIONNAIRE

PLEASE RETURN THE QUESTIONNAIRE TO US IN THE ENCLOSED PRE-PAID ENVELOPE OR, IF COMPLETED WHILST AT CLINIC, ASK THE RECEPTIONIST (OR THE MEMBER OF CLINIC STAFF WHO GAVE YOU THE PACK) WHERE TO LEAVE IT – THANK YOU

YOU DO NOT HAVE TO PROVIDE ANY CONTACT INFORMATION. HOWEVER, IF YOU ARE WILLING TO DO SO (e.g. SO WE CAN SEND YOU A SUMMARY OF STUDY FINDINGS), PLEASE COMPLETE THE SEPARATE SHEET ATTACHED AND RETURN IT WITH YOUR COMPLETED QUESTIONNAIRE – THANK YOU

People with chest problems and swine flu

Identification Number: ___________________________________

Date: ___________________________________

1. 1. How much do you know about swine flu? (Please circle one answer.)

   1. None of the things I need or want to know

   2. A bit, but I’d like to know more

   3. Quite a lot, but I’d still like to know more

   4. As much as I need or want to know

2. 2. What, if anything, is the ‘number one’ thing you would like to know about swine flu? (If nothing, please state.)

   _____________________________________________________________________________________

3. 3a. How important do you think it is for the families of people who have a chest problem to receive information about each of the following topics? (Please circle one number for each item.)

4. 3b. Are there any important items missing from the above list? If so, what are they?

   _____________________________________________________________________________________

5. 4. How useful do you think each of the following is/could be as a source of information about swine flu for the families of people with chest problems? (Please circle one number for each item.)

6. 5. Now please tell us which of these items you personally would use as a source of information about swine flu (Please indicate by circling one number for each item.)

7. 6a. Have you already had any information about swine flu? (Please circle one answer.)

   1. Yes

   2. No

8. 6b. If YES, where from? (Please circle all that apply.)

   1. Leaflet delivered to my home

   2. Leaflet picked up somewhere else

   3. Poster displayed at work

   4. Poster displayed at GP surgery

   5. Poster displayed at hospital

   6. Internet – NHS Choices (www.nhs.uk)

   7. Internet – Government website (www.direct.gov.uk/pandemicflu)

   8. Internet – health-care organisation or health-care charity website

   9. Internet – other website

   10. NHS Direct (phone line)

   11. The Swine Flu Information Line (phone line, recorded information)

   12. Other telephone helpline (e.g. health-care charity)

   13. Friends or relatives

   14. General practitioner (GP)

   15. Practice nurse (GP’s nurse)

   16. Receptionist at GP’s surgery

   17. Community pharmacist (chemist)

   18. Specialist nurse (hospital or community)

   19. District nurse

   20. Health visitor

   21. Hospital consultant/specialist doctor

   22. Other hospital doctor

   23. Hospital doctor’s secretary or clinic receptionist

   24. Nurses on hospital wards or at clinics

   25. Other health professional (e.g. physiotherapist, occupational therapist)

   26. Minor injuries clinic or walk-in centre

   27. A&E (casualty) department

   28. National Pandemic Flu Service (website and phone line)

   29. The HPA

   30. Television

   31. Radio

   32. Newspaper

   33. Magazine

   34. Medical book/journal

   35. Patient self-help or support group

   36. Other (please state)

       _____________________________________________________________________________________

9. 7a. How satisfied or dissatisfied are you with the amount of information available to you on swine flu, from any source? (Please circle one answer.)

   1. Very satisfied

   2. Fairly satisfied

   3. Neither satisfied nor dissatisfied

   4. Fairly dissatisfied

   5. Very dissatisfied

   6. Don’t know

10. 7b. If DISSATISFIED, why is that?

    _____________________________________________________________________________________

11. 8a. Do you think that the information currently available about swine flu is helpful, or not? (Please circle one answer.)

    1. Yes

    2. No

    3. Don’t know

12. 8b. If NO, why not?

    _____________________________________________________________________________________

13. 9a. Do the families of people with chest problems need different information about swine flu from other people, or not? (Please circle one answer.)

    1. Yes

    2. No

    3. Don’t know

14. 9b. If YES, what is/should be different about the information provided?

    _____________________________________________________________________________________

Questions on the next two pages are about swine flu and you

1. 10. Swine flu is a form of influenza that originated in pigs, but can be caught by, and spread among, people. How worried, if at all, would you say you are now about the possibility of personally catching swine flu? (Please circle one answer.)

