Nätterlund, Birgitta OT; Ahlström, Gerd RN PhD
Doctoral Student, Lecturer, Department of Caring Sciences, University of Örebro and Department of Public Health and Caring Sciences, Caring Sciences Unit, University of Uppsala, Uppsala, Sweden (Nätterlund)
Associate Professor, Department of Medicine and Nursing Science, University of Linköping, Senior Lecturer, Department of Caring Sciences, University of Örebro, Sweden (Ahlström)
Accepted for publication 22 March 1999
Correspondence: Birgitta Nätterlund, Department of Caring Sciences, University of Örebro, S-701 82 Örebro, Sweden.
The progressive muscular weakness brought on by muscular dystrophy causes the sufferer many problems in everyday life. Earlier studies in Sweden have shown that adults with hereditary muscular dystrophy often have difficulty in gaining access to rehabilitation. For this reason a special rehabilitation programme was drawn up and carried out, extending over a period of 18 months. The purpose of the study is to describe the participants’ experience of social support in connection with the programme. Thirty-seven participants (21 women and 16 men) were interviewed. The analytical method was phenomenological, incorporating validation by independent judges. Nine overall themes emerged from the interviews: psychosocial support, meeting other people with muscular dystrophy, knowledge and learning, adjustment in daily life, coping with illness-related problems, adjustment at work, management of physical disability, medical examination and treatment, and involvement of relatives. The results indicate that the participants encountered staff with a sense of commitment and felt themselves to be ‘seen and confirmed’. From the discussions and the contact with others in the same situation there arises a sense of affinity and a better understanding of one’s own situation. There was appreciation of the education about the disease, its hereditary aspect, technical aids, grants and physical training. Hardly any of the participants spoke of knowing such things before. In conclusion there was approval of the received support, and recognition that persons with muscular dystrophy should be given access to recurrent rehabilitation.
Rehabilitation staff need knowledge of how different interventions affect individual well-being (McColl & Skinner 1995) so as to be able to draw up clear strategies for supporting patients and their relatives in everyday life (Theobald 1997). High-quality rehabilitation presupposes close co-operation between health-care professionals and the patients and their families (Bartalos 1991). Several studies indicate the importance of social support and purposeful coping for reducing distress in the case of chronic disease (Thoits 1986, Bach 1995, McColl et al. 1995, Roberts et al. 1995, Anderson et al. 1996). Social support can be divided into received support, available support and administered support. Received support is that which the patients feel that they have in fact received. Available support is that which they feel is there if they need it. Administered support is that which the staff have indeed given, which does not necessarily correspond with what the patients feel they have received (Sarason et al. 1990).
In recent years increasing attention has been paid in the literature to intervention for the purpose of improving the patient’s ability to cope to the extent that there can be ‘successful problem-solving’ or acceptance of the situation (Bartalos 1991). Coping is the person’s own effort to handle stress, and it is usually referred to as emotion-focused or problem-focused. The former involves what is done to handle the emotions bound up with stressful problems, and the latter involves what is done to handle the source of stress (Lazarus & Folkman 1984). The two types of coping are integrated in practice and are often impossible to distinguish separately ( Lazarus 1993, Hansson & Ahlström 1998). Thoits (1986) has developed a model for social support (House 1981) related to coping (Lazarus & Folkman 1984): 1) Instrumental support denotes what is done to enhance the person’s capacity for problem-focused coping; 2) Informative support denotes advice, guidance and other such means of backing up both problem-focused and emotion-focused coping; 3) Emotional support denotes what is done to facilitate the person’s capacity for emotion-focused coping (House 1981, House & Kahn 1985).
Earlier studies have shown that adults with muscular dystrophy (MD) have often had difficulty in gaining access to rehabilitation (Ahlström 1994). MD is a term for several chronic, hereditary and progressive diseases where there is increasing degeneration of muscle cells. Different groups of muscles are involved in different types of MD. At present there is no cure (Bartalos 1991), but there are great hopes that gene therapy will eventually provide one (Gardner-Medwin & Sharples 1989, Kunkel 1989, Kuhn 1990). The increasing muscular weakness presents the person with a great number of problems in everyday life (Walton & Gardner-Medwin 1988, Edwards 1989, Ahlström & Gunnarsson 1996). Rehabilitation is expected to enhance the person’s quality of life through the effects of greater muscular strength and a greater range of mobility on the one hand, and through the learning of new ways of performing activities of daily life (with or without technical aids) on the other (Bartalos 1991). Apart from research within the domain of basic medical research, chiefly concerning pathophysiology and muscular physiology, no intervention studies have been published with reference to adults with MD.
