qualitative case study mental health

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Brazier J, Connell J, Papaioannou D, et al. A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures. Southampton (UK): NIHR Journals Library; 2014 May. (Health Technology Assessment, No. 18.34.)

A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures.

Chapter 6 a qualitative analysis of interviews with mental health service users.

This chapter builds on the systematic review of qualitative research into the meaning of quality of life for people with mental health problems reported in Chapter 5 . The review identified six major themes: well-being and ill-being; control, autonomy and choice; self-perception; belonging; activity; and hope and hopelessness. One limitation of the review was that available studies focused on the quality of life of people with severe and enduring mental health problems, particularly schizophrenia. To complement the review we undertook primary research with participants from mental health services serving those with severe and enduring mental health problems and mild to moderate common mental health problems. This allowed us to explore the extent to which the review addressed important aspects of quality of life for those with severe mental health problems, given that most concerns have been expressed about the utility of preference-based measures in this group, and also to explore the views of people with less severe problems, which represent a gap in the current evidence base. This chapter presents the additional insights from the interviews and presents an assessment of the content validity of the EQ-5D and SF-36 against the themes identified. This assessment of content validity is extended to a new generic measure, the ICECAP-A, as this was developed from interviews with members of the general public.

We undertook a qualitative study of face-to-face semistructured interviews with current users of mental health services.

Recruitment

Participants were recruited from three mental health service providers in a city in the north of England. One service (IAPT) provided psychological therapies for those suffering from mild to moderate depression and anxiety. The other two were community mental health teams (CMHTs) providing services for those with more severe problems, one working with individuals with severe and complex non-psychotic disorders (e.g. severe depression, PTSD, personality disorder) and the other with those with psychotic disorders (e.g. schizophrenia, bipolar disorder). Recruitment was undertaken by service providers who applied wide inclusion criteria in order to capture as broad a range of mental health problems as possible. Exclusions included those individuals facing acute episodes of their mental health condition, those not well enough to take part, and those who could not speak English or give consent, as well as cases where there was a known recent forensic history or any doubt relating to the safety of the researcher undertaking the interview in the person’s own home. After a brief explanation of the research by the mental health provider, those persons who expressed an interest in taking part were given a recruitment pack consisting of a letter from the university-based researcher and a flyer giving concise information about the research, plus an ‘expression of interest’ form to be returned to the researcher in an included SAE. The researcher subsequently contacted the person to give further details, answer any questions and arrange the interview if the person was still happy to go ahead (none refused at this stage). A confirmation letter was sent, together with detailed information about the research (including confidentiality, anonymity and right to withdraw) and a consent form for completion prior to the interview. A choice of venue was offered, which could be the person's own home, a room at a university in the north of England or a centre frequently used by mental health services in an easily accessible part of the city. A £10 shopping voucher was offered for participation in the research. Approval for the above procedures was given by the local Research Ethics Committee.

The services recruited 21 people to take part in the research and 17 were subsequently interviewed, nine from the IAPT service and eight from the CMHTs. Four potential participants were recruited by the service providers but did not attend interview, two could not be contacted and did not respond to messages left on their telephones (one IAPT, one CMHT), one arranged an interview but cancelled because they felt too ill to attend (CMHT) and another did not attend an arranged interview (CMHT). A further two participants with psychotic disorders were recruited by one of the participants subsequent to her own interview.

All 19 participants were interviewed by a member of the project team (JC), a mental health researcher with a background in behavioural sciences and outcome measure development. The interviews were semistructured with the use of a topic guide (see Appendix 5 ) to ensure that a common set of questions was asked. The topic guide was based on the synthesis of a qualitative review presented in Chapter 2 and, as the ultimate aim of the research was to establish the suitability or otherwise of the most commonly used generic quality of life measures, it included the item content of the EQ-5D and the SF-36. Three pilot interviews had taken place with people with different diagnoses (schizophrenia, bipolar disorder and depression) to test the topic guide. The guide was not changed substantially apart from a decision being made to include questions relating to the items of the EQ-5D and SF-36 as part of the interview rather than administering the actual measures. The first part of the interview aimed to elicit what was important to quality of life from the perspective of the individual, without any prompts. The interview started by asking for background information, and information on current activities and the participant's health, using responsive questions to probe these aspects of his or her life and to determine their relative importance. Participants were asked general open-ended questions about what affected their quality of life both from a positive and negative perspective, what they enjoyed and why, what they would most like to change, what helped, and what was stopping them doing what they wanted to do. Once their own perceptions had been exhausted, the interviewer introduced concepts that the research review had raised or that were included in the EQ-5D or SF-36. The interviews took place when the researchers were part way through analysing the data from the review, when the themes were descriptive in nature rather than conceptual. These were raised only if they had not already been discussed in the interview, and included questions about the relative importance or effect on their quality of life of relationships, support, stigma, work, leisure activities, mental health symptoms and their relative effects, medication and side effects, physical health/pain, energy/motivation, self-esteem/confidence, mental health services/workers, and finances.

All the interviews were tape recorded apart from one, where notes were taken at the request of the interviewee. One further interview was recorded but accidently deleted; notes for this interview were made 3 days after the interview took place. The interviews lasted between 25 minutes and 1 hour 50 minutes, averaging 1 hour 16 minutes. Seven of the interviews took place in the participant’s own home. These tended to be people with more severe problems, five of whom were recruited by the CMHTs. The remaining two, from the IAPT service, had difficulties leaving their homes because of anxiety. The remainder of the interviews were conducted in a room at the university.

Participants

Interviewees included 11 men and eight women. These comprised one participant in his 20s, six in their 30s, eight in their 40s, three in their 50s and one in his 60s. One participant was of African Asian descent and another African Caribbean; the remainder were white European. A broad range of mental health problems were represented including schizophrenia, schizoaffective disorder, personality disorder, PTSD, mild to severe depression, anxiety, agoraphobia, eating disorder and anger. All, with the exception of one, were not in paid employment at the time of the interview although most had worked at some time in the past or were currently employed in a voluntary capacity. Five were married or with a partner; the remainder were not currently in a relationship. Further contextual information about the participants can be found in Table 24 .

Interviewee characteristics

The interview recordings were transcribed verbatim. Notes were used for two interviews. The interview data were analysed thematically using framework analysis. 198 Framework analysis was used to allow the identification of common and variable patterns of themes within and across different groups, in particular relating to problem severity and type. This analytical method also allowed for comparisons to be made with thematic findings from the review of qualitative research previously undertaken. The themes identified in the review made up the initial themes of the framework. Next, each transcript was read for refamiliarisation. Interview text was then charted onto the framework for the most part using the predefined themes of the review. This was either charted verbatim or paraphrased depending upon the relevance and focus of the response to the research question. Nothing was considered irrelevant and all data were coded in some form. All charted text was indexed with the interview timings that had been noted in the transcript so that actual dialogue could be returned to ensure contextual accuracy. It was not unusual for text to be coded under more than one theme, often one descriptive and another conceptual. Cross-references between themes were noted.