   1. Very worried

   2. Fairly worried

   3. Not very worried

   4. Not at all worried

   5. Don’t know

2. 11. Because of your family member’s chest problem, do you think you are more likely than other people to catch swine flu, or not? (Please circle one answer.)

   1. Very likely

   2. Fairly likely

   3. Not very likely

   4. Not at all likely

   5. Don’t know

3. 12. If you caught swine flu, how likely do you think you would be to develop complications? (Please circle one answer.)

   1. Very likely

   2. Fairly likely

   3. Not very likely

   4. Not at all likely

   5. Don’t know

4. 13. How worried are you that you might die from swine flu?(Please circle one answer.)

   1. Very worried

   2. Fairly worried

   3. Not very worried

   4. Not at all worried

   5. Don’t know

5. 14. How confident are you that you could correctly recognise the symptoms of swine flu in yourself? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

6. 15. How confident are you that you would know what to do if you thought you had swine flu? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

7. 16. How confident are you that you could recognise the complications of swine flu in yourself and would know what to do about them? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

8. 17. How confident are you that being vaccinated (having a jab) against swine flu would help you? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

Questions on the next two pages are about swine flu and your family member with chest problems

1. 18. How worried, if at all, would you say you are now about the possibility of your family member with chest problems catching swine flu? (Please circle one answer.)

   1. Very worried

   2. Fairly worried

   3. Not very worried

   4. Not at all worried

   5. Don’t know

2. 19. Do you think your family member with chest problems is more likely than other people to catch swine flu, or not? (Please circle one answer.)

   1. Very likely

   2. Fairly likely

   3. Not very likely

   4. Not at all likely

   5. Don’t know

3. 20. If your family member with chest problems caught swine flu, how likely do you think they would be to develop complications? (Please circle one answer.)

   1. Very likely

   2. Fairly likely

   3. Not very likely

   4. Not at all likely

   5. Don’t know

4. 21. How worried are you that your family member with chest problems might die from swine flu? (Please circle one answer.)

   1. Very worried

   2. Fairly worried

   3. Not very worried

   4. Not at all worried

   5. Don’t know

5. 22. How confident are you that you could correctly recognise the symptoms of swine flu in your family member with chest problems? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

6. 23. How confident are you that you would know what to do if you thought your family member with chest problems had swine flu? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

7. 24. How confident are you that you could recognise the complications of swine flu in your family member with chest problems and would know what to do about them? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

8. 25. How confident are you that being vaccinated (having a jab) against swine flu would help your family member with chest problems? (Please circle one answer.)

   1. Very confident

   2. Fairly confident

   3. Not very confident

   4. Not at all confident

   5. Don’t know

9. 26. Below is a list of behaviours or activities. For each, could you please indicate if, over the last week, you have done it more frequently, less frequently, or the same, as a result of swine flu? (Please circle one answer for each item. )

10. 27a. Have you ever had flu in the past? (Please circle one answer.)

    1. Yes, once

    2. Yes, more than once

    3. No, never

    4. Don’t know/can’t remember

11. 27b. If YES, how long ago was your most recent bout? (Please circle one answer.)

    1. Within the last year

    2. More than a year ago, but within the last 5 years

    3. More than 5 years ago

    4. Don’t know/can’t remember

12. 28. Have you had the regular winter flu jab in the past? (Please circle one answer.)

    1. Yes, regularly each year

    2. Yes, occasionally

    3. No, never

    4. Don’t know/can’t remember

13. 29. Please indicate by circling one answer whether you agree or disagree with the following statement: ‘As a result of swine flu, I am now more likely to get the regular winter flu jab.’

    1. Strongly agree

    2. Tend to agree

    3. Neither agree nor disagree

    4. Tend to disagree

    5. Strongly disagree

    6. Don’t know

14. 30a. The Government recently announced that a swine flu vaccination programme will be rolled out across the UK starting this autumn. How likely, if at all, are you to take up a swine flu vaccination if offered it? (Please circle one answer.)

    1. Very likely

    2. Fairly likely

    3. Not very likely

    4. Not at all likely

    5. Don’t know

15. 30b. When the new swine flu vaccine is produced, do you think your family member with chest problems should have it or not? (Please circle one answer.)

    1. They should definitely have it

    2. They should probably have it

    3. I am not sure whether they should have it or not

    4. They should probably not have it

    5. They definitely should not have it

    6. Don’t know

Questions on the next two pages are about swine flu and you

1. 31a. If you felt you had swine flu symptoms, which, if any, of the following would you do first? (Please circle one answer.)

