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Research considerationsguiding interventions forfamilies affected by aphasiaGuylaine Le Dorze , Claire Croteau , ChristineBrassard & Bernard MichalletPublished online: 31 Aug 2010.

To cite this article: Guylaine Le Dorze , Claire Croteau , Christine Brassard& Bernard Michallet (1999) Research considerations guiding interventionsfor families affected by aphasia, Aphasiology, 13:12, 922-927, DOI:10.1080/026870399401704

To link to this article: http://dx.doi.org/10.1080/026870399401704

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922 Clinical Forum

Research considerations guidinginterventions for families aåected byaphasia

GUYLAINE LE DOR ZE*, CLAIRE CROTEAU, CHRISTINEBRASSARD and BERNAR D MICHALLET

E! cole d’orthophonie et d’audiologie, Universite! de Montre! al, C.P.6128, Succ.Centre-Ville, Montreal, Quebec, H3C 3J7, Canada

Introduction

¼That’s what I ®nd di¬cult. The spouse of the aphasic person, that’s the most forgotten personin all of that story¼be it by the therapists or the specialists¼ that’s what I found di¬cult¼butit’s sure that we are always centered on the aphasic person, it’s true that she is wonderful and allof that, I agree. But the spouse, I say, is the most forgotten person in the whole story. And I amnot sure that we easily go get help on our own, either. (M.B. January 1995)

Although clinicians have long recognized that families are important partners inthe process of rehabilitation of the aphasic person (Buck 1968, Boisclair-Papillon1993), families and especially spouses of aphasic people experience problems oftheir own related to the aphasia of their loved one. They also experiencecommunication di¬culties and various emotions that may be di¬cult (Le Dorzeand Brassard 1995). As stated by M.B. the spouse of an aphasic person, in thecontext of a group discussion about the long-term consequences of aphasia, themanner in which spouses are included in rehabilitation may not be the one thatcorresponds to their needs.

In our response to the lead paper we will focus on families rather than on` informal carers ’ for two basic reasons. First, most of the literature reviewed byServaes et al. and other papers on the social environment of aphasic people pertainsto families and especially spouses. Few studies have focused on informal carers ofaphasic people including a theoretical and operational de®nition of carer. Second,in our view the concept of ` informal carer ’ is not equivalent to that of the family.Some family members may become the ` informal carers ’ of an aphasic person,while other members may not and `informal carers ’ are not necessarily familymembers, they may be volunteers. In other words, although there may be a linkbetween being married to someone and taking on the role of informal carer whenthis person becomes aphasic, the factors which contribute to one taking on this rolehave not been studied. They may relate to age, aphasia severity, time post-onset,perceptual and motor involvement of the person with aphasia, availability ofrehabilitation, availability of social support, social perception of the aphasicperson, perceived psychological needs and others as well.

While the basic premise of the lead paper is probably true, i.e. that aphasia is asource of stress for family members, we do not believe that this concept in itself isan adequate basis for structuring interventions responding to their needs. Anychanges in life, such as marriage, divorce, death of a loved one, having children, apromotion, for example, are potentially stressful. But these stresses associated withlife changes do not all need to be reduced with professional assistance, as some

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Clinical Forum 923

degree of stress under certain circumstances may be bene®cial. Nevertheless,admitting that aphasia onset is a potential stressor for families, many questionsremain. In which social context does aphasia occur and which context this eventcreates ? It may be simplistic to consider aphasia alone without considering howpeople give meaning to this experience (Radley 1994). Under which circumstancesdoes stress require professional assistance? We might also ask which reasonsmotivate the aim of stress reduction: to make families members better partners inrehabilitation ? to prevent divorce? to prevent the institutionalization of theaphasic person? The ultimate aims of any program of intervention for families needto be clari®ed as these necessarily in¯uence programme content. When assistanceis provided to families, should we expect stress levels to decrease ? Would that bean adequate indicator of successful intervention? Our response is that stressreduction does not provide the starting point for adequate intervention forfamilies. What is needed to develop a programme of intervention designed torespond to the problems that families of aphasic people experience ?