Subjective well-being and ill-being

Within the review (see Chapters 5 and Connell et al. 199 ) the focus of subjective well-being was on the negative rather than the positive aspects of well-being; that is, what takes quality away from life rather than what adds quality to life. Thus the focus was on overall feelings of distress related to the symptoms of mental illness. These included the feelings of depression, a lack of energy, motivation and enthusiasm, fear and anxiety (particularly in social situations, and fear of relapse) and the distressing symptoms of psychosis including hearing voices, hallucinations and paranoia. These aspects of ill-being were also described in our interviews, particularly by those with severe and enduring mental health problems. Thus, when asked what would improve their lives, participants tended to cite the absence of these negative issues rather than the presence of the positive aspects of subjective well-being such as feeling happy. When asked what made them happy the response was often ‘nothing’. The expectation of ever feeling happy for this population was low.

I’m wanting to change – the biggest issue with my life, but there is a waiting list. There’s a new therapy coming out called EMDR [eye movement desensitisation and reprocessing]. I got put down for it once but I was having suicidal thoughts, erm I’ve not attempted this year so I have been accepted . . . I will still get flash backs but I won’t get the trauma afterwards and that’s what I want to get rid of, I don’t want to be traumatised every day, my coping strategies don’t work for me . . . I would just want limited life back, instead of the full quality of life[.] Participant 8 (CMHT, PTSD)

Interviewer: Can you think of anything that might make you happy, or happier?

Interviewee: No! Perhaps if I was a different person that would make me happy, I don’t know what else to say . . .

Participant 4 (CMHT, anxiety/depression)

In contrast, interviewees with less severe mental health problems did speak of the experience of happiness and enjoyment, although it was often tempered. They spoke of enjoying current hobbies and pastimes, or happiness as a feeling they wished to regain.

Interviewer: What makes you happy?

Interviewee: Making sure that my wife is comfortable and happy, my son, my garden is just – simple things really, there is no major thing that I can think of . . . my grand-daughter makes me happy[.]

Participant 18 (IAPT, depression)

There were aspects of well-being that were identified in the review, but were much more prominent in the interviews. The first was the desire to feel calm, relaxed and peaceful, which was described across all mental health problem types and levels of severity. For one interviewee the need to feel calm and relaxed was in contrast to feelings of anger, which was an emotion affecting quality of life that was not included in the review.

I can remember when I used to be relaxed and chilled and not feeling like I do now, but I’ve felt like this for such a long time and anxious for such a long time, but I can remember what it was like not to feel like this, it’s a marvellous feeling[.] Participant 10 (IAPT, anxiety/panic attacks)

. . . it’s hard but I have just got to lose this anger, if not I am just not going to get any better, I’m just going to carry on and I am going to end up, like I said before, I will end up either crippled, dead or locked up and I don’t want that, I just want to be able do what I want to do in the daytime and get home at night and just relax[.] Participant 3 (IAPT, depression/anger)

Related to a desire to feel calm and relaxed was a need to feel safe. However, the strategies used to ensure these feelings of safety could inhibit other aspects of quality of life.

Where you are familiar with, where you feel alright like in [name of student area] full of students, they’re harmless, as long as you don’t bother them, that’s it, they think you are one of them because you’re young as well . . . everything matters, whether the people are safe whether the area is nice area, whether you know it properly, everything matters, yeah, every little bit contributes[.] Participant 16 (CMHT, schizophrenia)

It is the safety issue that is most important, I have to keep myself safe . . . I can’t like go out now in case I bump into somebody in [name of district] they go home and they say ‘oh I met a young lady called so and so, in a different area‘ and they know me and my life might not be worth living . . . I am now trying to get out more, even just walk round the shops or summat, but it is hard[.] Participant 8 (CMHT, PTSD)

Lack of concentration was a negative aspect of subjective well-being that was more prominent in the interviews. Those with severe problems, or experiencing feelings of depression at their worst, reported that they were no longer able to enjoy even the simplest of activities such as reading or watching TV because of difficulties concentrating. This also meant that they were unable to find a distraction from their problems. Those with less severe problems reported a perception that their concentration was getting worse, but not to the extent that it took away from enjoyment of hobbies or pastimes.

I used to play golf quite a lot, but I’ve not played for quite a while . . . I just don’t get the same enjoyment out of it like I used to do. It used to be a nice walk and concentrating on – I think that’s the other thing, I can’t concentrate on it anymore. It takes a lot of concentration, does golf . . . I can’t hit t’ball like I used to, just because I’ve got depression, it sounds weird, that, but I can’t play like I used to do[.] Participant 7 (CMHT, depression)

Missing from the review was any indication of the aspects of subjective well-being affecting quality of life the most. Those who gave an indication at interview of having comorbid problems were asked this question and the overwhelming response was ‘the depression’. When asked why, they stated that it was due to its all-consuming nature over which they felt they had no control. They could obtain some relief from anxiety or the voices, but depression was an ever-present darkness that they found much more difficult to cope with.

The depression is worse than the voices, because the voices sometimes, when you are with people, like now with you, I’m not hearing them, if you’re doing serious matters, but I don’t know how long that be, with me not hearing voices, but the depression is always there . . . it’s like the English tradition, you heat milk – in the oven, in a pan, or in the microwave, and when you heat it properly you get something covering the upper layer of the milk, that’s the depression, covering all the good moods and everything, and interests . . . and it covers all your body, it affects your motivation, your energy, and you don’t want to do nothing and you end up sad . . . so like it covers up all your happiness and everything, to me, in my opinion[.] Participant 16 (CMHT, schizophrenia)

. . . well both things stop me doing things but the depression is a lot harder to cope with, the anxiety you can take medication so that helps erm it might get severe like if I have panic attacks but panic attacks only last for a few minutes whereas depression just seems to go on and on and feels a lot harder to cope with[.] Participant 13 (CMHT, depression)

Physical health

Physical health was not evident as a theme within many of the studies in the review. In contrast, the majority of our interviewees reported a physical health problem and this was mentioned by interviewees with all diagnoses and severities of problems covered in the sample. Physical and mental health interacted in various and complex ways.

Some reported that their mental health problems, or medication, caused or exacerbated their physical health difficulties.

It feels physical as well as mental . . . my body aches and like I think I just become really tense and that is what makes my body ache and I feel like erm I feel like my chest is being crushed and erm I can’t breathe and things like that and erm I just want to be asleep all the time to escape but I can’t sleep[.] Participant 13 (CMHT, depression/affective personality disorder)

For others it was their physical health problems that contributed to deterioration in their mental health.

I’ve got diabetes, I’ve got high blood pressure, I’ve got arthritis, I’ve got angina, I’m on too many medications. I don’t know what they are all for and it’s just this last 6 months it has just been getting me down[.] Participant 3 (IAPT, depression)

Participants were asked whether their physical or mental health problems affected their quality of life the most. Some found this difficult to answer, or described how the two interacted with each other. The presence of both seemed to make life particularly difficult to cope with.