   1. I would go to an A&E (casualty) department

   2. I would go to my family doctor/GP

   3. I would call my family doctor/GP

   4. I would call a health helpline for advice (e.g. NHS Direct)

   5. I would call Swine Flu Information

   6. I would stay at home and self-treat my symptoms

   7. I would visit an NHS, Department of Health or other health website for advice

   8. I would visit/go and see a community pharmacist (chemist)

   9. None of these

   10. Don’t know

   11. Other (Please specify)

       _____________________________________________________________________________________

2. 31b. And what else might you do? (Please circle all that apply.)

   1. I would go to an A&E (casualty) department

   2. I would go to my family doctor/GP

   3. I would call my family doctor/GP

   4. I would call a health helpline for advice (e.g. NHS Direct)

   5. I would call Swine Flu Information

   6. I would stay at home and self-treat my symptoms

   7. I would visit an NHS, Department of Health or other health website for advice

   8. I would visit/go and see a community pharmacist (chemist)

   9. None of these

   10. Don’t know

   11. Other (please specify)

       _____________________________________________________________________________________

3. 32a. If you thought you were developing complications of swine flu, which, if any, of the following would you do first? (Please circle one answer.)

   1. I would go to an A&E (casualty) department

   2. I would go to my family doctor/GP

   3. I would call my family doctor/GP

   4. I would call a health helpline for advice (e.g. NHS Direct)

   5. I would call Swine Flu Information

   6. I would stay at home and self-treat my symptoms

   7. I would visit an NHS, Department of Health or other health website for advice

   8. I would visit/go and see a community pharmacist (chemist)

   9. None of these

   10. Don’t know

   11. Other (please specify)

       _____________________________________________________________________________________

4. 32b. And what else might you do? (Please circle all that apply.)

   1. I would go to an A&E (casualty) department

   2. I would go to my family doctor/GP

   3. I would call my family doctor/GP

   4. I would call a health helpline for advice (e.g. NHS Direct)

   5. I would call Swine Flu Information

   6. I would stay at home and self-treat my symptoms

   7. I would visit an NHS, Department of Health or other health website for advice

   8. I would visit/go and see a community pharmacist (chemist)

   9. None of these

   10. Don’t know

   11. Other (please specify)

       _____________________________________________________________________________________

Questions on the next two pages are about swine flu and your family member with chest problems

1. 33a. f your family member with chest problems felt they had swine flu symptoms, which, if any, of the following would you advise them to do first? (Please circle one answer.)

   1. Go to an A&E (casualty) department

   2. Go to their family doctor/GP

   3. Call their family doctor/GP

   4. Call a health helpline for advice (e.g. NHS Direct)

   5. Call Swine Flu Information

   6. Stay at home and self-treat their symptoms

   7. Visit an NHS, Department of Health or other health website for advice

   8. Visit/go and see a community pharmacist (chemist)

   9. Call the hospital chest clinic/their chest consultant’s secretary

   10. Go to the walk-in chest clinic at the hospital

   11. None of these

   12. Don’t know

   13. Other (please specify)

       _____________________________________________________________________________________

2. 33b. And what else might you advise them to do? (Please circle all that apply.)

   1. Go to an A&E (casualty) department

   2. Go to their family doctor/GP

   3. Call their family doctor/GP

   4. Call a health helpline for advice (e.g. NHS Direct)

   5. Call Swine Flu Information

   6. Stay at home and self-treat their symptoms

   7. Visit an NHS, Department of Health or other health website for advice

   8. Visit/go and see a community pharmacist (chemist)

   9. Call the hospital chest clinic/their chest consultant’s secretary

   10. Go to the walk-in chest clinic at the hospital

   11. None of these

   12. Don’t know

   13. Other (please specify)

       _____________________________________________________________________________________

3. 34a. If your family member with chest problems thought they were developing complications of swine flu, which, if any, of the following would you do first? (Please circle one answer.)

   1. Go to an A&E (casualty) department

   2. Go to their family doctor/GP

   3. Call their family doctor/GP

   4. Call a health helpline for advice (e.g. NHS Direct)

   5. Call Swine Flu Information

   6. Stay at home and self-treat their symptoms

   7. Visit an NHS, Department of Health or other health website for advice

   8. Visit/go and see a community pharmacist (chemist)

   9. Call the hospital chest clinic/their chest consultant’s secretary

   10. Go to the walk-in chest clinic at the hospital

   11. None of these

   12. Don’t know

   13. Other (please specify)

       _____________________________________________________________________________________

4. 34b. And what else might you advise them to do? (Please circle all that apply.)

