Family Practice Vol. 18, No. 4, 419-424
© Oxford University Press 2001
Consultations involving people with congenital disabilities: factors that help or hinder giving care
Department of General Practice, UMDS, UK.
Dr EH Muir, Department of General Practice and Primary Health Care, Imperial College School of Medicine at the Charing Cross Campus, Reynold's Building, London W6 8RF, UK.
Muir EH and Ogden J. Consultations involving people with congenital disabilities: factors that help or hinder giving care. Family Practice 2001; 18: 419–424.
Received 9 August 1999; Revised 17 November 2000; Accepted 12 January 2001.
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Abstract |
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Background. Previous studies have suggested that the attitudes of health professionals towards people with disability may be as negative as those of society. Further, even positive attitudes may not always be reflected in the health professional's behaviour.
Objective. The aim of this study was to examine GPs' (registrars and trainers) consultations with people who have congenital disabilities and to explore incidents when their attitudes were either matched or not matched with their behaviour.
Methods. A purposeful sample of 19 registrars and trainers participated in a semi-structured interview using the critical incident technique. Subjects were asked to describe encounters from their professional life with a person with a congenital disability, when they either had or had not been able to behave as they wished.
Results. The results indicated that matching or non-matching between attitudes and behaviour was related to three main themes: aspects of the patient such as their appearance, ease of communication and autonomy; aspects of the GP including their management of personal, expert and professional boundaries and the historical context of the consultation including the GP's personal and professional experience, the familiarity between the GP and the patient and the patient's previous experiences of care.
Conclusion. The critical incident technique was found to be a useful tool to gain access into this complex and problematic area and the results raise many issues pertinent to the planning of learning opportunities for both undergraduates and postgraduates.
Keywords. Congenital disability/developmental disability, critical incident technique, general practice/family practice, medical education..
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Introduction |
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Research indicates that the attitudes of health professionals towards people with disabilities are similar to those of the general public and therefore can be equally as negative.1,2 Hospital training may "perpetuate the belief that, if some degree of cure is not possible, then there is ‘nothing to be done’ . . . leading to unease, avoidance and less than optimal care".3 Health professionals have been shown to hold negative stereotypes about both the patient with congenital disabilities (CD) and their carers.4 In addition, the behaviour of health professionals has also been reported as inadequate in terms of the mode of communication used to disclose the original diagnosis of CD,5 the care received by the patients themselves and the support received by the carers.6 Furthermore, it has been argued that such attitudes and behaviours may also increase the disabling effects of the impairment.7 In this context, the 1993 General Medical Council document Tomorrow's Doctors8 emphasized the need to promote positive attitudes in medical students and doctors towards people with disability. Also in 1993, Inman and Kahtan9 made recommendations for teaching on disability based on a comprehensive study of the medical schools. In addition, voluntary bodies have identified a need for health professionals to improve their care of people with disabilities10 and now offer educational packages.11 However, as reported in 1998, "change is slow to reach vocational training and disabled people may lack the help they need from . . . general practitioners".12 The curriculum in vocational training tends to be drawn up district by district and does not always address disability issues. It is also suggested that ‘real training’ only begins after vocational training, but learning at this time is often ‘haphazard’ and ‘isolated’.13
Therefore, the literature has argued that health professionals' attitudes to CD should be changed with the intention of subsequently changing behaviour. However, much psychological research has addressed the issue of attitudes and behaviour and has illustrated that these factors may not always be congruent with each other. For example, although much social cognition work indicates that attitudes predict behaviour,14,15 studies also show the possibility for weak attitude–behaviour relationships16 and even dissonant relationships.17,18 In particular, Festinger describes a state of cognitive dissonance when attitudes are either dissonant with each other or with behaviour, and suggests that this state produces a tension which motivates the individual to try to change one or other factor.17 This lack of correspondence between attitudes and behaviour has also been shown in general practice research. For example, GPs have reported a discrepancy between their desired and actual prescribing decisions for drugs such as antibiotics or hypnotics.19 Therefore, in line with this perspective, it is possible that the management of patients with CD may not always accord with the doctor's intentions to care. Although research has explored the patient's experience of this discrepancy,20 there is little known about it from the doctor's perspective. Therefore, the present study aimed to explore GPs' explanations for consultations when they were either able or unable to behave as they wanted towards their patients with CD.