. . . the two now are sort of like together on a par, I can’t cope with both of them at all . . . it is bad enough trying to cope with what’s going off in my head, but with my body in pain every day I can’t even cope, I can’t cope with that as well[.] Participant 12 (IAPT, depression)

Self-perception

The concepts of self-efficacy, self-identity, self-stigma and self-esteem identified within the review were all revealed as having an effect on many aspects of our interviewees’ lives. This was often communicated after prompting rather than being something immediately obvious to them and explicitly stated. Consistent with the review was an acknowledgement that a lack of self-worth and confidence was preventing them from doing things that might potentially improve their quality of life, yet it was difficult to overcome.

. . . it is the area of, um, you know, not willing to take, to step out and get out of my comfort zone is what I’m the most challenged on. So I do generally feel, er, inadequate in a way because I don’t, I won’t, should I say, I ought to, sort of, you know, take control, risk, if you like, and actually get on with it rather than, you know . . . like I say, well in terms of finding a partner, it’s a confidence thing, you know, I see too much danger and, sort of, think perhaps that if you find, it would be difficult to find somebody who genuinely loved me for who I am [laughs], so, um, and I know it’s not just in – it’s in other life choices as well and er – but I’m not saying be reckless and gamble, recklessly do things but, on the other hand, um, sometimes chance favours those who will be prepared to take a chance . . . Participant 17 (other, schizophrenia)

A negative perception of the self that affected quality of life was expressed by interviewees with all diagnoses and severities of illness. However, those who appeared most distressed at the time of the interview reported how a lack of self-esteem and confidence currently affected their lives in a detrimental way. Those with less severe problems talked about how their confidence was improving or that they were trying to address this and consequently improve their lives.

Yes it has improved a lot, if you had asked me to come here 7 week ago there was no way I would be able to come but now I have come on the bus. I feel a lot better in myself, if you had asked me 7 weeks ago I would have had to say come to my house, there was no way I could have come out. It was the thought of going out in the open I know it is horrible saying it but it knocked me for six kind of thing. Participant 2 (IAPT, anxiety)

A further difference identified within our interviews was that for some a lack of confidence and self-esteem was something they felt had affected them all their lives and had contributed to their mental health problems, whereas for others this was a consequence of their illness.

I have got no confidence to do the things I used to do and self-esteem, no, just lack it. You see before I was a right confident person, until what happened to me happened, so I don’t know whether my self-confidence will come back, ’cos before I was very confident, I had to do hand overs at work and like talk to GPs and things like that, and it didn’t bother me, and now I don’t even like talking to people some days [laughs], I don’t know what it is, I just put it down to my illness[.] Participant 8 (CMHT, PTSD)

The review identified how those with bipolar disorder, schizophrenia and panic disorder in particular described difficulties with having a coherent sense of self. This was also evident in our interviews; however, one interviewee diagnosed with schizoaffective disorder described how this could have a positive as well as a negative effect.

. . . it’s almost like this different personality of voices bouncing round your head, kind of, you know what you’d call your train of thought, your own, kind of, inner dialogue, that kind of, it’s like you’ve got that, but yet there’s other ones trying to, kind of, take over and become that train of thought and they’ve got their own voices and their own personalities and their own characteristics and you’re like struggling to, kind of, stop them hijacking your brain, in a way, and so you kind of, you’re having conversations in your head with them and, kind of, talk, and sometimes it’s really funny and good, it’s like having two mates round and you’re just arguing and talking and at other times, you kind of, you lose track of who you are, if you know what I mean[.] Participant 14 (CMHT, schizoaffective disorder)

Autonomy, control and choice

Consistent with the review, our interviews revealed the importance to quality of life of the related concepts of autonomy, control and choice. The review highlighted the complex juxtaposition between support and independence: the dilemma between needing support and valuing independence while not wishing to be too dependent. This same quandary was communicated by our interviewees. They spoke of an aspiration for independence but with an acknowledgement by some that support, and sometimes dependence, were necessary during periods of illness when they were not in a position to help themselves. The need and desire for support and independence therefore changed over time.

. . . when you’re depressed, you’ve got, kind of, you’re very reluctant or unable to help yourself, and even if there’s loads on offer, you won’t find it, you kind of, you need to keep in touch with people, like, so me seeing my family or as many friends as I can and like the social worker, is vital, otherwise you could, you know, get really really down[.] Participant 14 (CMHT, schizoaffective disorder)

In our interviews, the value of support for quality of life was expressed primarily by those with severe mental health problems, whereas those with less severe problems were more likely to be actively working towards greater independence. Of our interviewees, the person for whom independence appeared to be of the greatest importance and dependency the most troublesome had physical as well as mental health problems which affected their mobility. Being independent was important for dignity, pride and privacy, whereas being dependent resulted in feelings of guilt and being a burden which could put a strain on a good relationship.

Interviewee: Just to sort of do something on my own without like oh well I’ve got to get out or whatever, will you come to bus stop with me, or got to ring a taxi, just to be able to say ‘right I’m off’ not disappear but just say ‘right, I’ll see yer’ and just go without having ‘where you going, what time you coming back’ . . . I am dependent on people.

Interviewer: How does that make you feel?

Interviewee: Fed up sometimes, I mean don’t get me wrong, I would go out with my daughter or my friend but that would be by choice. You know like ‘oh I am meeting’ her rather than [daughter saying] ‘oh well I’ve got to meet her cos I’ve got to go shopping’. That sounds awful, but that’s the – do you know what I mean. You know without her thinking ‘oh I can’t do this cos I’ve got to make sure me mam’s all right’[.]

Participant 9 (IAPT, depression)

Also consistent with the review was a need for control, particularly symptom control, for those with psychosis and anxiety-related problems. For these interviewees a fear of losing control was evident. However, this prevented them from doing some of the things they would like and increased dependency upon others. This showed that although control was desired, and increased feelings of well-being, too much control could have a detrimental effect on quality of life. Our interviewees were very much aware of this but found it difficult to change and find the balance between the two. A consequence of this was that they felt bad about themselves because they were not living up to their own and others’ expectations.

I seem a bit of a control freak, I want everything to be worked out before I decide to do a certain thing, you know, I want everything to be fairly straightforward and I mean, you can’t, in a way, you can’t live life like that, and yet I still want to live life like that, do you know what I mean? . . . it’s about the stress, erm having faith or taking this, stepping out of your comfort zone, whatever you want to call it, yeah[.] Participant 17 (other, schizophrenia)

Having choices and opportunities was also important to quality of life. As with the review, choice was particularly associated with having sufficient finances, which in turn was often linked with the availability of suitable employment. However, the opportunity of employment, or at least employment that was not demeaning to their values and expectations, was something they felt was denied, often due to perceived and experienced discrimination. Not having money meant they did not have the opportunity to pursue those things that could improve their lives in ways that were related to leisure activities, their environment or their physical and mental health care. Our interviews also showed how having choices and opportunities was cumulative, with one leading to another.