   1. Go to an A&E (casualty) department

   2. Go to their family doctor/GP

   3. Call their family doctor/GP

   4. Call a health helpline for advice (e.g. NHS Direct)

   5. Call Swine Flu Information

   6. Stay at home and self-treat their symptoms

   7. Visit an NHS, Department of Health or other health website for advice

   8. Visit/go and see a community pharmacist (chemist)

   9. Call the hospital chest clinic/their chest consultant’s secretary

   10. Go to the walk-in chest clinic at the hospital

   11. None of these

   12. Don’t know

   13. Other (please specify)

       _____________________________________________________________________________________

5. 35a. Have you chosen anyone to act as a ‘Swine Flu Friend/Buddy’ for you?

   1. Yes

   2. No, because I don’t think I need one

   3. No, because I don’t know what one is

   4. Don’t know

6. 35b. Has your family member with a chest problem chosen anyone to act as a ‘Swine Flu Friend/Buddy’ for them?

   1. Yes

   2. No, because they don’t think they need one

   3. No, because they don’t know what one is

   4. Don’t know

7. 36a. As you may have heard, the antiviral medicines such as Tamiflu can sometimes help to reduce the symptoms of swine flu if taken right away. If you fell ill with swine flu, and wanted to obtain Tamiflu, how would you go about obtaining it, or how have you got it already? (Please circle all that apply.)

   1. I would go to an A&E (casualty) department

   2. I would go to my family doctor/GP

   3. I would call my GP/health centre

   4. I would call a health helpline for advice (e.g. NHS Direct)

   5. I would call the National Pandemic Flu Service (NPFS)

   6. I would ask a Flu Friend/Flu Buddy

   7. I would ask my local community pharmacist (chemist)

   8. I would look for information on news programmes on television

   9. I would look for information in the newspapers

   10. I would listen for information on news programmes on the radio

   11. I would look online – on news websites

   12. I would look online – on NHS, Department of Health or other health websites

   13. I would look online – on other websites

   14. I would look online – unspecified

   15. I already have a supply of Tamiflu

   16. None of these

   17. Don’t know

   18. Other (please specify)

       _____________________________________________________________________________________

8. 36b. If your family member with chest problems fell ill with swine flu, and wanted to obtain Tamiflu, how would you advise them go about obtaining it, or have they got it already? (Please circle all that apply.)

   1. Go to an A&E (casualty) department

   2. Go to their family doctor/GP

   3. Call their GP/health centre

   4. Call a health helpline for advice (e.g. NHS Direct)

   5. Call the National Pandemic Flu Service (NPFS)

   6. Ask a Flu Friend/Flu Buddy

   7. Ask their local community pharmacist (chemist)

   8. Look for information on news programmes on television

   9. Look for information in the newspapers

   10. Listen for information on news programmes on the radio

   11. Look online – on news websites

   12. Look online – on NHS, Department of Health or other health websites

   13. Look online – on other websites

   14. Look online – unspecified

   15. Contact their chest consultant/the hospital chest clinic

   16. Contact a chest specialist nurse (hospital or community)

   17. They already have a supply of Tamiflu

   18. None of these

   19. Don’t know

   20. Other (please specify)

       _____________________________________________________________________________________

9. 37a. If you needed antiviral treatment for swine flu, from where would you prefer to get it? (Please circle one answer.)

   1. On prescription (from a GP/family doctor, hospital doctor, nurse, etc.)

   2. ‘Over the counter’ (from a community pharmacist/chemist)

   3. Without having to contact a health professional (e.g. internet, health food shop, etc.)

   4. Don’t know

   5. Other (please state)

      _____________________________________________________________________________________

10. 37b. If your family member with chest problems needed antiviral treatment for swine flu, from where do you think they would prefer to get it? (Please circle one answer.)

    1. On prescription (from a GP/family doctor, hospital doctor, nurse, etc.)

    2. ‘Over the counter’ (from a community pharmacist/chemist)

    3. Without having to contact a health professional (e.g. internet, health food shop, etc.)

    4. Don’t know

    5. Other (please state)

       _____________________________________________________________________________________

11. 38. Please indicate, by circling one answer, whether you agree or disagree with the following statement: ‘Too much fuss is being made about the risk of swine flu.’

