Who cares for carers?

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  • This article was downloaded by: [The Aga Khan University]On: 11 October 2014, At: 04:44Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number:1072954 Registered office: Mortimer House, 37-41 Mortimer Street,London W1T 3JH, UK

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    Who cares for carers?Tim PringPublished online: 31 Aug 2010.

    To cite this article: Tim Pring (1999) Who cares for carers?, Aphasiology, 13:12,914-917, DOI: 10.1080/026870399401687

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  • 914 Clinical Forum

    Gailey, G. and Stiell 1995, Cotherapy with couples aected by aphasia in ` family perspectives fromthree aphasia centers . Topics in Stroke Rehabilitation , 2, 3.

    Gitterman, A. and Shulman, L. 1986,Mutual Aid Groups and the Life Cycle (F. E. Peacock : Itasia,Illinois).

    Gainotti, G. 1997, Emotional, psychological and psychosocial problems of aphasic patients : anintroduction. Aphasiology, 11, 635650.

    Kagan, A. and Gailey, G. 1993, Functional is not enough: training conversation partners foraphasic adults. In A. L. Holland and M. M. Forbes (Eds)Aphasia Treatment: World Perspectives(San Diego, CA: Singular Publishing Group).

    Lyon, H. G., Carisk, D., Keisler, L., Rosenbek, J., Levine, R., Kumpala, J., Ryff, C., Coyne, S.and Blanc, M. 1997, Communication partners: enhancing participation in life andcommunication for adults with aphasia in natural settings. Aphasiology, 11, 693708.

    Patterson, R., Paul, M., Wells, A., Hoen, B. and Thelander, M. 1994, Aphasia a New Life(Coopershill Publishing Inc. Toronto, Canada).

    Rolland, J. 1994, Families, Illness and Disability (Basic Books: New York).Sarno, M. T. 1997, Quality of life in the rst post-stroke year. Aphasiology, 11, 665679.Wells, A. and Patterson, R. 1995, Involving the family in planning for life with aphasia in `family

    perspectives from three aphasia centers . Topics in Stroke Rehabilitation , 2, 3.Walsh, F. and McGoldrick, M. (Eds) 1991, Living Beyond Loss (W. W. Norton: New York).

    Who cares for carers ?

    TIM PRING

    Department of Clinical Communication Studies, City University, London, UK

    Servaes et al.s review of the literature on the carers of people with aphasia is timelyand useful. Timely because it appears when clinicians are showing increasedconcern about the psychological costs of caring for people with dysphasia. Usefulbecause it reveals some of the problems in investigating these costs and in assessingthe eects of oering assistance to carers.The review covers three areas of research. Studies of the problems of carers of

    people with aphasia, studies which compare these problems with those of carersof stroke victims without aphasia and studies of interventions with the carers ofpeople with aphasia. The rst seeks to dene the problems, the second addresseswhether communication problems add to or present special diculties and the lastexamines whether interventions are successful. Behind these issues are moregeneral questions concerning the feasibility of oering assistance and the identityof those health professionals who are able or qualied to oer it. The overallmessage is that we dont know very much.Given the extended period of time from which studies are drawn, the most

    surprising nding is that so few have taken place. Indeed, studies of interventionswith other elderly people with disabilities are added to the last category to increasethe information available. The shortage of research may reect the methodologicalproblems inherent in studies of this kind. Servaes et al. are critical of the failure touse random samples and the lack of blind assessments. Random samples arenecessary because, as the authors point out, variables such as time post onset andseverity of dysphasia eect the burden on carers. Studies must either use random

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  • Clinical Forum 915

    selection so as to fully represent this variation or restrict themselves to specicgroups and caution readers about over generalisation of the ndings. Furthersources of variation may reside in the carers themselves. This issue is addressedbelow.In contrast with the relatively few reports specically about caring in dysphasia,

    research into care giving generally is suciently well developed as to be referred toas a `ourishing enterprise (Pearlin et al. 1990). Consequently there are studies ofother groups of carers who may be of interest because they share some of theproblems of carers of people with dysphasia. These include carers of people withhead injuries (Allen et al. 1994), people with dementia (Hooker et al. 1994, McKeeet al. 1997) and people with multiple sclerosis (Knight et al. 1997).Studies of the burden experienced by carers have used a variety ofmethodologies.

    Interviews have been popular with carers of people with aphasia (see table 1 inServaes et al.). Alternatives are measures which assess health or quality of life (seeBowling 1997 for a review of such measures). These studies are relatively easy tocarry out but the results may be less than clear. It would be surprising if carers werenot to report that caring has psychological costs. The studies conrm that they dobut, by using a variety of measures, give a rather piecemeal picture of its nature.Interviews identify a selection of problems, some rather vaguely described, andmay be unclear as to their severity or priority. They are also an unreliable measurefor evaluating interventions. Use of specic measures such as the Beck DepressionInventory (Beck et al. 1961) or the General Health Questionnaire (Goldberg andWilliams 1988) provide a more tangible indication of particular aspects of theproblem and by having normative data, can give an indication of its seriousness anda means of assessing change. However, the use of a wide variety of measures, somepublished and standardized, others home-made, makes comparisons across studiesdicult.Intervention studies in this area often use what the authors call ` convenience