I ended up going to the halfway house [gives name] at halfway homes they had lots of opportunities . . . they were brilliant because they there was a pot of money every month that they could spend I mean I learnt to drive through that . . . it would encourage you and enable you to do these life things so I did driving, somebody else did fishing . . . I don’t think they have a training budget now which is a bit of shame because it opened my life to lots of things. I went on courses . . . I got the money for the driving, knowing that I could drive triggered off other things for me and I did get benefits at that point which allowed me a little bit more to do these things . . . So that’s how my life got built by having guidance and opportunities really . . . and I think that’s a big thing isn’t it, there’s not all the opportunities there and stuff[.] Participant 1 (CMHT, depression/eating disorder)

Because it was difficult to find suitable work, and because of the stresses that employment entailed, some participants chose the safety of remaining on benefits. Some preferred to do voluntary work instead, which provided them with the benefits linked to employment, apart from financial, but with more flexibility and control to protect themselves from becoming ill.

Relationships and belonging

Within the review, ‘belonging’ was defined as having two dimensions: ‘valued involvement’, the experience of feeling valued, needed and accepted, and ‘fit’, the person’s perception that his or her characteristics complemented the environment they lived in. 201 The focus was on how well people perceived they fitted with society. The importance of a sense of belonging was also present in our interviews. In contrast to the review, our interviewees also felt that society did not fit with them. This was expressed as a dilemma about whether or not they wished to be part of a society that they felt had different values to their own. This sense of being ‘alien’ to society was something expressed by those with severe depression and schizotypal disorders. Those with mild to moderate anxiety/depression expressed feelings of being isolated from society but not that they did not belong to it.

I have feelings of err not belonging to the human race, like I feel very – it’s not an outcast, I just don’t feel a connection. I don’t know how else to describe that, it’s like being an alien, that is the only way I can describe it, and I know that that sounds weird but that is the only way that I can describe the feeling of it . . . I don’t cope with most people [sighs] I – [pause] my values and norms are very important to me and I know that everybody has not got the same ones[.] Participant 4 (CMHT, depression/anxiety)

Similar to the review, there was an expression of a desire to do ‘normal’ things or to return to a normal self, particularly for those who had experienced a traumatic event. However, in contrast to the review, our interviewees communicated a sense of being different, rather than abnormal.

You know, you will not make any sense to ’em with voices or whatever you want to call them, bouncing around your head, because then that fires my, you know, it fires my imagination, but I’m talking to people that aren’t, kind of, a bit oddball or a bit, kind of, you know, a lot of people are really, kind of, straight and they’re not strange enough, you know, they don’t – I look at things and, kind of, from a certain angle, a lot of people don’t, and likewise for them, they’ll just think I’m f*****g mad or, you know, dark or depressing, which I can be, but, it’s like gallows humour, you know[.] Participant 14 (CMHT, schizoaffective disorder)

Stigma was a strong theme in the review and though present in our interviews, was disclosed primarily by those with problems related to gender identity and schizophrenia, particularly related to employment opportunities. Stigmatisation was less of a problem for those with anxiety and depression.

Rather, a need for a better understanding of the impact of mental health problems was expressed by interviewees with all diagnoses and severities of illness. This lack of understanding resulted in them not receiving the support they needed and a feeling of not being able to talk to people about their problems.

Interviewer: Thinking of quality of life – what would have improved things for you at the time.

Interviewee: Well, more understanding from people in authority, like the council, by helping people that have got problems that need the help . . . I find a lot of people don’t understand depression and they don’t understand the way it affects people and, you know, I’ve had many people say to me, ‘oh you’re stupid, you just pull yourself together’, but they don’t understand the way it affects people, you know.

Participant 15 (IAPT, depression)

The review identified the importance of good quality relationships. These satisfied a need for support, love, care and affection, and a need to have someone they could trust and confide in, who accepts and understands them, and with whom they could experience fun and happiness. These themes were also identified in our interviews. Similarly, our interviews revealed that, particularly for those with severe and enduring mental health problems, there were difficulties forming and maintaining close, family and social relationships. The relationships that could fulfil these desired needs felt out of reach, which had a reciprocal effect on subjective well-being and self-perception. These interviewees tended to live alone with care and support provided by their mental health worker only.

I alienate myself because I don’t share. I have to take responsibility for that, but I can’t – without sharing they don’t understand why I don’t share, it’s a bit of a vicious circle. But to have that trust to share, is quite difficult for me, but, of course it is, it is not going to be easy, it takes a long time for me to be friends or something with anybody really . . . [name] from [name] she helps me a lot she is from an organisation to support people with mental health issues to do everyday things to encourage you to go out and things like that, and without [name] I think I would go insane. I only see her once a week or once a fortnight but she does understand me[.] Participant 4 (CMHT, depression/anxiety)

In contrast, interviewees who tended to have less severe or relatively short-term problems had difficulties associated with current relationships that affected their quality of life, but these difficulties were less profound. They did not express any difficulties in their abilities to form new relationships and spoke of the support received from other family and friends.

Not evident in the review was the way in which people made negative and positive comparisons with others in order to evaluate their own quality of life. In our interviews, envious comparisons were made with people in the interviewee's immediate family or social circle. On the other hand, positive comparisons tended to be made with remote referents, people who were less fortunate than themselves with whom they might rarely come into contact. For some interviewees there was an internal struggle between the two.

I think ‘oh everybody’s at me and they’re all paired off and I haven’t got my mother and dad and everybody’s, all the world’s got a mother and dad’ even though they haven’t and then I say ‘well my sister hasn’t got a mother and dad’ she’s only same as me but she’s got a good husband, and he is a good husband. And then I say I’ve got a sister, I’ve got a brother-in-law as well . . . and I thought you know ‘pull your bloody self together, at least you’ve got legs that work to moan at, there’s some people sat in a wheelchair’ . . . and so I know I’m lucky it’s just, [sighs] oh I don’t know[.] Participant 9 (IAPT, depression)

Activity and functioning

The findings related to activity from both the review and our interviews were very similar – that leisure and work activity had a positive effect on subjective and psychological well-being, was enjoyable, engendered a sense of belonging through social interaction, and generated feelings of self-worth, pride and a sense of achievement. Importantly, it also provided the income often needed to take part in activities that are pleasurable and aid recovery.

