Family Practice Vol. 20, No. 5, 508-513
© Oxford University Press 2003
The consultation |
Satisfaction with primary care: the perspectives of people with schizophrenia
Department of Primary Care and General Practice, Medical School, University of Birmingham, Edgbaston, Birmingham B15 2TT and
a Department of Sociology, University of Warwick, Coventry CV4 7A1, UK.
Correspondence to Dr Helen Lester; E-mail: H.E.Lester{at}bham.ac.uk
Lester H, Tritter JQ and England E. Satisfaction with primary care: the perspectives of people with schizophrenia. Family Practice 2003; 20: 508–513.
Received 25 November 2002; Revised 8 April 2003; Accepted 19 May 2003.
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Abstract |
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Background. Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought.
Objectives. This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia.
Method. A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000.
Results. Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor–patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery.
Conclusion. Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.
Keywords. Primary care, recovery, satisfaction, schizophrenia, stereotypes.
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Introduction |
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Schizophrenia is the most common and serious enduring mental illness in the UK. One in 100 people will develop schizophrenia in their lifetime. The closure of asylums and rise of community care have resulted in most patients with schizophrenia registering with a GP, and >30% now receive their health care solely from primary care.1 This has a number of implications for primary care teams since patients with schizophrenia consult twice as often as patients without schizophrenia.2 They are also likely to be in contact with primary care services for a longer cumulative time than patients without mental health problems. Patients with schizophrenia are also more likely to have poorer physical health and double the mortality rate of the general population.3
There has been little previous work exploring satisfaction with primary care for people with schizophrenia. This seems a curious gap in the evidence base in light of the potential workload, patient morbidity, relationship between satisfaction and adherence and clinical outcomes,4 and the increasing Department of Health stress on user involvement and patient choice in health care.5 Previous studies in this area of health care have used predominantly structured questionnaires, and concentrated on structural and technical aspects of care, often using professionally defined outcome measures.1 Far fewer studies have addressed interpersonal aspects of care or used qualitative methodologies that are better able to access complex views in depth.6 This study therefore aimed to explore the concept of satisfaction with primary care from the perspectives of people with schizophrenia using a qualitative methodology.
North and West Birmingham ethics committee approval was obtained for the study.
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Method |
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A total of 202 patients with schizophrenia (ICD-10 classification criteria F20) and receiving shared care with secondary care community services were identified from caseloads of teams in the six North Birmingham Community Mental Health Localities. This sampling framework was used in a randomized controlled trial to evaluate the effectiveness of a patient-held medical record which took place during the same time period as this study.7 Exclusion criteria were learning disability (ICD-10 = F70), organic brain disease (ICD-10 = F0–9), current hospitalization and being under 18 years of age.
At the initial visit, demographic variables were collected and patients completed the Verona Service Satisfaction Scale (VSSS-54).8 The 202 VSSS-54 questionnaires were entered into an Access 7 database, and the distribution of the scores of the individual questionnaires calculated. Random sampling was then employed within each quartile of the VSSS-54 scores to identify patients representing a range of satisfaction scores in relation to community mental health services, who were then approached for an interview (see Fig. 1
).
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Semi-structured interviews were carried out by HL, a GP and research fellow at the University of Birmingham, during a pre-arranged visit to the patient’s home or local day centre. HL introduced herself in her University research rather than GP role. The topic guide was derived from a review of existing studies and modified after three pilot interviews, which were not included as part of the study results.
The topics covered in each interview included descriptions of primary care consultations where patients had felt particularly satisfied or dissatisfied, description of the decision-making processes as perceived in the consultation, and views on features of current primary health care that affected satisfaction. All interviews were audio-taped and fully transcribed. Themes were identified and developed by HL and JT from reading and re-reading transcripts, and themes were refined further and clarified using the Framework method.9 Framework is based on a grounded theory inductive approach to data analysis where theories are generated from data. It is heavily based on and driven by the original accounts and observations of the people it is about. It is also systematic and comprehensive and allows a full review of the material collected. Interviews and analysis were conducted concurrently and continued until no new themes emerged and data saturation was complete.