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Subjects
The sampling frame for this qualitative study was a group of GP registrars and trainers who were deemed to be representative of the UK according to demographic data: initially 120 registrars (n = 62) and trainers (n = 58) from the Oxford and South East Thames regions took part in a questionnaire study about congenital disability (response rate 94%). From this sample, 24 registrars (n = 14) and trainers (n = 10) from the Oxford region were selected purposefully according to age, sex, clinical experience and ethnic group and to be representative of the original whole sample. This was in accordance with recommendations for qualitative sampling methods.21 All subjects agreed to be interviewed. Mutually convenient appointment times were arranged by telephone and 19 interviews conducted. The final sample consisted of 12 registrars (seven female, five male; age range: 25–35 years) and seven trainers (three female, four male; age range: 37–59 years).
Design
The study involved a semi-structured interview using the critical incident technique.19,22
The interview
The subjects were interviewed in their own practices (excluding one interview in a registrar's home and another on a hospital site) by a single interviewer (EHM—researcher/previous trainer), not known to the interviewees. Initially, subjects were asked: "How much experience have you had looking after people with CD?" They were asked to consider two scenarios as a means to access illustrations of incidents when attitudes and behaviour towards patients with CD were considered by the interviewee to be either matched or unmatched. For the matched consultation, they were asked: "Can you remember an encounter when you behaved as you wanted to?" and for the unmatched consultation they were asked: "Have you ever behaved towards a disabled person in a way that is not how you wished to behave?" The interviews lasted between 55 minutes and 1.5 hours, were audiotaped and were transcribed by an experienced transcriber. Interviews continued until no new categories were identified.
Data analysis
Initially, subjects' general experiences of managing patients with CD were described. The critical incidents were then assessed. Subjects described between three and five critical incidents, and a total of 75 incidents were analysed. Each transcript was scrutinized independently and jointly by the authors. They were coded openly, put into categories and reviewed for common themes according to the method of grounded theory21,23,24— this approach has been recommended for health professionals and for research in primary care.25 Although trainers were less likely to draw upon their own personal rather than professional experience than the registrars, for the purpose of this paper the trainers and registrars were analysed together as no other differences emerged between them in terms of their explanations regarding the different critical incidents. The results were shared with the interviewees (some registrars were unavailable, having moved abroad) and accepted as valid.
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Results |
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General experience
Subjects described a range of both personal and professional experience of people with CD. For example, one male trainer said about his experience: "despite being here 14 years I don't think an awful lot . . . children with heart problems and they're all so embroiled in the hospital system . . . a couple of cystics . . . one . . . quite a difficult gentleman who's quite demanding at the best of times . . .". In contrast, a female trainer said: "there's a huge sprinking of congenital abnormalities". A female registrar said: "I've quite a lot of experience being a volunteer on holiday camps . . . and a 3 month house job in the rehabilitation centre . . . you realize that they are human beings . . . nice and not nice and it's allowed to be angry with someone in a wheelchair and not to feel pity . . . It's my attitude to see the positive. I mean it's not nice to put someone on the loo but it's part of the job . . . most of my experiences were good . . . it's a very good experience to deal with people who are less lucky. Not less lucky but different . . . I think I have a weakness for handicapped people".
Critical incidents
Subjects described incidents when their attitudes and behaviours were either matched or unmatched and provided explanations for this in terms of three main themes: aspects of the patients; aspects of the GP; and the historical context of the particular encounter. The categories and themes are shown in Table 1
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Aspects of the patient.. Subjects described the role of the patient's appearance, ability to communicate and the behaviour of both the patient and their carer as influencing whether their attitudes and behaviours were matched or unmatched.