    1. Strongly agree

    2. Tend to agree

    3. Neither agree nor disagree

    4. Tend to disagree

    5. Strongly disagree

    6. Don’t know

12. 39. Please tell us if you think each of the following statements is true or false. (Please circle one option for each item.)

13. 40. Please tell us if you think any of the following might be a symptom of swine flu or not. (Please circle one option for each item.)

14. 41a. If you had swine flu, would you get help if you developed any of the following symptoms? (Please circle one option for each item.)

15. 41b. If your family member with chest problems had swine flu, would you get help if they developed any of the following symptoms? (Please circle one option for each item.)

16. 42. We’d like to know whether worries about swine flu are making you do anything different or feel different. (Please circle all that apply to you.)

Because of worries about swine flu:

1. I have stopped or cut down on travelling by public transport (buses, trains, etc.)

2. I am taking things like vitamins or food supplements

3. I am avoiding crowded places (e.g. shops, cinemas, sports events, etc.)

4. I am leaving the house less often

5. I am avoiding contact with my friends and family members

6. I feel that people are worried about being around me because of my family member’s chest problem

7. I have cut down or stopped smoking

8. I have cancelled a holiday/rearranged travel plans

9. I am keeping my windows and doors closed

10. I feel more anxious than usual about my family member’s chest problem

11. I am avoiding contact with children

12. I am avoiding contact with my family member with chest problems

13. I am trying to get more exercise

14. I am not leaving the house at all

15. I feel more self-conscious about having a family member with chest problems

16. I am avoiding contact with pets/animals

17. I would not wish to travel far within the United Kingdom

18. I am eating more healthy foods

19. I am much more aware of my family member’s chest problem than usual

20. I am not sleeping well

21. I would not wish to travel abroad

22. I have cut down my usual social activities (e.g. going to the pub, eating out, etc.)

23. I am avoiding contact with people who have been abroad

24. I am constantly on the alert for changes in my family member’s chest problem

25. I feel that other people are avoiding me because of my family member’s chest problem

26. I am avoiding eating pork/ham/bacon, etc.

27. I have tried to buy/bought Tamiflu

1. 43. We’d like to know whether you think worries about swine flu are making your family member with chest problems do anything different or feel different. (Please circle allthat you think apply to your family member with chest problems. )

Because of worries about swine flu, my family member with chest problems :

1. Has stopped or cut down on travelling by public transport (buses, trains, etc.)

2. Is taking things like vitamins or food supplements

3. Is avoiding crowded places (e.g. shops, cinemas, sports events, etc.)

4. Is leaving the house less often

5. Is avoiding contact with their friends and family members

6. Feels that people are worried about being around them due to their chest problem

7. Has cut down or stopped smoking

8. Has cancelled a holiday/rearranged travel plans

9. Is keeping their windows and doors closed

10. Is more anxious than usual about their chest problem

11. Is avoiding contact with children

12. Will not take their medication/use their inhaler in public, even if they really need it

13. Is trying to get more exercise

14. Is not leaving the house at all

15. Is feeling more self-conscious about their chest problem

16. Is avoiding contact with pets/animals

17. Is using their inhaler(s) more often

18. Would not wish to travel far within the UK

19. Is eating more healthy foods

20. Is much more aware of their chest problem than usual

21. Is not sleeping well

22. Would not wish to travel abroad

23. Has cut down their usual social activities (e.g. going to the pub, eating out, etc.)

24. Is avoiding contact with people who have been abroad

25. Is constantly on the alert for changes in their chest problem

26. Feels that other people are avoiding them

27. Is more careful about taking their regular medications as instructed

28. Is avoiding eating pork/ham/bacon, etc.

29. Has tried to buy/bought Tamiflu

Now please tell us a bit about yourself:

1. 44. What is your relationship with your family member with chest problems?

   1. Wife

   2. Husband

   3. Son

   4. Daughter

   5. Parent

   6. Other (please state which)

      _____________________________________________________________________________________

2. 45. How old are you (in years)?

   _____________________________________________________________________________________

3. 46. What is your gender? (Please circle one answer.)

   1. Male

   2. Female

4. 47. What would you consider your ethnic group to be?

   _____________________________________________________________________________________

5. 48. Are you married or living with a partner? (Please circle one answer.)

   1. Yes

   2. No

6. 49a. What is your current occupation?