The starting point for this study was a specific rehabilitation programme for adults with MD. The programme was based on the results of earlier research by Ahlström and collaborators (Ahlström 1994). These results had indicated that adults with MD encounter many illness-related problems in everyday life which they are unable to handle on their own. Emotion-focused coping in the form of minimization, anxious preoccupation and helplessness/hopelessness is common and is associated with low quality of life (Ahlström 1994, Ahlström & Sjödén 1996). There are different definitions of quality of life in the literature, depending on the theoretical perspective. There is a consensus, however, that quality of life is a multidimensional concept, representing a subjective dimension of experience, and changes over time (Ahlström 1994). In this study it is taken to be subjectively experienced well-being. The purpose of the study is to give an account of how persons with muscular dystrophy experienced the received support in a rehabilitation programme designed for them.
Fifty-two persons with MD from the county of Örebro, Sweden, who had been identified in an earlier population study (Ahlström et al. 1993), were invited to participate in the study. Thirty-eight of them accepted the invitation. One of the 38 was excluded because he was unable to attend all the rehabilitation sessions. Thus the group comprised 37 persons, covering the following diagnoses: 1) general MD: myotonic dystrophy 16; 2) distal MD: hereditary distal myopathy 8; 3) proximal MD: facioscapulohumeral MD 4, Becker MD 3, limb-girdle MD 3, Emery-Dreifuss MD 1, and proximal MD without a definitive diagnosis 2. Duration of the disease was within the range 6-45 years, with a mean of 23.7 years. There were 21 women (57%) and 16 men (43%), and the mean age was 50 years (range 23-69). Seventeen (46%) were in gainful employment, three of them full-time. Of the other 20, 12 were on early retirement and eight on retirement pension. Five (14%) were using a ventilator at night, and three of these had it tested in the course of the rehabilitation programme. Eight (22%) were dependent on a wheelchair.
The overall goal of the rehabilitation programme was the enhancement of the quality of life of those taking part. The following sub-goals were specified:
* plan and draw up individual rehabilitation programmes in consultation with participants and relatives;
* discover medical care requirements and give appropriate treatment;
* optimize participants’ capacity for function and activity;
* give participants and relatives affirmation of their own ability to solve problems of everyday life;
* when individual need and capacity do not correspond, show alternative ways of solving problems in both thought and action;
* provide information and training concerning the disease, technical aids, ergonomics, social service and social insurance;
* offer adaptation of the working and home environments to meet the participants’ particular needs;
* enable participants to exchange experiences with other persons with MD;
* allow room for conversations related to the participants’ own situations and those of their relatives;
* offer individualized psychosocial support where needed; and
* support the involvement of local professionals in the further follow-up of the participants.
The intervention was carried out by a multiprofessional team comprising a nurse, a neurologist, an occupational therapist, a physiotherapist and a medical social worker, together with, as consultants, a pulmonary physician, a cardiologist, a dietician, a speech therapist and an orthopaedic shoemaker/technician. The participants were divided into six groups of 5-8 in accordance with type of MD, degree of disability and age. The intention was that the groups should be as homogeneous as possible. The programme involved four sessions between the spring of 1995 and the autumn of 1996, and involved both individual intervention (75%) and group activities with participants and relatives (25%).
Session 1. One day. Contact day. After an introduction within a group each participant, together with a relative if there was one, met the team for individual examination. Individual rehabilitation plans were drawn up. Visits to home and work-place were planned.
Session 2. Four days (2 weeks later). Programme days. Individual measures (carried out by all the members of the team) in accordance with the aforesaid rehabilitation plans, involving, for example, adaptation of home, trying out of technical aids, examination, information concerning self-care programmes and (if required) contact with the orthopaedic shoemaker. Group activities led by dietician, social worker, speech therapist, physician, physiotherapist (e.g. discussion, education, water gymnastics), and evening activity arranged by the association for the disabled.