At times, the patient's appearance was described as relating to a matched consultation. For example, when describing a child with severe cleft lip and congenital heart disease who kept getting chest infections and whose mother "couldn't cope with her the way she was" one GP said: "I was very soppy about her . . . she was just a cute little baby who needed a cuddle".
In contrast, the patient's appearance could be perceived as unpleasant and result in a consultation in which the GP did not behave as he wanted: "That child was dribbling . . . he wasn't cute at all . . . the appearance can be off putting if it's too gross".
Issues of communication were often cited as influencing the quality of the consultation. Perceived ease of communication appeared to relate to a matching between attitudes and behaviour. For example, one GP said about her patients at a residential home: "those with cerebral palsy are easier to care for . . . mostly we treat those as we would any other patient . . . You can mostly get a history from the person. I suppose the lack of mental disability makes it easier . . ."
Many also described problems which arose out of difficulties with communication which could relate to an unmatched consultation. One GP said: "It's fear of the unknown. You're not quite sure how to relate with the ones with poorer communication skills . . . you know they are very bright . . . one shouldn't perceive them as different but they are . . . you feel ‘how am I going to cope?’".
Others described their frustration: "There's a fear of saying the wrong thing. Putting them down. Treating them as different. A sense of dissatisfaction . . . practising veterinary medicine". Another said: "It was frustrat-ing to wait and so tempting to finish his sentences".
The behaviour of the patients and their carers was also seen as important. Some described the behaviour of the patient in positive ways and how this enhanced the consultation: "They've got quite a sense of humour . . . you discover it . . . whenever I've dealt with people who have problems like that . . . how much zest for life they have".
In terms of the carer, GPs described how the consultation could be made easier by the carer's behaviour. For example, one GP described the family of a child with cystic fibrosis as ". . . very accepting of the diagnosis" and commented that they were also "undemanding" and that "I see less of her than most children".
In contrast, an unmatched consultation could relate to the GP's perception that patients and carers were ‘difficult’. This was particularly the case if the GP felt pressurized. One described an incident with ". . . a guy in his 20s, congenital rubella . . . came down with a temperature . . . I felt we could keep him at home . . . but oh no . . . ‘he always goes into hospital’ . . . a lot of pressure comes from the carers . . . it sort of irritated me . . . because you've made a decision . . .".
One recalled an incident when she felt ‘blamed’ which involved caring for a baby with CD and said: "That was awful. Mum was very aggressive, laying in to you for something that isn't your fault".
Another described an incident in which they felt that the parents were a hindrance to appropriate care: "They had a very different attitude to any other parent . . . they were very defensive towards the child. They became increasingly protective. A lot of their life is taken over by the child's care. I think they are doing it for the patient and for themselves as well. That's what their life is about".
Aspects of the doctor.. Matching or non-matching between the GPs' attitudes and behaviour appeared to relate to the GP's ability to negotiate and manage a range of boundaries.
GPs described managing the boundary between themselves and the patient in terms of knowledge. In particular, a matched consultation related to the GPs accepting and coping with any challenge to their expertise: "patients know far more about their illness than doctors . . .".
In contrast, the problems concerning the GPs' knowledge boundary could relate to an unmatched consultation. For example, one GP described an incident with a patient with cystic fibrosis in the following ways: "I felt, I ought to be the judge of that rather than you . . . it makes you feel a bit angry, a little bit frustrated . . . I feel a dog's body to his whims".
In parallel, another said: "I resent it . . . you get the feeling they know better than you and you never have any meek and mild carers and patients. You have to explain what you are doing and why".
In addition, GPs also described how they coped with their own problems of overidentification with the patient and managed the personal–professional boundary within themselves. This management expressed itself in the GPs' ability to overcome any initial feelings of aversion to the patient. One doctor who was aware of how he had changed his responses to a patient said: "I used to feel threatened and full of pity . . . I'm not afraid now".