Potential associations between quantitative satisfaction scores and interview themes were explored by additionally thematically charting respondents by VSSS-54 score.10 However, the only relationship between the VSSS-54 score and views expressed in the interviews was that patients with lower (less satisfied) scores in the bottom half of the VSSS-54 distribution were three times more likely to volunteer stories of perceived stereotypical behaviour than those in the top half.
The trustworthiness of the data was enhanced by the transparent process of analysis, and the involvement of two independent researchers who read and compared analytic ideas from the transcripts. Methodological triangulation was used, with satisfaction scores assessed through the VSSSS-54 used as a sampling frame for the qualitative study. Disconfirming evidence was actively sought during the data analysis, and emergent theories were modified in response. All interviewees were also sent a copy of the primary analysis and asked to comment on the themes and concepts. Quotations have been selected on the grounds of representativeness.
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Results |
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Forty-five patients, all of whom had used primary care services on at least one occasion during the preceding 12 months, were interviewed between May 1999 and May 2000. This was more than anticipated and may reflect the relatively short duration of a minority of interviews (15–20 min) where patients had difficulty in concentrating or became restless possibly as a result of the illness or medication. However, it was also interesting to note that all patients approached for an interview agreed to participate, and that the majority expressed surprise that their views on primary care and particularly their satisfaction with care were being sought.
Twenty interviewees (44%) were women, 33 (73%) were Caucasian, 40 (89%) were social class 3/4/5, and 27 (60%) were single. This both reflects the demographic background in the larger trial and is representative of people with schizophrenia receiving shared care1 (see Table 1).
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Five major themes pertinent to satisfaction with primary care emerged from the analysis of the interviews: the ‘exceptional potential’ of the consultation itself; the organization of primary care services; the construction of the user in the doctor–patient relationship; the influence of stereotypes of mental illness; and the importance of hope for recovery.
The ‘exceptional potential’ of each consultation
A number of different elements within the consultation itself were highlighted by a majority of patients as important in terms of patients’ satisfaction with primary care. Many of the elements were related to GP interpersonal competencies such as kindness, patience and an ability to inspire confidence.
"It’s a smile a gesture, perhaps a vocation. I don’t know. I just know he has a warmth about him, a sort of doctor love. I’m not just a serial number with symptoms." M22
The importance of listening to people was highlighted by a third of patients.
"You have to be a good listener to be a good mental health GP. I mean you can’t diagnose by examining the body if there’s a problem with the mind, you have to listen to what they say instead." F42
The empowering value of explanation and information was also emphasized by the majority of patients.
"When I had pains in my chest, she told me what it could be, and um she sent me for a heart trace and then she told me I was OK which was really reassuring." M52
The organization of primary care services
Relative ease of access was a key component of patient satisfaction with primary care. The ability to obtain an emergency appointment and request a home visit were also mentioned by the majority of patients as important features of the organization that had a positive effect on their satisfaction.
"The good ones you know, they tend to have good systems too so you can get to see the GP when you need to easily." M57
The potential for a long-term relationship that helped to ensure continuity of care, where trust could be gradually earned and where the patient was known as an individual, was particularly highly prized. This was often critically compared with the care received in some out-patient clinical settings.
"One of the problems in hospital is that every time you go you see a different doctor and you have to tell your story all over again. I have such a good relationship with my GP, and it’s much better because I don’t have to start from the beginning each time. It’s really quite painful going over the story again and again and it’s much better just to have one person who knows you." F43
"When the consultant told me he was going to take me off my injection because I had come down to such as low dose, I was really worried. But my GP discussed it with me and I felt much better because he said that he would notice if there was any change in me, even if I didn’t notice myself." M42
The emotional pain and ultimate futility of retelling stories and reliving painful experiences with the probability of repetition at the next out-patient appointment were frequent complaints about the secondary care system. Such story telling also reinforced notions of the chronic nature of their illness for some patients.
The construction of the user in the doctor–patient relationship
The majority of patients described their ideal clinical encounter as one where they were treated as equals and were actively involved in decision making about their health care. Involvement in decisions that concerned medication was particularly valued.