Session 3. Two-three days (6 months later). Follow-up programme. Completion of earlier individual measures in accordance with the rehabilitation plans, also group activities (e.g. discussion led by social worker or leisure activities suited to the needs of the disabled). The number of days was decided on the basis of the size of the groups.
Session 4. Two days (18 months later). Concluding measures. Individual measures, individualized discussion for the purpose of evaluation (with reference to the particular rehabilitation plan), and group discussion. Planning of how further rehabilitation is to be organised.
The 37 participants were interviewed for the purpose of obtaining a deeper understanding of how persons with MD experience received support in the course of rehabilitation. The interviews were conducted at the hospital at the conclusion of the rehabilitation programme. It was the first time the interviewer (BN) had been in contact with the persons to be interviewed. The interviews were 45-90 minutes long. They were taped and then transcribed verbatim. An interview guide had been drawn up on the basis of the above-mentioned 11 sub-goals (Ahlström & Gunnarsson 1997) and a theoretical model for social support (House 1981). The interviewer always began by asking the participant to describe what he or she had got out of the rehabilitation. The interview guide covered three areas: 1) instrumental support (involving questions like ‘Will you describe any problem that you have had help in solving?’); 2) informative support (with questions like ‘Will you describe your experiences about the teaching?’); and 3) emotional support (with questions like ‘Will you describe how you felt about the discussion of questions to do with your own everyday life or that of your relatives?’). In each of the three areas follow-up questions were asked, to obtain further clarification and a fuller account.
The analytical procedure was phenomenological in nature and comprised five steps, inspired of Giorgi (1996): reading of interviews, division into meaning units, transformation, synthesis and general structure.
Reading of interviews
For the purpose of obtaining an overall picture, the verbatim transcriptions of the 37 interviews were read. Then each one was analysed on its own.
Each meaning unit was systematically transformed in two steps (first and second transformation), each raising the level of abstraction. In this, ‘bracketing’ was employed, which is to say that the researchers previous knowledge and understanding was excluded. The meaning units were set out as scrupulously as possible and with no intrusion of interpretation.
Validation procedure A
The purpose of the validation was to guarantee that the interviewer had been faithful to the interview transcription in performing the analysis. A nurse (Marita Widar) with experience both of rehabilitation (of both children and adults) and of qualitative interview analysis (Widar & Ahlström 1998), acted as independent judge. Before doing the validation she read literature on the project itself (Ahlström & Gunnarsson 1997), on social support (Thoits 1986, Sarason et al. 1990) and on phenomenological method (Giorgi 1996).
Reading of interviews
The independent judge (MW) began by reading all the interview transcriptions (Figure 1), in order to obtain an overall picture.
Testing of method
The method of validation was tested by the independent judge’s transforming 13 meaning units chosen from the 37 interviews. The sample was taken by the interviewer: it comprised the first meaning units in every third interview. The judge’s transformations of the 13 meaning units were compared with those of the interviewer (BN). The purpose of this testing of method was to obtain a common basis for transformation. The differences which arose were discussed, then a final form was agreed on.
Transformation of text
The independent judge received all the meaning units from the 37 interviews and did a transformation of them ‘blind’, whilst the interviewer performed a further review of transformations 1 and 2 on the basis of the criteria deriving from the testing of method (Figure 1).
Validation and final joint transformation
All the transformed meaning units from the 37 interviews were compared by the interviewer (BN) and the independent judge (MW) (Figure 1). If there was any difference the original text was read once again and discussed, then the transformation was altered so as to make it as faithful as possible. This testing of credibility was carried out in accordance with the concept of correspondence, which is to say that the ‘truth content’ of the transformations was determined by their agreement with what the persons interviewed had expressly said (Kvale 1989).
Synthesis and validation procedure B
The authors (BN, GA) read through all the meaning units and the second transformation. For every person interviewed (n = 37), each author (BN, GA) then formulated, independently of the other, a synthesis, based on the validated transformations for the purpose of obtaining a phenomenological description of the participants’ experiences of received support. The authors’ syntheses were compared, and in the case of difference there was discussion in order to make the syntheses as true to the second transformation as possible, whereupon the final syntheses were formulated (Figure 1). After the conclusion of the validation of the 37 syntheses a general structure (Giorgi 1996) was drawn up (BN), covering the following nine themes: (1) psychosocial support; (2) meeting other people with MD; (3) knowledge and learning; (4) adjustment in daily life; (5) coping with illness-related problems; (6) adjustment at work; (7) management of physical disability; (8) medical examination and treatment; and (9) involvement of relatives.