Another said: "Some look really disgusting . . . then you see the person behind all this . . . most handicapped people are great".
One described how she felt that she no longer needed to behave towards people with CD as if they were different but had observed other doctors: "being uncomfortable dealing with patients in wheelchairs . . . it's because they're not used to it . . . they need to learn that there is somebody behind as normal as you".
For some, the management of this boundary also expressed itself in terms of the GP distancing himself from the patient. For example, one GP described his interaction with a patient who was repeatedly admitted close to death: "I separated myself away from him because I felt this was right . . . I couldn't offer the mother any more . . . The death of a child is very frightening . . . I think a handicapped child is very frightening".
The GPs also described how they failed to manage the personal–professional issues which were raised by patients with CD and how this could lead to a discrepancy between their attitudes and behaviour. In particular, this failure was illustrated by a lack of distancing between the GP and the patient. This was particularly apparent when female GPs described consultations involving babies with CD. One GP said: "This could have happened to me . . . it makes it frightening . . . It's quite threatening".
Another said: "It's a disaster . . . if I am the mother, how am I going to cope. It really puts me down". Also: "I don't know if I could cope . . . you have to be so selfless. How could you work? How does it affect your relationships . . . one day it could be me. Let's not think about it".
In addition, overidentification could result in a reluctance to see the patient in the future: "I couldn't go back, what could I say? I suppose I'm just protecting myself . . . Hasn't my life been wonderful, but nothing's changed for you".
Such problems with negotiating the personal– professional boundary also resulted in a tendency to see CD as tragic and the patient as someone who could not have a reasonable quality of life. One GP described a young girl with cystic fibrosis: "If she is house-bound her life is restricted. She can't enjoy life". Another described a boy with cerebral palsy who was living at home with his family: "He was different, mysterious, pitiful".
At times, this tendency towards the dramatic was also reflected in the GPs' beliefs about the carers: "he would be better off in some very caring institution so that the parents can get on with their lives".
They also described managing the boundary between themselves and other health care providers. A matched consultation appeared to relate to the GP having a clear idea of his/her role in dealing with a patient with CD. At times, GPs wanted a minimal role. For example, one GP who described a child with Down's syndrome said: "I'd much rather the hospital team saw him for everything . . . because it would lift a great burden of responsibility".
Others described how they planned their involvement. For example, one GP had asked the family to call him if the child was ill and said: "If not you miss out dealing with these people . . . maybe you can save them a trip to hospital". Another had set up a Practice care plan: "it's not very time consuming seeing them two or three times a year and sending a questionnaire about what their needs are . . . just another patient . . . they do have some extra complications but as far as I am concerned they are no different".
The GPs also described unmatched consultations within the context of the boundary between themselves and other health professionals. For example, one GP described how he had been unable to develop a relationship with a patient because of his unclear role and the problems arising from shared care and open access admissions. He felt: "completely ignored and overridden by the medical establishment . . . it makes you feel useless and impotent if you can't influence the decision for them to go in . . . sidelined".
Historical context.. Each consultation occurs within the context of the previous experiences of both the GP and the patient. A matching between the GPs' attitudes and behaviours often appeared to relate to the GP's own personal and professional experiences of people with CD which were positive. For example, one GP described her experience as a voluntary helper on a holiday camp and how this enabled her to deal with patients with CD in the way that she wished to: "First of all there is a group of volunteers and the handicapped . . . after a few days there is no difference. Everybody has his abilities".
Such experience could also relate to the patient in question. For example, one GP described a patient that he had been seeing for a while: ". . . a lot of high demands but also good to work with".
In contrast, for many, unmatched consultations were related to a lack of experience. For example, one GP said: "medical school education doesn't prepare you for the real world . . . we have to learn by being in the real world and seeing how it affects people . . . and deal with it as you go along". Another described how he'd tried to give parents information and said: "I'd no experience. I made complete blunders to start with . . . one feels very impotent".