I went on a year’s course at engineering and I was absolutely scared about going on that, but I did it and I did it, you know, quite well . . . and at that time, I was really happy in my life and I thought well I’ve done something, I’ve achieved something here doing this . . . I think [I was happy] because I had the drive and a purpose of getting up and going out every morning and doing what, you know, normal people do, sort of thing, you know, I got into a routine which was very good, so I was happy and more stable . . . I just felt a little bit more worthwhile, you know. I don’t like to feel useless . . . I’ve missed the banter I think as well, as part of being a team, or even on your own or whatever, I miss the camaraderie[.] Participant 10 (IAPT, anxiety/panic attacks)

Again, similar to the review, our interviews also revealed that when no enjoyment could be found from activity, it still had the benefit of providing a structure and routine to the day, relieved boredom, kept the mind active and – as expressed by many as being of particular importance – provided a distraction from problems.

[After feeling suicidal] my interest in things started coming back it has made a lot of difference because it meant that I was able to distract myself to a certain extent . . . so I was grateful that that came back a bit, rather than just being completely immersed in this world of depression, at least I got a few minutes out of, you know, it was just a few minutes at a time, but it gradually built up to the longer periods where I could go back on the computer again or I could say watch EastEnders, whereas I just completely lost interest, so that was one thing that improved[.] Participant 13 (CMHT, depression)

Also consistent with the review was the finding that in certain circumstances activity could be detrimental to quality of life. This occurred when the activity, usually employment, felt beyond their capabilities. Reasons given for this were stress and anxiety related to pressure of work, problems concentrating, difficulties with social interaction and the exacerbation of other mental health symptoms.

. . . they systematically bullied me, unbeknown to me, I didn’t even realise because I was that stressed and sort of, out of it, my work life balance doesn’t work very well, I don’t tend to put myself first, and therefore I get iller and iller whilst enabling other people at the end of it I went off sick because I wasn’t sleeping at all, I developed symptoms of erm – it’s what I called jelly brain, and it’s when you turn your head it feels like your brain is slowly turning, even though your head has already turned, it is a very strange sensation, and it’s a sleep deprivation sign. Erm, but obviously I was still awake because of all the anxiety, it was the anxiety that usually kept me going. Participant 4 (CMHT, depression)

Our interviews highlighted an additional issue around the dilemma people faced when choosing between short- and long-term quality of life: they could foresee the potential long-term benefits of taking part or resuming activities they previously enjoyed, but often found the prospect of doing so too daunting in the short term. The fear that their mental health and well-being might deteriorate further seemed to take priority over the potential for more long-term life benefits – ‘I’d like to but I can’t’.

. . . what the psychiatrists advocate is a relatively low stress environment, that’s how I keep my mental health on an even – you know, my mental health healthy as it were . . . part of me thinks that perhaps if I could do a job where even if it was just cleaning, and if I could, in a way, confront stress to a certain extent, be more, you know . . . I think to a certain extent, it would probably be a bit more healthy to have a bit more in my life, if you know what I mean[.] Participant 1 (other, schizophrenia)

Our interviews also revealed some differences associated with the severity of mental health problems. Those with severe problems and who appeared most distressed at the time of interview reported finding little enjoyment in any activity, often due to an inability to concentrate. Difficulties with basic functioning and lack of self-care were reported as demonstrating a lack of interest in life itself, as was taking part in particularly risky activity, which was communicated by one participant as an illustration that she did not care whether she lived or died.

I don’t look after myself, I’m not interested in myself . . . I’m not! I’m just not interested in myself I don’t care if I am not here today gone tomorrow, I am not bothered[.] Participant 8 (CMHT, PTSD)

In contrast, those with less severe problems spoke of leisure activities and hobbies they enjoyed when asked what improved their quality of life. These were often lone activities as, although social activities were described as potentially the most enjoyable, those activities that involved social contact appeared to be the first to diminish as problems worsened.

Hope and hopelessness

The review showed how important a positive view of the future was to quality of life. This involved having goals and aspirations, and being involved in activities that were fulfilling and had meaning and purpose. These were necessary in order to instigate change and have hope for a better future. This was also evident in our interviews, with some further insight into how difficult this was for some, particularly those with severe and enduring mental health problems.

I think whereas I was feeling completely hopeless that things would never change and I would be stuck like this for ever, and just the desperation for things to end or things to change, she just gave me that little bit of hope that things would change . . . eventually I came round to their way of thinking and it gave me hope that at least I could hang on for just a bit longer to see what happens and to see if things would change[.] Participant 13 (CMHT, depression/affective personality disorder)

There were noticeable differences between our interviewees in how they viewed the future. This could be related to their expected level of achievement before they became ill and whether or not they felt that was something they could return to, given time.

The most negative outlook and evidently poorest quality of life was reported by those for whom previous attempts at positive action to change their situation had failed, and coping mechanisms they previously drew upon no longer had an effect. As a result, they could not conceive of their situation changing in the future.

. . . why carry on, what with my head f****d, and the pain, oh do you know, I just, I really have to ask myself, really why do I carry on . . . It is really difficult to justify yourself at night, at 3 o’clock in the morning, why are you putting up with all this, and why you just don’t commit suicide to be honest because, I don’t know, it’s just really quite exhausting, I am going to the gym to help with my back and stuff like that, but it hasn’t, but my blood pressure has come down. Hurrah! [cynically] after 3 bloody years[.] Participant 4 (CMHT, depression/anxiety)

In the review, the emphasis was on the negative concept of hopelessness as related above. A more positive outlook tended to be expressed by our interviewees referred via the primary care services who had less severe and/or relatively short-lived mental health problems. In contrast to a perception that things were unlikely to change, they were more likely to talk about having goals and plans in place which they were actively working towards, however difficult. They were also more likely to compare themselves positively with others. Religion also provided solace for some. However, this optimism may in some respect have been due to these participants being recruited through a service specialising in cognitive behavioural therapy interventions which focus on goal setting and positive thinking techniques.

I think that I have turned the corner I’ve settled down even though I probably might be on my own now, but I’ll have to wait and see about that . . . alright I have got problems, but there are people worse off than I am, they have got more problems than me and if some people can do it I think I should be able to do it myself[.] Participant 3 (IAPT, depression/anger)

• Content validity of EQ-5D, SF-36 and ICECAP-A

Content validity is the extent to which the items of the EQ-5D and SF-36 (and the SF-6D) reflect the content of the domains of interest identified by the qualitative research. This research has provided a depth of understanding that is rarely possible with conventional psychometric techniques. It has identified seven themes that were important to people with mental health problems. In this section we return to the main aim of this project, which is to examine the validity of the EQ-5D and SF-36. This is achieved by using the seven themes identified in the qualitative research to assess the extent to which these two measures comprehensively cover them.