The study has been examined and approved by the research ethics committee at Örebro Regional Hospital, Sweden.
Most of the participants feel that the staff had a sense of commitment and were ready to take the time to listen to what they had to say. The participants had trust in the staff, and found them to have knowledge of muscular dystrophies, a knowledge they passed on. It was good not having to explain things, the staff understood and were sensitive to the participants’ wishes. There was also appreciation of the discussions with the staff, where the participants could speak about their situation in peace and quiet. Several participants indicated that they got more help and support than they had expected, and many refered to there being a sense of security in knowing that you can ring up one of the team if you have a problem:
Yes, I think it’s a pity it’s over. I think it’s good to have this contact. You can take anything up, you can hear calming words if you’re worried about something, worried about what’s going to happen to you, which is the awful part.
Meeting other people with MD
Several of the participants had not previously met anyone else with muscular dystrophy. Thirty participants expressed the opinion that it had been valuable meeting others with the same illness (‘positive’, ‘awfully important’, ‘useful’, ‘the most important thing’, ‘interesting’, ‘means a lot’). It was good to be in a group and feel a sense of community. They have found new friends, have got to know one another’s difficulties and have given one another tips and advice. It has been good, they say, to become aware that they are not alone in their particular affliction: others, they find, are even worse off than themselves. Only a couple of the participants describe themselves as feeling no sense of community with the others:
You’ve seen what it’s like for others, and in a way that’s just about the best part, there’s a lot that’s good, of course, but just about the best thing is getting the chance to meet other people in the same boat.
Knowledge and learning
The participants described themselves as having received a valuable education concerning the disease, its hereditary aspect, technical aids, grants and physical training. Only a few had previous knowledge but even these few appreciated receiving new and up-to-date information about the disease and current research. The participants said that they are now aware of the importance of keeping to a proper diet and of keeping mobile. A few felt that they were given too much information on the same occasion, it was too intense. The participants felt that they, for their part, had given the staff knowledge and experience of what it is like living with muscular dystrophy:
And all are from different fields. The occupational therapist’s got this one, the social worker’s got that one, the doctor’s got another one, but at the same we’re all together, so there’s a big selection to choose from. Yes, I think it’s been great.
Adjustment in daily life
The participants felt that they had received support directed towards making things easier in their daily lives. This was in the form of adaptation of the home, technical aids, practical advice on working posture and little tricks for being able to do more. More than two-thirds of the participants spoke of having received technical aids which they ‘can’t live without’.
Some would like more help in adapting their home since they still have problems which it is difficult for them to solve on their own. A few are still healthy enough not to need technical aids or changes in their home. Nevertheless they appreciated being informed about the things which are available and to which they can have recourse when they become worse. Several said they want to try first without technical aids and only use them if they find they cannot do without them. They had been afraid of starting to use technical aids, especially a wheelchair, but now realized that such aids give them greater freedom of movement. Several appreciated having received splints and shoe inserts which make it easier for them to walk:
What was very good was that they showed, very thoroughly, what technical aids there are but didn’t try to push me into getting any of them, and that’s important too.
Coping with illness-related problems
The participants regard the rehabilitation as offering support both to themselves and to their relatives with regard to handling the difficulties of everyday life. Several spoke of always trying to find an alternative strategy if the first one failed. Approximately a third described the illness as having crept up on them, and spoke of having had it so long that they had got used to it and therefore gave no thought to how they handled the problems that come up. The participants described that they try to cope on their own to the best of their ability before asking for help. Slightly more than a third of them found it difficult to accept help, especially from someone they do not know, and hesitated to ask even relatives for help, wanting to be like everyone else and not be seen as moaners. Others felt that they had no one they could ask for help, or they said that no one offers to help. It is more difficult to ask for help if the disability is not visible:
You’ve got to try to solve problems all the time when you’ve got a disability like this. I mean, you’ve got to do the best you can for yourself.
