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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 aåected 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).

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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 eåects of oåering assistance to carers.

The review covers three areas of research. Studies of the problems of carers ofpeople 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 de®ne the problems, the second addresseswhether communication problems add to or present special di¬culties and the lastexamines whether interventions are successful. Behind these issues are moregeneral questions concerning the feasibility of oåering assistance and the identityof those health professionals who are able or quali®ed to oåer it. The overallmessage is that we don’t know very much.

Given the extended period of time from which studies are drawn, the mostsurprising ®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 re¯ect 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 eåect 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 speci®cgroups 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 speci®cally about caring in dysphasia,research into care giving generally is su¬ciently 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 con®rm 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 speci®c 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 studiesdi¬cult.

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 eåective, it maybe di¬cult to reproduce what may be highly individual and unsystematicapproaches in other clinical settings.

Eåorts to assess the eåects of interventions with the carers of people withdysphasia face many of the problems of assessing therapy for dysphasia itself. Thereare di¬culties 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 de®ning 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 re¯ect 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 di¬cult for studies to identifywhether interventions are eåective. 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 eåective styles of coping areidenti®ed, it may be possible to help other carers to adopt them.

Although studies of interventions with carers need to be conducted in anappropriately scienti®c 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 oåer at a clinical level. Servaes et al.point out that studies have examined diåerent forms of intervention. Researchersand clinicians need to consider what the objectives of these diåerent interventionsmay be, how e¬ciently they may be achieved and what forms of expertize arerequired to oåer 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 theirpartners 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 oåered and to assign them to appropriately quali®edhealth workers.

Interventions may give information to carers about the nature of communicationdisorders and the means by which communication may be improved, they may givesocial and personal support and provide opportunities to meet and shareexperiences with other carers and they may oåer more specialized forms ofcounselling and therapy. Speech and language therapists frequently oåer in-formation on communication and are best placed, both logically and professionally,to do so. They may be involved in setting up projects which oåer social supportbutwill recognize that these can be implemented by others without their specialistquali®cations in speech and language therapy. Though they are convenientlyplaced to oåer 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 e¬cacy studies may examine theeåects of similarly quali®ed individuals providing levels of intervention which it isfeasible to oåer within normal clinical practice.

Finally the fact that diåerent forms of intervention exist will aåect the way inwhich studies of interventions with carers are conducted. If we want to evaluate theeåect 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 oåered. Equally we need to recognize that all formsof assistance oåered to carers are likely to provide some degree of social supportand a chance to discuss problems. This suggests that studies should comparediåerent 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 bene®ts of receiving social support.

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