A key criticism of the EQ-5D and SF-36 is that they have been designed by researchers with little or no input from people with the relevant health problems. As a result, it has been suggested that these measures are too focused on physical health-related problems and so exclude potentially important mental health-related quality of life. 11 , 12 Patient-reported measures are being increasingly developed from interviews with the relevant populations and this is in line with guidance in the academic literature 56 and some policy-makers. 58 A recent example of this is a new generic instrument called ICECAP-A 40 which, the authors claim, can measure capabilities. A key feature of this instrument is that the content is based on the results of a qualitative analysis of semistructured interviews with members of the general public. The resultant classification system is less focused on physical health and functioning, and instead takes a higher-level and broader view of the constituents of quality of life. It covers five dimensions: feeling settled and secure; love, friendship and support; being independent; achievement and progress; and enjoyment and pleasure. The ICECAP-A was not available at the development stage of this project and there are no relevant data for undertaking quantitative psychometric analysis for this group of people. However, it became apparent during the research that the ICECAP-A has similarities to the emergent themes and provides a broader descriptive system that is potentially more relevant to mental health populations. It was therefore decided to include it in this assessment of content validity. The review of the content of these three instruments against the seven themes is summarised in Tables 25 – 31 .

Summary of subjective well-being/ill-being and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of physical health and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of activity and functioning and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of social well-being – relationships/belonging and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of self-perception and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of control, autonomy and choice and a content validation of the EQ-5D, SF-36 and ICECAP-A

Summary of hope and hopelessness and a content validation of the EQ-5D, SF-36 and ICECAP-A

The content of the EQ-5D was presented in Table 1 . As shown in Tables 25 – 31 there is only a modest amount of overlap between the EQ-5D and the seven themes.

Well-being and ill-being

The anxiety and depression dimensions of the EQ-5D may reflect the important aspects of ill-being of depressive mood and fear and anxiety, and this is reflected in the psychometric evidence (see Chapter 2 ). However, the qualitative evidence would suggest that these two elements are different in terms of the impact they have on the lives of sufferers: namely, that depression was identified as being an order of magnitude worse due to its all-consuming and long-lasting nature. In contrast, experiences of fear and anxiety tended to be shorter term. It is therefore important to separate these into two dimensions. Depressive mood is associated with low energy, poor concentration and poor motivation, which are not really directly covered by this dimension. Symptoms of psychosis that have important and distinctive implications for quality of life are not measured. Finally, the EQ-5D is concerned with negative aspects of these themes and so excludes the positive counterparts such as happiness and enjoyment or feeling calm and peaceful.

Usual activities is a rather crude and generic dimension that covers aspects of activity in a limited way. People limited in their activities by their mental health condition may report a problem on this dimension. However, this does not allow for the negative side of activity highlighted as an issue in the qualitative work. People with mental health problems often find that activity can have a negative as well as a positive impact.

Social well-being – relationships and belonging

Usual activities may again be seen as a catch-all dimension that covers some aspects of this theme. However, it provides no information on the consequences. Relationships can be those with close friends and family through to social relationships with colleagues, volunteers and neighbours. They can be supportive and enjoyable, or they can be stressful or a source of rejection and stigmatisation. The concept of usual activities also fails to capture a sense of belonging to society.

The EQ-5D has content to cover key aspects of physical functioning related to mobility, self-care, usual activities and pain. These four dimensions have been shown to be valid in many common physical health problems, but research has found that some consequences of physical ill health are not reflected in the EQ-5D, such as those resulting from poor vision. 236

This leaves the themes of control, autonomy and choice , self-perception and hope/hopelessness , which are only addressed through mobility and self-care that indirectly contribute to a person’s ability to be independent. However, this does not include the more psychological components of this theme.

The SF-36 covers more emotional aspects of health than the EQ-5D by including mental health, role limitations due to emotional problems, vitality and aspects of general health (see Table 2 ). This is reflected in the results in Tables 25 – 31 .

Subjective well-being/ill-being

The mental health dimension of the SF-36 has five items covering depression (e.g. feeling downhearted and low), anxiety (e.g. being a nervous person) and positive affect (‘have you been a happy person’ and ‘feeling calm and peaceful’). The vitality dimension covers positive (e.g. ‘feeling full of life’) and negative energy (e.g. ‘did you feel worn out’). On the face of it, the content of this instrument would seem to cover most aspects of well-being and ill-being. One omission is concentration, though this is partly covered in role limitation due to emotional problems (i.e. ‘did not do work or other activities as carefully as usual’). Another is psychosis-related symptoms (e.g. hearing critical voices), though the extent to which this should be in a measure of quality of life is debatable.

Role limitation due to emotional problems in the SF-36 would appear to cover this theme (i.e. ‘cut down on the amount of time you spent on work or other activities’, ‘accomplished less than you would like’, ‘didn’t do work or other activities as carefully as usual’). However, this dimension does not consider the levels of stress from activities found to be important to people with mental health problems.

Social well-being – relationships/belonging

There are two social functioning items in the SF-36: ‘has your health limited your social activities (like visiting friends or close relatives)’ and ‘to what extent has your physical health or emotional problems interfered with your normal social activities with families, friends, neighbours or groups’. The focus on the way in which health impacts on social activities, through the general terms of ’limited’ and ’interfered’, should cover some aspects of this theme, but does not capture all issues discussed by participants, such as deep feelings of alienation or stigma, nor the responses of others. It also fails to incorporate the sense of belonging. In other words, this SF-36 dimension is less able to reflect the psychological consequences of social activities.

This theme overlaps with the depressive mood subtheme under the well-being/ill-being theme, and to that extent feelings of hopelessness may be partly covered by items like ‘feeling down in the dumps all the time’. The notion of hopelessness is also partly reflected in the general health perception item of ‘I expect my health to get worse’. However, the overall feeling of hope and having goals to aspire to is not captured by the SF-36.

The themes of self-perception and control, autonomy and choice are not covered by the content of the SF-36. As for the EQ-5D, the items in physical functioning will be related to independence.

The preference-based SF-6D is derived from the SF-36 and so shares much of the same content. However, there are some important differences owing to the fact that it contains only a subset of 11 of the 36 items (see Table 3 ). The SF-6D does not cover general health perception and this means that it does not have any item for tapping the hope and hopelessness theme. It combines role limitation due to emotional problems with that due to physical problems. In addition, the SF-6D does not cover positive affect or negative energy (i.e. tiredness).

ICECAP-A is a classification like the EQ-5D with a single item per dimension. The five dimensions are feeling settled and secure; love, friendship and support; being independent; achievement and progress; and enjoyment and pleasure. The content of this instrument would seem from the summary in Tables 25 – 31 to be more closely aligned with the themes identified from qualitative work, and to some extent this is reassuring as they are based on a similar qualitative approach. The main difference is that the ICECAP-A was based on interviews with members of the general public rather than those with mental health problems.

The main observation for this theme and the others is that the ICECAP-A only considers the positive aspects of the themes. Two dimensions are related to this theme, one for depressive mood (i.e. ‘I can have XX of enjoyment and pleasure’) and the other for fear and anxiety (‘I am able to feel settled and secure in all areas of my life’). Although it is important to cover positive aspects, the findings from qualitative research in people with mental health problems is that those with more severe problems do not talk about enjoyment and pleasure, but rather focus on the negative aspects of well-being. The best they hoped for was the absence of depression. Only in those with mild to moderate problems were these positive aspects raised in the interviews. Well-being is part of a spectrum and so to exclude ill-being is likely to result in floor effects (i.e. respondents clustering at the lowest level). ICECAP-A also does not assess the positive or negative components of energy.