Adjustment at work
Of the 17 participants gainfully employed, almost all felt that they did not have the strength and energy to work full-time, it being both physically and mentally strenuous to go to work and then take care of the family. At the same time they regarded it as a good thing to be able to get out of the home and meet fellow-workers and move about. Some of them mentioned having received valuable help from the team with regard to such improvements at work as adaptation of tasks, ergonomically correct posture and reduced hours. Only a few felt that they got help and support from their fellow-workers, and the majority found it difficult to ask for help when they cannot cope with a task:
It’s not that I don’t want to work, but I think it’s unfair that the one I work with gets to take over more and more because I can’t do it.
Management of physical disability
Rather more than half of the participants related that they have received support for further training in the form of tips, advice and training programmes. They dared to move more after having learnt of the importance of training for maintenance of function and for prevention of unnecessary deterioration in the form of atrophy due to inactivity. Almost half experienced that they had acquired a greater sense of motivation regarding training. They intend to go on training when they are back home, because it makes them feel good and they think it important to do what you have the energy for. Previously several had been advised not to train. The participants described themselves as having been enthusiastic in the beginning but as being remiss and forgetting to train, or as finding the training boring. They put off training but have a bad conscience about it. Several are too tired to train when they get home from work. Aches and pains are another obstacle, and some persons shy away from training because their balance is poor and they are afraid of falling:
Yes, I suppose I’ve been a bit lax about it, but now I’ve found out it’s really produced results, so now I’d really better try to get down to it.
Medical examination and treatment
The participants thought it very good that they were examined and were given referrals for such further examinations as spirometry and eye check-up, and for treatment, first and foremost ventilator treatment. They had received help with their breathing problems, and a couple of them had had the relief of discovering that they have good breathing values and are not as ill as they had thought. Some have difficulty regarding nasal and indistinct speech, and these persons mention having received advice about how to improve their manner of speaking:
Well, now I’m sort of clear about things. I’ve had tests taken and so have the kids, so now I know what’s what, know that they’re going to be healthy, which is a big relief.
Involvement of relatives
Most of the participants felt that the involvement of relatives was valuable and instructive, both for themselves and for the relatives. They felt that their relatives understood them better now, and that it was good for their relatives to see that there were others with the same illness. Eleven participants who did not have a relative taking part said either that it was unimportant because they can cope on their own anyway, or that they had no relative who was able to take part. Several found it difficult to talk to their children about their illness, not wanting to worry them:
Well, my husband thought it was good to get to know a bit about the muscles, what their structure is and which ones are sick, what it is about them that’s sick. So he was ever so interested.
The persons interviewed described themselves as having been ‘seen and confirmed’ by the rehabilitation team. The staff have both given them greater knowledge and shown them respect for their competence regarding living with muscular dystrophy. Education is felt to be valuable, in the first place that concerning the muscular dystrophy and its hereditary aspect. There is anxiety lest one’s children should be afflicted with the disease. The persons interviewed felt that learning about disease and heredity had been a good thing for their relatives too. Emotional support for the relative through, for instance, showing that one understands (Theobald 1997) is a prerequisite for his or her in turn being able to support the person afflicted with MD.The results confirm the value of rehabilitation in small groups with persons who have the same disease and can provide one another with motivation and emotional support (Anderson et al. 1996). The discussions and the opportunity to meet others in the same sort of situation create a sense of community and help them to understand their own situation better. For the first time participants feel there are others with lives much like their own. They have been able to compare themselves with others on an equal basis, not feeling outside or different. Studies have indicated that both formal groups (i.e. ones led by staff) and informal ones (i.e. self-help groups) are valuable for persons with a physical disease (Hildingh et al. 1995, McColl 1995) during and also after rehabilitation. It is important that persons who have an incurable progressive disease should have the opportunity to examine and work on their feelings and to verbalize their apprehension and anxiety, this in relation to the past, present and future. By talking about what is going to happen, the patient can make preparations in the form of positive coping strategies (Edwards 1989). The support and education have given the participants greater motivation and ability when it comes to meeting the demands with which the illness confronts them.It emerges from the interviews that the participants had a favourable impression of the received support. This can be traced to a humanistic approach (Lazarus & Folkman 1984) adopted by all members of the rehabilitation team, who strove for patient participation through involvement, sharing and collaboration. In the literature there is no clear consensus regarding what the concept of participation entails (Kendell 1993). Brownlea (1987) describes participation as ‘getting involved or being allowed to become involved in the decision making process or delivery of a service or even simply to become one of a number of people consulted on an issue or matter’.Since the study was based on the goals of the rehabilitation programme and on Thoits’s (1986) theoretical model of social support in relation to coping, the purpose and structure of the question areas and of the follow-up questions were clear. At the same