A enlarged view of aphasia

Before conceptualizing programmes of intervention for families, a basic under-standing is needed of what aphasia is, what are the changes it produces in people’slives, the problems encountered by people faced with aphasia and how they adaptor not to these problems over time. Why it is necessary to begin with a de®nitionof aphasia?

Traditionally de®ned as an acquired language disorder of neurological origin,this point of view omits the all important social and personal consequences ofaphasia (Parr et al. 1997). Aphasia can be de®ned in a wider sense as an acquiredneurological language disorder that masks the competence of a individual,normally revealed through conversation (Kagan 1995). Barriers to communicationare thus not only the result of the language disorder but also of the ability of acommunication partner to make available the communicative competence of theaphasic person. Thus, aphasia aåects communication between people, i.e. theaphasic person within his } her family, confronting them to profound andunexpected changes. The changes encountered go far beyond language andcommunication, they also aåect the identity of people (Brum®tt 1993), theirprofessional and social lives, as well as their quality of life (Parr et al. 1997). Thisenlarged de®nition of aphasia requires an expanded approach to rehabilitation thattakes into consideration the social environment of people aåected by aphasia.

A better understanding of the changes associated with aphasiain people’s lives

One major point of Servaes et al. is that families and spouses experience a numberof changes in their lives as a result of the aphasia of their loved one and especiallyin the realm of communication. However, the level of understanding of theseproblems is not yet su¬cient from our point of view to adequately programtherapy for families.

Although many changes have been documented in the literature as consequencesof aphasia, it might be appropriate to begin to classify and conceptualize these byreference to a theoretical model. The WHO model provides a conceptual

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924 Clinical Forum

framework, permitting one to consider diåerent levels of consequences. The`handicap creation process’, the Canadian version of this model, goes further byincluding environmental factors in the de®nition of handicap (Fougeyrollas 1995).In this model, the situation of handicap is de®ned as `¼a disruption in theaccomplishment of a person’s life habits, resulting from the interaction between, onthe one hand, his or her impairments or disabilities and, on the other hand,obstacles caused by environmental factors ’ (Boucher and Lizotte 1997, p. 40). Thisview is more compatible with communication disorders, because a communicationdisorder aåects the partners involved in any interaction. Within this model, familiescan be considered as part of the environment of aphasic persons providingfacilitation or barriers. Thus ` situations of handicap ’ occur in particularenvironments. Another advantage of this model is that it allows one to describepositive aspects as well as negative aspects associated with a disorder. This type ofmodel may also adequately take into consideration the consequences of aphasia onfamily members who also experience problems of their own, related to the aphasia,or to other aspects of the stroke event.

A better understanding of the factors that contribute to situations of handicapfor families aåected by aphasia are in need of study. For example, although familiesexperience role changes, loss of friends, communication problems of diåerent sorts(Le Dorze and Brassard 1995), not all experiences are negative. For example, somespouses report that the aphasia brought them together (Le Dorze 1995, Parr 1994).We need to understand better the circumstances underlying such an experience. Isit the quality of the relationship, the age of spouses, the fact they have more timetogether after the aphasia, availability of assistance or other reasons that bringabout this increased closeness? Thus many questions remain that warrant more in-depth studies.

Previous work has demonstrated that the perspectives of families and speech-language pathologists were not similar, where in fact families were more optimisticabout aphasia outcome than were professionals (Mu$ ller et al. 1983, Helmick et al.1976). This optimism may not be unrealistic as has been suggested, but ratherre¯ects an understanding of communication in everyday life (Holland 1977). Oneconclusion we might take to this work is that the perspective of families is anadequate starting point for understanding the consequences of aphasia (Blomert1995) so as to not confound consequences with problems. For example, rolechanges within families may not be problematic in every case. In older couples, rolechanges may occur in conjunction with retirement and may not be perceived asnegative or directly related to aphasia. Role changes may be easier to adjust tounder particular circumstances. Also, a family member may value some new roles,such as taking care of family ®nances and may derive personal satisfaction from it.From another perspective, although family members have been described ashaving overprotective attitudes towards aphasic people (Kinsella and Duåy 1978),overprotection may not be a problem in all cases. In fact, a protective attitudetowards the sick person may be necessary for the well-being of a couple aåected bydisease, such as myocardial infarct (Fiske et al. 1991).