   _____________________________________________________________________________________

7. 49b. If retired or not working, what is your most recent previous occupation?

   _____________________________________________________________________________________

8. 50. Do you have any of the following? (Please circle all that apply.)

   1. CSE/O level/GCSE or equivalent

   2. A level or equivalent

   3. GNVQ

   4. Diploma

   5. Professional qualification (e.g. RGN, Cert Ed, City and Guilds)

   6. College/university degree (undergraduate/bachelor’s)

   7. Higher degree (Masters, MRes, PhD)

   8. None of the above

   9. Other (please state which)

      _____________________________________________________________________________________

9. 51. What is the name of your family member’s chest problem? (If you are not sure, please write ‘don’t know’.)

   _____________________________________________________________________________________

10. 52. How severe would you rate your family member’s chest problem as being? (Please circle one answer.)

    1. Very mild

    2. Mild

    3. Moderate

    4. Severe

    5. Very severe

    6. Don’t know

11. 53. Do you smoke? (Please circle one answer.)

    1. Yes, I currently smoke

    2. No, but I used to smoke

    3. No, I have never smoked

12. 54. How did you find out about our study? (Please circle one answer.)

    1. My family member with a chest problem gave me the questionnaire

    2. I saw a poster at chest clinic

    3. I saw the piece about the study in the newspaper

    4. Someone (e.g. a friend or relative) told me about the study

    5. Other (please state)

       _____________________________________________________________________________________

13. 55. Any other comments?

    _____________________________________________________________________________________

If you want to contact us about this research, details are as follows:

Project Lead Researcher

Prof. Ann-Louise Caress

School of Nursing, Midwifery and Social Work

The University of Manchester

Room 6.341 Jean McFarlane Building

Manchester

M13 9PL

Tel: 0000 000 0000

Fax: 0000 000 0000

E-mail: ann.caress@manchester.ac.uk

For independent information about this research, please contact:

The University of Manchester’s Research Practice and Governance Co-ordinator

Tel: 0000 000 0000 or 0000 000 0000

E-mail: research-governance@manchester.ac.uk

Further information about swine flu can be found at:

National Pandemic Flu Service (NPFS): 0800 1 513 100

NPFS Textphone for people who are deaf/hard of hearing: 0800 1 513 200

The government’s Pandemic Flu website: www.direct.gov.uk/pandemicflu

The NHS Choices website: www.nhs.uk

THANK YOU FOR TAKING TIME TO COMPLETE THIS QUESTIONNAIRE

PLEASE RETURN THE QUESTIONNAIRE TO US IN THE ENCLOSED PRE-PAID ENVELOPE OR, IF COMPLETED WHILST AT CLINIC, ASK THE RECEPTIONIST (OR THE MEMBER OF CLINIC STAFF WHO GAVE YOU THE PACK) WHERE TO LEAVE IT – THANK YOU

YOU DO NOT HAVE TO PROVIDE ANY CONTACT INFORMATION. HOWEVER, IF YOU ARE WILLING TO DO SO (e.g. SO WE CAN SEND YOU A SUMMARY OF STUDY FINDINGS), PLEASE COMPLETE THE SEPARATE SHEET ATTACHED AND RETURN IT WITH YOUR COMPLETED QUESTIONNAIRE – THANK YOU

Introductory question

• Have you heard about swine flu? (Probe: where/who from?)

Information needs

• What, if anything, is the number one thing you’d like to know about swine flu? (Probes: key information topics, priority information.)

• Do people with chest problems/family members need different information from other people? (Probe: specific topics, differences between patients and families.)

• How well informed to do feel about swine flu? (Probes: gaps in knowledge, usefulness of information, volume of information.)

• Which sources of information have you found most/least useful? (Probes: preferred sources, quality, accessibility and credibility of information.)

Concerns

• How worried are you about swine flu? (Probes: susceptibility, severity, consequences.)

• Are you more worried about swine flu because you have/your family member has chest problems? (Probes: susceptibility, severity, consequences.)

Behaviours

• Do you know what the government is recommending that people do to help stop swine flu spreading? (Probes: recommendations, behaviours regarding these.)

• What would you do if you thought you had swine flu? (Probes: awareness of recommendations, likely actions taken, use of health services.)

• What would you do if you thought you were developing complications of swine flu? (Probes: awareness of symptoms, likely actions taken, use of health services.)

• Are you doing anything different from normal because of swine flu? (Probes: avoidance behaviours, health promotion, medication use.)