time the interview was to some extent controlled, restricting the freedom of narration of the person being interviewed. In this study the steering of the questioning has been judged a merit, because the interviews are an evaluation of a specifically designed rehabilitation programme. After a phase of analysis characterized by ‘bracketing’ there emerged nine themes. Except for ‘coping with illness-related problems’, the eight themes emerged from the phenomenological analysis and all eight were seen as referring to both instrumental, informative and emotional support (House 1981, House & Kahn 1985). A consequence of social support will be the enhancement of the ability to cope with illness-related problems (Thoits 1986). From the answers on coping, however, it is impossible to distinguish between problem-focused coping and emotion-focused coping. In the literature it is said that these types of coping are to be regarded as theoretical concepts which for the most part are integrated in practice ( Lazarus 1993, Hansson & Ahlström 1998).The participants felt that they had now ‘come to the attention of the health-care system’ and that they now knew who to get in touch with for help or advice. It is ethically important that patients with grave chronic diseases are not abandoned after the conclusion of a project. In the planning therefore of a project extending over a limited period, follow-up must not be neglected. It is important that a social network be built up in the patient’s local environment, so that he or she can get to know the appropriate staff in order to be able easily to get in touch with them if a problem arises (Roberts et al. 1995). The participants in this project were followed-up through a new department in a habilitation centre for adults. The goal and ideas from this project were implemented by one of the authors (GA).In phenomenological method it is important to be faithful to the text of the interview and important that validation be guaranteed in that transformations and syntheses are formulated in the most scrupulous manner (Giorgi 1996). In this study there was validation also by independent judges. It emerged that the transformations of the interviewer (an occupational therapist) and the first judge (a nurse), respectively, had the same content although differing in choice of expression. For the interviewer the expression ‘make things easier in everyday life’ referred to measures large and small, whilst for the judge it referred only to large measures. In the testing of method before the validation procedure it was decided to let the expression refer to measures both large and small. The fact that the interviewer and the judge had different experience and different occupational background was regarded as an advantage for the credibility of the results. Whether validation of phenomenological research is warranted or not is the subject of debate in the literature and there is a lack of consensus (Beck 1994, Giorgi 1996, 1997). In this study it has been possible to use the five-step method (Giorgi 1996) in analysing the text of the interviews with 37 persons. Every effort was made to be faithful to the original text, at the same as every effort was made to avoid all presuppositions regarding its interpretation. A merit of this study is that the interviewer took no part in either the planning or the implementation of the rehabilitation, for which reason the participants did not find themselves in any dependent relation to her. The interviewer had not met any of the persons before interviewing them, this to avoid the risk of ‘socially desirable’ answers. Sometimes it was difficult to interview because there were some with dysarthria (Holmberg et al. 1996). In such cases supplementary questions were asked in order to obtain complete audible accounts on the tapes.
To both work and look after a family is often too much for the person with MD (Edwards 1989). The person thinks it important to be able to get out and meet others at work, and to maintain his or her role in society. By means of recurrent periods of rehabilitation the person can be given the possibility of carrying on working, even if on a reduced scale, and meets others in the same sort of situation. Muscular weakness is a common cause of limited opportunity to work, and it can also be the cause of limited opportunity to choose the type of work. Many with chronic disease are put on early retirement (Boutaugh & Brady 1996). Transport to and from work constitutes another restriction, because the MD patients cannot get on or off a bus on their own, or into or out of a car (Nätterlund & Ahlström 1999), therefore they need a specially adapted car. They described that they receive insufficient support from the employer, which is in line with previous findings (Sarason & Sarason 1994). Several of the participants felt that discussing things with the rehabilitation staff had given them the courage to speak to their fellow-workers about their illness. Training designed to maintain posture and mobility and to counteract contractures is of particular importance for persons with MD (Edwards 1989, Viswanathan 1991).One limitation of this study is that the results may be influenced by the fact that the persons had taken part in earlier research (Ahlström 1994) and can be expected to have a generally favourable attitude because of the attention paid to them before. Some of the staff had themselves chosen to take part, which means that they most likely had a particular commitment. Therefore there is need of further application of the programme to determine whether equally favourable results are obtained when there are other staff and other persons with MD or other chronic disease.The rehabilitation goals were formulated on the basis of earlier descriptive research concerning this patient group (Ahlström 1994). It emerges from the results that the goals were individualized in accordance with particular need. The study indicates the importance of a multiprofessional team to assist persons with MD to cope with the complexities of everyday life. In spite of the fact that MD is a progressive disease, some of the participants feel both a physical and mental improvement. They have become happier, feel they have greater mobility and are stronger, have more energy and have acquired greater motivation, probably as a result of the social support from the team. Recurrent rehabilitation should be made available to these patients. There is also a need for longitudinal research on the value of rehabilitation from the patients’ perspective, in particular qualitative studies.