By employing qualitative interviewing (Kvale 1983) and observation methodssuch as conversational analysis (Perkins 1995, Boles 1997) we could come to a muchbetter understanding of what problems people face and which factors contribute totheir appearance. Some di¬culties related to conversation have been reported byspouses (Le Dorze and Brassard 1995). It is important to relate these problems with

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Clinical Forum 925

what may be observed during conversation (Croteau et al. 1997). It is possible thata conversation may appear di¬cult for an outside observer, but not so for theaphasic person and his} her partner. Some conversational behaviours may havebeen present before the aphasia, such as interrupting, speaking far more than theother person, etc. Thus we need a better understanding of how aphasia perturbs ornot conversation between spouses or within families before we can determine whatthey may require in terms of intervention. With a clearer understanding of factorscontributing to the problems of families and their perceptions of these problems wemay be in a more advantageous position to provide assistance to them in ®ndingappropriate solutions.

Considerations guiding interventions for families aåected byaphasia

Although Servaes et al. suggest that programmes of intervention for carers shouldinclude education, skill development and counselling, other important aspectsneed to be carefully considered, such as program aims and content, means,modalities and techniques, for whom and how. First, the aims of any programmeneed to be determined. For example, does the intervention aim to :

E incorporate families members in the rehabilitation process, in order to facilitategeneralisation of therapy gains by the aphasic person?

E improve communication within a couple, in order that the couple maintains asatisfying relationship?

E help spouses assume the role of carer, in order to prevent institutionalization ofthe aphasic person?

E improve the psychosocial well-being of families, in order to prevent thedegradation of their mental and physical health ?

With varying aims in mind, diåerent programmes will require diåerent content,that diåerent types of information be given, skills to be developed will vary and thesupport required may also diåer.

Programmes of intervention may focus on both the aphasic person and his or herfamily, on the couple aåected by aphasia, or focus on them separately or againinvolve groups of aphasic people and their families. These diåerent modalities ofintervention are means to achieve varying aims. In groups, peer-support and peer-learning may be key elements ; while individual attention may permit more in-depth and personalized intervention, as required by conversational intervention(Boles 1997).

In conclusion, we believe that more research employing qualitative methods isrequired about the consequences of aphasia on families to develop programmes ofintervention appropriate to their needs. This conclusion might come as adisappointment for clinicians who need to act and respond today to people in needof assistance in dealing with the aphasia of a loved one and who cannot wait forresearchers to attend to the questions we have raised. We know that the lack of anadequate theoretical base for intervention will not however deter clinicians fromdoing their best. In our opinion some of the elements of the solutions for researchare also part of the solution for clinical intervention. Qualitative interviewing maybe one excellent tool for clinicians as well, as a means to begin intervention withfamilies. The analysis of qualitative interview material may provide plenty of

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926 Clinical Forum

information for guiding therapy with families. Publications of single subject indepth case studies as well as comparative case studies (Yin 1994) reporting on thissort of work would enrich our understanding of appropriate methods for assistingfamilies.

Acknowledgements

The support of the Social Sciences and Humanities Research Council of Canada (toC. Brassard) and the Conseil Que! becois de la Recherche Sociale (to G. Le Dorzeand B. Michallet) is gratefully acknowledged.

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Boisclair-Papillon, R. 1993, The family of the person with aphasia. In D. Lafond, Y. Joanette, J.Ponzio, R. Degiovani and M. Taylor Sarno (Eds.) Living with Aphasia (San Diego, CA:Singular Publishing Group), pp. 173±186.