    samples. It is easy to imagine how this may arise. Clinicians implement a service toadvise and counsel carers. The approach is largely atheoretical (since little theoryexists) and develops through experience. It is perceived to be helpful and a studyis implemented to assess it. The sample is likely to be small, may be self selecting,will lack an adequate control and assessment of the potential gains is unlikely to beconducted by blind or objective means. It is hard not to sympathize with cliniciansin this situation. Their intentions are entirely honourable and the alternative,which involves random assignment and blind assessment, is fraught with practicaland ethical problems. Nevertheless we should be cautious about the results of suchstudies. Even if we are inclined to believe that an intervention is eective, it maybe dicult to reproduce what may be highly individual and unsystematicapproaches in other clinical settings.Eorts to assess the eects of interventions with the carers of people with

    dysphasia face many of the problems of assessing therapy for dysphasia itself. Thereare diculties in measuring the burden of care giving and changes in it. Thisburden may also change with time much as dysphasia may undergo spontaneousrecovery. There may be problems dening the nature of the interventions used andin nding appropriate controls if randomized control trials are to be used as Servaeset al. recommend.It should also be recognized that carers vary in their abilities to cope and,

    consequently, in their need for assistance. In reviewing studies which compare the

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  • 916 Clinical Forum

    carers of stroke victims with and without aphasia, Servaes et al. conclude that theformer do not experience greater psychological problems. This somewhatsurprising conclusion may reect the fact that the abilities of carers to cope withtheir role is a more important variable than the precise nature of the caringrequired. This individual variability will also make it dicult for studies to identifywhether interventions are eective. The issue of variability in coping style is animportant one which is not addressed within the paper. Nor is there space toconsider it in any detail here. In general the approach extends research which hasexamined the strategies which people use in coping with stressful situations(Lazarus 1993). Applied to carers it seeks to identify coping strategies and personalresources which are consistent with good or poor psychological health (see forexample, Pearlin et al. 1990, Chwalisz 1992, 1996, Hooker et al. 1994,Matson 1994).It is important for two major reasons. First, because it may help to identify thosewho are particularly at risk, and second, because once eective styles of coping areidentied, it may be possible to help other carers to adopt them.Although studies of interventions with carers need to be conducted in an

    appropriately scientic way, it is important to avoid the possibility that the researchbecomes a purely academic exercise. While studies of existing interventions havetheir limitations, so too may studies which are conducted by the use of randomizedtrials. Typically they may assess interventions which make demands in terms oftime and resources which it is impractical to oer at a clinical level. Servaes et al.point out that studies have examined dierent forms of intervention. Researchersand clinicians need to consider what the objectives of these dierent interventionsmay be, how eciently they may be achieved and what forms of expertize arerequired to oer them to carers. Clearly, if interventions require special skills, theymust be conducted by clinicians with these skills. However, we must not thenassume that the results of these studies may be generalized to other clinicianswithout the appropriate training.Currently carers receive informal advice from professionals who treat their

    partners with dysphasia. This role often falls to speech and language therapists andwill become a more widely acknowledged part of their role if studies show theseinterventions to have positive results. It seems unlikely that current resources canmeet this demand. Anecdotal reports suggest that the provision of therapy for thecommunication problems of people with dysphasia is already threatened bycompeting demands. For these reasons it may be useful to separate the forms ofintervention which may be oered and to assign them to appropriately qualiedhealth workers.Interventionsmay give information to carers about the nature of communication

    disorders and the means bywhich communication may be improved, they may givesocial and personal support and provide opportunities to meet and shareexperiences with other carers and they may oer more specialized forms ofcounselling and therapy. Speech and language therapists frequently oer in-formation on communication and are best placed, both logically and professionally,to do so. They may be involved in setting up projects which oer social supportbutwill recognize that these can be implemented by others without their specialistqualications in speech and language therapy. Though they are convenientlyplaced to oer more specialized counselling, they should probably resistinvolvement. Here it is preferable that they can identify the needs of individualcarers and that referral for specialist advice where appropriate becomes a more

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  • Clinical Forum 917

    accessible option. In studying interventions of these kinds, decisions must be madeas to the likely providers of each service so that ecacy studies may examine theeects of similarly qualied individuals providing levels of intervention which it isfeasible to oer within normal clinical practice.Finally the fact that dierent forms of intervention exist will aect the way in

    which studies of interventions with carers are conducted. Ifwe want to evaluate theeect of specialist counselling, it would be foolish on both economic andmethodological grounds to randomly assign subjects to groups which eitherreceive or do not receive counselling when some of the subjects so chosen mayhave little need of the service oered. Equally we need to recognize that all formsof assistance oered to carers are likely to provide some degree of social supportand a chance to discuss problems. This suggests that studies should comparedierent approaches to advising carers rather than comparing an intervention withno intervention. This not only avoids the dilemma of having an untreated controlgroup but also provides a better control. For instance if we wish to evaluate aspecialized form of counselling or advice, the appropriate control may be someform of general social support. In this way the possible advantages of specialistadvice are separated from the more general benets of receiving social support.

    References

    Allen, K., Linn, R. T., Gutierrez, H. andWiller, B. S. 1994, Family burden following traumaticbrain injury. Rehabilitation Psychology, 39, 2948.

    Beck, A. T., Ward, C. H., Mendelson, M., Mock, J. and Earbaugh, J. 1961, An inventory formeasuring depression.Archives of General Psychiatry, 4, 561571.

    Bowling, A. 1997,MeasuringHealth : A review ofquality of life m...