However, previous experience per se may not always be beneficial. For example, one GP described a consultation which had not gone well and recalled a visit to a day centre with male patients with various degrees of mental handicap during his medical school education which had coloured his views about people with disability: "I didn't enjoy it . . . a waste of a half day . . . they were violent people . . . That was quite frightening".
Further, the GP's previous experiences of the patient and their carers may also be detrimental to the success of the consultation. One GP described how repeated consultations had been unsatisfactory because of an accumulated anxiety when reassessing a patient with severe cerebral palsy, due to his elderly parents always ‘expecting’ her "to make an instant diagnosis". In addition, the patients' and their carers' own experiences were perceived to relate to the quality of the consultation. For example, some GPs believed that they had not been able to behave as they would have wished, because of the patient's experiences of hospital care. One GP said: "She wasn't very trusting . . . lost faith in the medical profession". Further, when describing the carers, he said "they don't believe that the doctor wants the best for the patient too".
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionReferences |
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The present study aimed to examine GPs' explanations for the matching and non-matching between their attitudes and behaviour towards people with CD. The results illustrated a role for aspects of the patient in terms of the contribution of the patient's appearance, ease of communication and the behaviour of both the patient and the carer. These findings accord with those of other recent studies.10,26 The GPs also described aspects of the doctor in terms of their management and negotiation around boundaries between their own and the patient's knowledge, between themselves as a lay person and as a professional and between themselves and other health care professionals. Further, many of the ‘incidents’ were described using emotional language. This provides some support for previous research indicating that attitudes and behaviour may not always be in agreement with each other and provides some explanations as to why this might be.16,18 It also suggests that dissonance between attitudes and behaviour produces a tension for GPs which is uncomfortable and distressing. In line with previous work in general practice,19 such tension could be a motivator for change.
The results, however, showed that the factors described were related to both matched and unmatched consultations. What, therefore, discriminated between the two types of scenario? It is possible that this variation relates to the third overall theme of the interviews: the role of the historical context. In particular, the GPs described the importance of both their own previous experiences of either people with CD in general or the specific patient being considered and the patient's previous experiences of medical care. Accordingly, the variability in how the GPs managed to behave as they wanted to, professionally, may be a product of such experiences. In line with this, more experience tends to result in positive perceptions, and a paucity of experience produces anxiety and a failure to cope. Experiences of a negative sort, however, can lessen the doctor's ability to behave professionally.27
These findings have implications for planning the curricula for undergraduate medicine, vocational training and continuing medical education. Although most doctors do not care for people with CD every working day, they do have many patients with chronic conditions and face an increasing demand for genetic counselling. In particular, the results suggest that it may not be sufficient just to increase doctors' knowledge about disability as their past experiences are also important. However, is it insufficient only to promote positive attitudes because doctors may struggle against the factors described in order to behave as they feel appropriate. Therefore, it is recommended that doctors have the opportunity to challenge their own understanding of ‘normality’,28,29 reflect on their existing beliefs and develop means of coping with difficult situations which may interfere with their intentions to behave as they would wish. Communication skills training could increase doctors' confidence in situations, for example, when a patient has a speech impairment. Further, rather than merely using observation or interviews (which may promote the image of people with disability as passive recipients of care), the concept of ‘equal status training’ could be used in which people with disabilities participate in or organize the educational sessions. In addition, all doctors should be encouraged to reflect upon any negative experience in order to recognize the impact of this experience on any subsequent clinical care. Although professional structures may acknowledge that disability is a major issue for primary care, such organizations could both formally develop and promote work and training in this area.
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Acknowledgments |
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The authors thank all the GPs who participated in this study. This project was completed as part assessment for a MSc in General Practice at UMDS (EHM) supported by the Oxford Region and funded by the Scientific Foundation Board of the Royal College of General Practitioners.
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References |
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