Boles, L. 1997, Conversation analysis as a dependent measure in communication therapy with fourindividuals with aphasia. Asia Paci®c Journal of Speech, Language and Hearing, 2, 43±61.

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Brumfitt, S. 1993, Losing your sense of self : what aphasia can do. Aphasiology, 7, 569±591.Buck, M. 1968, Dysphasia : Professional Guidance for Family and Patient (Englewood Cliås : Prentice

Hall).Croteau, C., Le Dorze, G., Amireault, M.-C. and Gagnon, S. 1997, An analysis of conversations

of aphasic persons with their spouse. International Clinical Phonetics and Linguistics Associatio nAbstracts , 36±37.

Fiske, V., Coyne, J. C. and Smith, D. A. 1991, Couples coping with myocardial infarction : Anempirical reconsideration of the role of overprotectiveness. Journal of Family Psychology, 5, 4±20.

Fougeyrollas, P. 1995, Documenting environmental factors for preventing the handicap creationprocess: Que! bec contributions relating to ICIDH and social participation of people withfunctional diåerences. Disability and Rehabilitation , 17, 145±153.

Helmick, J. W., Watamori, T. S. and Palmer, J. M. 1976, Spouse’s understanding of thecommunication disabilities of aphasic patients. Journal of Speech and Hearing Disorders, 41,238±243.

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Kinsella, G. and Duffy, F. D. 1978, The spouse of the aphasic patient. In Y. Lebrun and R. Hoops(Eds) The management of aphasia (Amsterdam, The Netherlands : Swets & Zetlinger), pp. 26±49.

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Perkins, L. 1995, Applying conversation analysis to aphasia : Clinical implications and analyticissues. European Journal of Disorders of Communication, 30, 372±383.

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Author for correspondence; e-mail : ledorze ! med.umontreal.ca

Informal carers of aphasic stroke patients.A brief response

PETRA SERVAES, BRIAN DRAPER,PHILIP CONROY* and GREG BOWRING

Rehabilitation Unit, Sutherland Hospital, Locked Bag 21, Taren Point,NSW, 2229 Australia

We acknowledge that this topic covers a wide and complex area of practical andtheoretical interest. Our review was generated by the problems that we identi®edin delivering clinical services to patients and their families. The review collated theexisting literature in this area. We see our review as a stimulus to discussion withthe aim of increasing our understanding of this topic. The ultimate goal is togenerate quality research to guide clinical decision-making. Several commentators(Cant, Le Dorze, Wells) stress the value of qualitative research. We agree thatqualitative research is valuableÐbut there is a danger of relying on this approachas what may be applicable in one centre, may not be true elsewhere. Quantitativeresearch is the critical basis to adequate comparison. Therefore, it is important tolink qualitative and quantitative approaches to reach consensus.

Several authors (Cant, Hermann and Wallesch, Le Dorze, Oddy, Pring,Tompkins) comment on the importance of establishing which factors interact withthe care-giving process (positively and negatively). At risk carers need to beidenti®ed e.g. speci®c coping style. We agree that this should be one of the goalsof research. The problem is the paucity of research to date that has addressed thiswith aphasic stroke carers. We do not know whether the ®ndings from other carerdiagnostic groups are applicable ? It is probably true but is not proven.

Psychological interventions are di¬cult to evaluate with standardized measuresusing Randomized Controlled Trials (Herrmann and Wallesch, Oddy, Wells, Cant,Pring)Ðbut without adequate measurement (as in RCT) it is impossible to makevalid comments on the validity of interventions. In a world of limited resources andcompeting demands there is no room for rehabilitation services, which do notadequately assess their interventions and outcomes? Thus our call for such studies.To compensate for small convenience samples, multicentre studies are required.RCTs do not mean interventions being compared with no interventions, just beingcompared with a control situation e.g. routine care Vs experimental interventionVs routine care 1 delayed intervention.

We agree that outcome measures are going to vary considerably (Cant, Herrmanand Wallesch, Oddy, Tompkins, Wells). They can be subjective or objective and

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