This research was supported by the Vårdal Foundation and the Department of Caring Sciences, University of Örebro. The authors wish to thank Mrs Marita Widar for her validation work.
Ahlström G., Gunnarsson L-G., Leissner P. & Sjödén P-O. (1993) Epidemiology of neuromuscular diseases, including the post-polio sequelae, in a Swedish county. Neuroepidemiology 12, 262-269. [Context Link]
Ahlström G. (1994) Consequences of muscular dystrophy: impairment, disability, coping and quality of life. Dissertation, Faculty of Medicine, Uppsala University, Universitatis Uppsaliensis, 489, 7-66. [Context Link]
Ahlström G. & Gunnarsson L-G. (1996) Disability and quality of life in individuals with muscular dystrophies. Scandinavian Journal of Rehabilitation Medicine 28, 147-157. [Medline Link] [CINAHL Link] [Context Link]
Ahlström G. & Sjödén P-O. (1996) Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy. Journal of Psychosomatic Research 41, 365-376. [Medline Link] [Context Link]
Ahlström G. & Gunnarsson L-G. (1997) Rehabilitation for Better Quality of Life. Department of Caring Science, University of Örebro, Örebro (in Swedish). [Context Link]
Anderson D., Deshaies G. & Jobin J. (1996) Social support, social networks and coronary artery disease rehabilitation: a review. Canadian Journal of Cardiology 12, 739-744. [Medline Link] [Context Link]
Bach J.R. (1995) Introduction to rehabilitation of neuromuscular disorders. Seminars in Neurology 15, 1-5. [Medline Link] [Context Link]
Bartalos M.K. (1991) Muscular dystrophy: assessing the impact of a diseased state. In Muscular Dystrophy and Other neuromuscular Diseases: Psychosocial Issues (Charash L.I., Lovelace R.E., Leach C.F. et al. eds), The Haworth Press, New York, pp. 63-73. [Context Link]
Beck C.T. (1994) Reliability and validity issues in phenomenological research. Western Journal of Nursing Research 16, 254-267. [Medline Link] [CINAHL Link] [Context Link]
Boutaugh M.L. & Brady T.J. (1996) Meeting the needs of people with arthritis: quality of life programs of the Arthritis Foundation. Orthopaedic Nursing 15, 59-70. [Medline Link] [CINAHL Link] [Context Link]
Brownlea A. (1987) Participation: myths, realities and prognosis. Social Science and Medicine 25(6), 605-614 [Medline Link] [Context Link]
Edwards R.H.T. (1989) Management of muscular dystrophy in adults. British Medical Bulletin 3, 802-818. [Medline Link] [Context Link]
Gardner-Medwin D. & Sharples, P. (1989) Some studies of the Duchenne and autosomal recessive types of muscular dystrophy. Brain & Development 11, 91-97. [Medline Link] [Context Link]
Giorgi A. (1996) Phenomenology and Psychological research. Duquesne University Press, Pittsburg, pp. 8-85. [Context Link]
Giorgi A. (1997) The theory, practice and evaluation of the phenomenological method as a qualitative research procedure. Journal of Phenomenological Psychology 28, 235-261. [Context Link]
Hansson B. & Ahlström G. (1999) Coping with chronic illness: a qualitative study of coping with postpolio syndrome. International Journal of Nursing Studies 36, 255-262. [Medline Link] [CINAHL Link]
Hildingh C., Fridlund B. & Segesten K. (1995) Social support in self-help groups, as experienced by persons having coronary heart disease and their next of kin. International Journal of Nursing Studies 32, 224-232. [Medline Link] [CINAHL Link] [Context Link]
Holmberg E., Nordqvist K. & Ahlström G. (1996) Prevalence of dysarthria in adult myotonic dystrophy (Steinert M) patients; speech characteristics and intelligibility. Logopedic Phonoiatrics Vocology 21, 21-27. [Context Link]