"If I am taking tablets, I want to know about them, about the side effects, things like that. I like to know what is going on. I should be part of that decision." F48
"If you went to get a video repaired, you wouldn’t turn round and say I think you should repair it like this, you’d say ‘Well repair it for me’. But I’m not a video, and mental health is more a matter of opinion and so I want more of a say in that." M31
A small minority of patients, most of whom were over 55 years of age, preferred not to be involved in decision making.
"I depend upon my GP. I never want to be involved in decisions." M57
This type of relationship, which could be seen as paternalistic, was, however, acceptable to most patients in the context of a mental health crisis. In this situation, the GP was perceived as being better able to negotiate the medical system.
"Sometimes when you aren’t very well, it’s better for the doctor to make the decisions. Because you can’t always be involved when you’re not very well and not thinking right." F38
There was, however, a notable dissonance between rhetoric and reality; between desired and achieved primary care. As described, the majority of patients from across the age range and with diverse levels of mental health need preferred a shared approach to decision making. However, most reported little experience of influencing the course of their medical care in the primary care consultation. Neither did they expect to. This was demonstrated through their stories of GPs refusing to prescribe newer and more expensive mental health drugs, not altering medication when unacceptable side effects were complained of and using threats of coercion if medication decisions were challenged.
"I felt like a zombie and I didn’t want any more injections and he said they would come to the house and give it to me if I didn’t turn up. So I just kept on having them even though I felt terrible." M57
"He wouldn’t give me the new tablets and I didn’t like to complain because, he was a GP. Anyway, he might have taken my other tablets off me as well." F54
From a social care perspective, difficulties in persuading GPs to fill in social benefit forms such as disability living allowance and battles to renew sick notes were also described by a significant minority of patients. These conflicts were perceived as further examples of their inability to influence the course or outcome of care.
"He said he didn’t think I should be getting sick notes and he wouldn’t give me it. He never did explain why." M41
The influence of stereotypes of mental illness
The majority of patients (54.4%) felt that their satisfaction with primary care was adversely affected when GPs’ behaviour was perceived as reflecting stereotypes of mental illness. The most frequently described stereotypical behaviour was conversations in the consulting room being addressed to other people such as family, friends or key workers. This was perceived by many patients as indicating that the GP felt they were stupid or irrational.
"He talked to my friends and treated me as a child." F34
Some GPs were also perceived as failing to take patients’ concerns seriously.
"He treated me like I was some kind of idiot and he said it was all in my head. If I’d broken my leg then I’m sure he’d have given me a bit more respect." M64
Three patients recalled specific incidents where they felt the GP was scared of them, ending the consultation abruptly by suggesting they find a different GP. This was interpreted by these patients as indicating that the GP felt they were potentially violent.
"I’d just signed on with this new GP um and my papers hadn’t come through so I told him I’d just come out of (hospital) ... and he looked really worried and asked me if I’d been on a section and said he wasn’t sure he could be my doctor and maybe I should find another surgery." M29
Hope for recovery
The majority of patients did not expect to recover in the sense of a complete return to pre-illness personhood. The acknowledgement, however, of the potential to improve and the importance of achievable goals within the constraints of the illness were significant factors in increasing most patients’ satisfaction. A minority of GPs were specifically singled out as inspiring hope for recovery by raising issues such as reducing medication, retraining opportunities and future employment.
"He was great, a really good GP. He didn’t put blocks in my way and say I couldn’t do things. He said, ‘well if you can get the qualifications and you’re well enough then you should go ahead and do it’." M31
"I lost my licence when I became ill and I wanted to get it back, and he said he’d write a letter to Swansea telling them I was much better without me asking him to." M33
Many GPs, however, appeared to perceive schizophrenia as a ‘life sentence’ and emphasized the long-term nature of the medication, often creating a feeling of hopelessness and helplessness for patients.
"I was a bit shocked when he first told me I wasn’t going to get better. Later on he told me I’d be sick for a long long time. I wanted to tell him that I was feeling a bit better." M39
The negative consequences of the diagnosis in societal terms was also vocalized by a minority of patients in the context of living socially isolated and lonely lives.