None of the dimensions of ICECAP-A seem to cover this theme.

The dimension of love, friendship and support captures this theme better than either of the generic measures, the EQ-5D and SF-6D. However, again ICECAP-A fails to cover the negative aspects of relationships including rejection and stigmatisation and feelings of loneliness and alienation. For people with mental health problems, these consequences are an important part of their experience. It also does not capture the sense of belonging and being part of society.

ICECAP-A does not cover most of the issues raised under this theme, such as self-identity, self-acceptance and self-stigma. It may capture aspects of the positive side to self-efficacy and self-esteem in the achievement and progress dimension (i.e. ‘I can achieve and progress in all aspects of my life’), though this dimension fits better with hope and hopelessness.

Control, autonomy and choice

This is another theme where ICECAP-A provides a better match than the generic measures of health through the dimension of ‘being independent’ (‘I am able to be XXX independent’). The wording is based around the ability to be independent and so allows for respondents to say they could be independent but choose not to be. However, it does not include aspects of control nor choice more generally.

The notion of hope is captured by the dimension ‘achievement and progress’ (‘I can achieve and progress in all aspects of my life’). Interviewees reported that having dreams and goals gave meaning and purpose in life. The worst level in this dimension is ‘I cannot achieve and progress in any aspect of my life’, but this may not capture the very low levels of hopelessness reported in the interviews, with some respondents indicating that life would never change for the better. To confirm this would require psychometric evidence to establish the extent of any floor effects and whether or not it is able to discriminate those with the most severe mental health problems.

By way of contrast with the generic measures of health, ICECAP-A does not contain items that directly assess aspects of physical health. This was raised in the interviews by participants who reported mental health problems to be associated with physical manifestations, and there were interactions with physical comorbidities. It could be claimed that the impact of these physical health problems is captured by the higher-level domains of the ICECAP-A instrument. However, this requires further psychometric evidence.

The primary research reported in this chapter builds upon a review of qualitative studies reported in Chapter 5 . The aim of the research was to further examine the views of people with mental health problems on what is important to quality of life. We undertook a qualitative study of face-to-face semistructured interviews with current users of mental health services. Participants were primarily recruited from three mental health services in the north of England. One (IAPT) provided psychological therapies for people suffering from mild to moderate depression and anxiety. The other two were CMHTs providing services for those with more severe problems, one working with individuals with severe and complex non-psychotic disorders (e.g. severe depression, PTSD, personality disorder) and the other with those with psychotic disorders (e.g. schizophrenia, bipolar disorder). This expanded the scope of diagnosis and severity of illness covered in the review to include people with affective and anxiety disorders as well as people with psychosis-related disorders. The seven themes to emerge from this qualitative work have been used to assess the content validity of the EQ-5D and SF-36. Below we summarise the findings from the interviews and compare and contrast them with those from the review. We address the limitations of this part of the study and summarise the implications for the generic measures examined in this report.

Summary of findings

Our review and synthesis of qualitative research studies undertaken with people with mental health problems, reported in the previous chapter, identified six domains of quality of life: well-being and ill-being; control, autonomy and choice; self-perception; belonging; activity; and hope and hopelessness. Despite widening the types and severities of mental health problems studied, we found our interview data fitted well with the themes from the review; any differences tended to be within the themes and related to the degree of impact of the themes on different levels of severity, chronicity and diagnosis. With some exceptions, those with severe chronic difficulties were more likely to talk about losses and what took quality away from life, whereas those with moderate or relatively short-lived problems spoke of the things that added quality to life. The EQ-5D and SF-36 were found to have only a modest overlap with the seven themes identified from the research, and though the ICECAP-A had better overlap, it only considers the positive end of the spectrum.

Importance of physical health

The interviews identified more of the impact of physical health conditions which interacted with mental health problems and made people’s life situations much worse and difficult to cope with. This may have been less of an issue in the review as it excluded studies in which participants had major physical health comorbidities. As a result, physical health makes an important additional major theme, as opposed to a minor subtheme in the review. It also means that any measure of HRQoL for use in people with mental health problems should include domains on physical health.

The spectrum from ill-being to well-being

Consistent with the review, we found that the distress related to symptoms is integral to quality of life for those suffering from mental health problems. This indicates that symptomology and quality of life are not separate entities, and consideration should be given to the inclusion of symptoms in quality of life assessment. Our interviews revealed differences in the emphasis placed on distress between those with severe and enduring, and those with mild to moderate, problems. The former tended to be at the negative end of the well-being/ill-being spectrum, where quality of life was perceived as an absence of distressing feelings and emotions. This priority of a reduction in the symptoms of mental health is consistent with other studies 237 where the desired outcome of people with functional mental illness was to feel less anxious or depressed. In contrast, those with moderate and relatively short-lived problems did speak of happiness and enjoyment with a greater expectation of achieving this. This is consistent with evidence indicating that positive and negative affects play an independent role in health outcomes, and that quality-of-life assessment should be bipolar, consisting of the independent dimensions of negative and positive well-being. 238 , 239 The shift in focus of mental health services away from mental illness and towards mental health over recent years is commendable. However, people still enter these services with suicidal feelings, and a change from feeling suicidal to non-suicidal is an important change in quality of life that needs to be considered in outcome measurement.

Additionally, our interviewees said that depression had a greater impact on quality of life than other mental health problems. This suggests that anxiety and depression should be treated as separate items rather than combined as they are currently in the EQ-5D and SF-36. In their research, Headey et al. 240 concluded that four dimensions of well-being should be distinguished: life satisfaction, positive affect, anxiety and depression. They found that life satisfaction was negatively correlated with the distress dimension of depression, but there was no association between life satisfaction and anxiety; people could be both satisfied with life and anxious.

Subjective versus psychological well-being

There are strong arguments that hedonic well-being in terms of pleasure, enjoyment and satisfaction is insufficient for a good quality of life. 29 Also crucial is human potential, or eudaemonic well-being, 241 and self-actualisation, 242 which considers how satisfied people are with their lives. This differentiation also has parallels in the study of subjective and psychological well-being. 243 The concept of psychological well-being extends subjective well-being beyond happiness and positive affect, 243 , 244 suggesting a multidimensional model of psychological well-being consisting of six dimensions: self-acceptance, environmental mastery, autonomy, positive relations with others, purpose in life and personal growth. The initial three concepts are not dissimilar to our themes of self-perception, autonomy, control and choice, relationships and belonging. Furthermore, meaning and purpose is one of the main components of our theme of activity. One difference is that this literature is primarily concerned with what makes a good life and what adds quality to life, whereas for many of our interviewees, quality of life was expressed in terms of what took quality away from life.

An easier, restricted life or a stressful, fuller life?