House J.S. (1981) Work, Stress and Social Support. Addison-Wesley, Reading. [Context Link]
House J.S. & Kahn R.L. (1985) Measures and concepts of social support. In Social Support and Health (Cohen S. & Syme S.L. eds), Academic Press, Orlando, pp. 83-108. [Context Link]
Kendell S. (1993) Do health visitors promote client participation? An analysis of the health visitor-client interaction. Journal of Clinical Nursing 2(2), 103-109. [CINAHL Link] [Context Link]
Kvale S. (1989) Interview: An Introduction to Qualitative Research Interviewing. Sage, London, pp. 135-173. [Context Link]
Kuhn E. (1990) From dystrophia muscularis progressiva to dystrophin. Journal of Neurology 237, 333-335. [Medline Link] [Context Link]
Kunkel L.M. (1989) Muscular dystrophy: a time of hope. Proceedings of The Royal Society, Biological Sciences 237, 1-9. [Context Link]
Lazarus R.S. & Folkman S. (1984) Stress, Appraisal and Coping. Springer, New York. [Context Link]
Lazarus R.S. (1993) Coping theory and research: past, present and future. Psychosomatic Medicine 55, 234-247. [Medline Link] [Context Link]
McColl M.A. (1995) Social support, disability, and rehabilitation. Critical Reviews in Physical and Rehabilitation Medicine 7, 315-333. [CINAHL Link] [Context Link]
McColl M.A., Lei H. & Skinner H. (1995) Structural relationships between social support and coping. Social Science of Medicine 41, 395-407. [Medline Link] [CINAHL Link] [Context Link]
McColl M.A. & Skinner H. (1995) Assessing inter- and intrapersonal resources: social support and coping among adults with a disability. Disability and Rehabilitation 17, 24-34. [Medline Link] [CINAHL Link] [Context Link]
Nätterlund B. & Ahlström G. (1999) Problem-focused coping and satisfaction in individuals with muscular dystrophy and post-polio. Scandinavian Journal of Caring Science 13(1), 26-32. [Medline Link] [CINAHL Link] [Context Link]
Roberts J., Browne G.B., Streiner D. et al. (1995) Problem-solving counselling or phone-call support for outpatients with chronic illness: effective for whom? Canadian Journal of Nursing Research 27, 111-136. [Medline Link] [CINAHL Link] [Context Link]
Sarason B.R., Sarason I.G. & Pierce G.R. (1990) Social Support: An interactional View. John Wiley & Sons, New York. [Context Link]
Theobald K. (1997) The experience of spouses whose partners have suffered a myocardial infarction: a phenomenological study. Journal of Advanced Nursing 26, 595-601. [Fulltext Link] [Medline Link] [CINAHL Link] [Context Link]
Thoits P.A. (1986) Social support as coping assistance. Journal of Consulting and Clinical Psychology 54, 416-423. [Medline Link] [Context Link]
Viswanathan R. (1991) Helping patients cope with acute loss of neuromuscular function. In Muscular Dystrophy and other Neuromuscular Diseases: Psychosocial Issues (Charash L.I., Lovelace R.E., Leach C.F. et al. eds), The Haworth Press, New York, pp. 155-163. [Context Link]
Widar M. & Ahlström G. (1998) Experiences and consequences of pain in persons with post-polio syndrome. Journal of Advanced Nursing 28, 606-613. [Medline Link] [CINAHL Link] [Context Link]
Walton J. & Gardner-Medwin D. (1988) The muscular dystrophies. In Disorders of Voluntary Muscle 5th edn (Walton J. ed.), Churchill Livingstone, Edinburgh, p. 519-568. [Context Link]
Keywords: muscular dystrophy; social support; rehabilitation programme; evaluation; qualitative method; phenomenology; quality of life; chronic disease