"Well I’m 36 now, and I don’t really look forward to much. I’d like to think I will get a job or have a family but I don’t think I will. I don’t really have any goals any more. I just live from day to day." M36
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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This study suggests that satisfaction with primary care for patients with schizophrenia is multiply mediated. It adds weight to the findings of previous studies of the particular importance of interpersonal skills in satisfaction in medical encounters,11 and the pervasive influence of stereotypes.12 Our study provides an addition to the literature on satisfaction in terms of the importance of holding hope for recovery for people with schizophrenia.
This study has a number of potential limitations. Although interviewees were sent a copy of the primary analysis and asked to comment on the themes and concepts, few were critical, which may reflect a perceived patient/professional hierarchy or indeed mirror the study finding of a perceived lack of agency. It is also possible that patients in this study had more severe symptoms than patients sampled through practice databases, since previous studies have found that people in contact with secondary mental health teams often have more psychiatric symptoms than those out of specialist contact.1
The curiosity and surprise of patients that greeted most requests to discuss satisfaction with primary care was an unexpected but constant feature of the interview process. Patients felt their views were unimportant to the medical profession. This contrasts with policy imperatives on the importance of user involvement and patient participation in health care.5 Although the majority of patients, particularly those under 55 years of age, wanted to be actively involved in decision making, most reported limited participation in practice. They did not perceive themselves as having any agency in their care but were objects of the critical gaze of health care professionals rather than consumers or survivors of the health care system. This has parallels within the broader medical literature, with, for example, studies on patient preference for involvement in decision making in breast cancer also suggesting a discrepancy between preferred and attained levels of involvement in care.13
The importance of a long-term relationship that encompassed continuity of care, trust and knowledge of the patient in a holistic sense appeared to be key to satisfaction with primary care. This may be particularly important in terms of addressing patient morbidity. Evidence suggests that physical health care is often neglected in patients with schizophrenia14 and that physical symptoms are sometimes attributed to mental health problems. However, a long-term doctor–patient relationship is less likely to be influenced by negative stereotypes which are particularly prevalent in mental health15 and can be based on generating mutual trust and include listening to physical as well as mental health symptoms.
Societal and professional conceptions of the long-term and incurable nature of schizophrenia and the importance to patients of holding hope for some form of recovery was a clear tension in this study as it is in some other areas of health care.16 For some patients, the presentation of hope rather than emphasis on maintaining the status quo was perceived as a ‘turning point’ in the recovery process. GPs who fostered hope by suggesting a future that included retraining or work or learning a new skill were perceived as providing satisfactory primary care. Such an approach may also better equip patients to address the pervasive effects of social exclusion through better employment prospects, financial stability and social contacts.
Implications for policy and practice
The findings of this study have relevance at an individual practitioner, practice, Primary Care Trust (PCT) and policy level. Current government policies addressing issues of social exclusion have particular resonance for mental health service users. The New Deal for Disabled People (NDDP) will, however, need to be strengthened and developed if mental health users are to move from a state of chronic patienthood typified by high unemployment and the poverty trap towards full citizenship. Similarly, the Department of Health emphasis on user and public involvement in PCT decision making will require more than words on a statute book to implement. Mental health user involvement in primary care service development and delivery will depend on issues that are difficult to legislate for such as health professionals understanding, respecting and asking for patients’ views.
The central importance of continuity of care also has implications for the delivery of primary care. It could be argued that workload pressures, exacerbated by policy directives on 48 h access, may mitigate against continuity of care. The proposed introduction of ‘GPs with a special interest’ (GPSIs) may provide one mechanism for ensuring continuity of care. However, given the importance of GP interpersonal qualities, reducing patient choice of GP potentially could also reduce satisfaction with primary care. Such issues need to be considered when the form and function of GPSIs are debated.
Future GP training in this area of health care needs to emphasize the importance of treating patients with schizophrenia not as irrational and passive recipients of care but as co-partners in their illness. Reframing schizophrenia for GPs as an illness with turning points where a form of recovery is possible appears to be an important factor in improving satisfaction with primary care for both patients and providers.
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References |
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