For those with more severe and enduring problems such as long-term depression, PTSD and schizophrenia, there was an acknowledgement that a lack of self-worth and confidence was preventing them from doing things that might improve their quality of life, and that this was difficult to overcome. For some, life was easier if they were able, or allowed, to stay within their own comfort zone. This might mean choosing to remain on state benefits rather than risk the stresses of employment, despite an acknowledgement of the benefits employment could bring to quality of life, such as self-esteem, social engagement and improved finances. This was one of the common threads throughout our research on the views of people with mental health problems, which we alluded to in the review and which became more explicit in the interviews. There was a conflict and dilemma between short-term well-being and other aspects of quality of life. Our interviewees expressed how they engaged in negative coping strategies, such as avoiding things that made them feel anxious, but at the same time these strategies stopped them doing those things that might ultimately enhance their quality of life. This is consistent with research indicating that certain aspects of positive functioning, such as the realisation of one’s goals and purposes, require effort and discipline that may well be at odds with short-term happiness. 245 This seemed to be all the more so for those with serious mental health problems, for whom added stress could exacerbate or induce other mental health symptoms (e.g. hearing voices). It was difficult for some of our interviewees to decide which was more important to quality of life – a restricted life, free from anxiety and stress, or a fuller life which involved negotiating barriers, anxiety and stress and the risk of exacerbating other aspects of their mental illness.

Capabilities approach

Both the review and interviews revealed how a lack of choice and opportunity prevented people with mental health problems from reaching their potential, particularly in the field of employment. The concept of choice is an important aspect of the capabilities approach to quality of life. A person has a set of ‘functionings’ which refer to what a person can ‘do’ or can ‘be’, the relative importance of which are assessed by the person him or herself. Whether or not a person is capable and can benefit from these ‘functionings’ is determined by the choices and opportunities available to him or her. Many of our interviewees were well educated and once had aspirations of successful careers. However, opportunities were often denied, either due to the limitations imposed upon them as a result of their mental health difficulties or due to both actual and perceived discrimination, particularly in the workplace. So where some were once considering careers as bankers, lawyers or writers (as stated by our interviewees), they were now deliberating whether or not they would be capable of a full-time job stacking shelves or cleaning. Not being able to live up to their own and others’ expectations could have a cumulative effect on subjective and psychological well-being, which in turn made it harder to cope and change their situation. Added to this is a lack of understanding of their problems, both by the people close to them and society at large, and a consequential lack of support and other resources. This was a problem for some of our interviewees more than others, and particularly for those with psychosis-related disorders and severe depression. Those with less severe problems had current difficulties fulfilling their potential but tended to feel it would be something they could potentially regain once they recovered.

The importance of relationships

Understanding and support is an important component of good-quality relationships. The importance of good relationships, and also the effects of poor relationships, was a theme that ran throughout our interviews and was expressed by people with different types and severities of illness. Those with severe and enduring problems were more likely to speak of the damage that had been a result of poor relationships in the past and which, in turn, affected their potential for fulfilling relationships in the future. Avoidance of damaging relationships, usually within the family, improved quality of life. Those with less severe problems had difficulties with specific relationships but those problems were less profound, and they were more likely to speak of the benefits of the positive relationships in their lives. This was reflected in a sense of being alienated from society for those with severe difficulties, which was not expressed by those invited to our research via the primary care service, perhaps because it was something that was taken for granted. The importance of relationships is reflected in the inclusion of this theme in the majority of quality-of-life models, including needs based, psychological, social health and cohesion, environmental and objective social indicators. 239

Is quality of life different from recovery?

As already described (see Chapter 5 , Discussion ), our domains closely match those of a recent review of the ‘personal recovery’ literature which was released after we had completed the analysis of the review studies. 233 Personal recovery could therefore be regarded as a further model of quality of life in addition to those outlined in Chapter 1 . Importantly, both our research and that into personal recovery are based on the voices of people with mental health problems.

How does this help us to understand the quantitative findings?

The psychometric evidence presented a mixed picture, with the EQ-5D and SF-36 apparently achieving a satisfactory level of performance in depression, and to a lesser extent in anxiety and personality disorder. However, the evidence was clear for schizophrenia and bipolar disorder, and there was a suggestion that, even in these conditions, these crude quantitative tests were actually picking up differences in depression. The range of themes identified in the synthesis reported in the last chapter and the interviews reported here provides some insight into the problem. Essentially, both generic measures, and particularly the EQ-5D, are focused on physical health and functioning and seem to miss large areas of mental health-related quality of life mentioned by the interviewees. What the participants spoke about was closer to the quality-of-life models described in Chapter 1 than the narrow dimensions that form the content of these generic measures. The extent of this mismatch of content has been detailed above. This would seem to account for the mixed results, as large elements of the lives of these people that are affected by their mental health problems are not assessed.

Strengths and limitations

One of the primary aims of the interview research was to ascertain what was important to quality of life for people with a wider range of mental health disorders and levels of severity than was available within the review. To a large extent we achieved this, with interviews being undertaken with people recruited from primary and secondary services catering to the needs of people with severe and enduring problems and mild to moderate anxiety and depression. However, despite attempts, we did not receive any referrals from these services of women with psychosis-related disorders, or people with obsessive compulsive disorder. Our findings may not, therefore, be inclusive of their views. There was also an over-representation of referrals from one member of the CMHT who was a nurse. Although we are unaware of any biases that may have been introduced as a result of this, it is possible that the perspective of those being seen by a nurse in the team could be different from those whose key worker was a psychologist, occupational therapist, etc. Finally, we had hoped that practitioners would introduce the possibility of taking part in the research to all their current clients and would let them decide whether they felt able, or wished, to be interviewed. However, the number of referrals received strongly suggests that service providers acted as gatekeepers and the voices of all types of service users were not necessarily included. The implication is that further interview work could be undertaken to address these gaps.

Conclusions

The review and synthesis of qualitative research undertaken with people with mental health problems, and the interviews reported in this chapter, have together identified seven domains of quality of life: well-being and ill-being; control, autonomy and choice; self-perception; relationships and belonging; activity; hope and hopelessness; and physical health. It is important that these domains are addressed in some way in quality-of-life measures. People enter mental health services with varying degrees of distress and chronicity, and as our research shows, recovery can be a long and difficult process. However, people may perceive large improvements in their quality of life without registering on the positive end of any quality-of-life scale, although undoubtedly this should be the aim. It is therefore necessary that the full spectrum of negative through to positive aspects of each domain is included within quality-of-life measures. The EQ-5D and the SF-36 and its derivatives were found not to cover large elements of the seven themes identified by the research, and this calls into question the content validity of these measures for large parts of the population with mental health problems.

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• Cite this Page Brazier J, Connell J, Papaioannou D, et al. A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures. Southampton (UK): NIHR Journals Library; 2014 May. (Health Technology Assessment, No. 18.34.) Chapter 6, A qualitative analysis of interviews with mental health service users.
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