ACQ Vol 12 No 2 2010

Table 1: Summary of the themes relating to the different family and clinician perspectives in this case study of a man with severe aphasia (mis)interpretation (mis)communication (mis)judging aphasia therapy Ruth’s (wife’s) Full recovery is possible; Felt unable to make requests to therapist More, but different, therapy would have perceptions religious conviction for explanation of rationale of therapy; resulted in change Private services are better than assumed you have to do what you are told Pointing and gesture only detract from public ones Superficial understanding of aphasia the real aim of talking Hands-on treatment is the only real Was willing to drive David to a centre if it Being with disabled people in groups is service and therefore Rachel had done meant more service but had not not helpful nothing despite her telephone follow-up discussed this option A friend’s child had speech therapy and Funding issues were the reason Reluctant to use the telephone to ask for improved so David could too for discharge information, nervous about phoning people The homework was useless and had Confused by service structures, no relevance transitions between agencies and multiple health personnel Rachel’s (speech Assumed that Ruth would be happy Assumed that no telephone calls from Ruth Frustrated by Ruth’s attitude to non- pathologist’s) to continue what she had been doing meant that everything was okay verbal strategies perceptions with the previous therapist Not aware of Ruth’s view of home practice Busy with case meetings and or consultancy model negotiating group services but no funding for direct provision Influences from Metropolitan services assuming and Domiciliary therapist did not hand over any No apparent discussion about changing previous services recommending more intensive rural complaint and therefore unaware of Ruth’s therapy direction or homework options provision than is possible view of therapy

understanding and involvement for family members. Rachel reported that time was short and she was restricted in what she could offer by service constraints, particularly working in a rural area. Having to deliver therapy from a distance meant a reliance on home practice but this was difficult for Rachel, and previous therapists, to tailor or monitor. It appears that home practice was not underpinned by sufficient explanation or shared understanding and the couple’s failure to view home practice seriously was not fully evaluated. At Rachel’s handover session, she advised the couple to continue doing what they had been doing. This was flawed because she did not understand the implications of this directive in the light of Ruth and David’s attitude to the homework. Within three months, the couple were discharged from therapy. On the one hand, speech pathologists are recognising the importance of family involvement in rehabilitation but on the other, they are not always being resourced to do what is necessary to make this possible. Involving family in goal planning can be difficult (Levack, Siegert, Dean, & McPherson, 2009). Both time and family-centred approaches are needed to build trusting relationships and develop understandings, not only with the client with the communication disorder, but also with the family. Detailed case studies like this one are useful in revealing the realities of practice and highlighting what can go wrong, especially when the signs and consequences of misinterpretation, miscommunication, and misjudging are not immediately obvious. Involving families means exploring their interpretations about therapy, spending time communicating, answering questions, sharing information, and judging how the client can be most appropriately assisted in therapy. Ultimately, such an investment is surely worthwhile. References Avent, J., Glista, A., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology , 19 (3/4/5), 365–375. Cunningham, R., & Ward, C. D. (2003). Evaluation of a training program to facilitate conversation between people with aphasia and their partners. Aphasiology , 17 , 687–707.

The second issue is that as well as being a gatekeeper, Ruth was a potential resource for the speech pathologists. Certainly, she sat in on sessions both at the rehabilitation unit and within her own home. She found this useful and her inclusion in sessions was clearly encouraged by the therapists. From her perspective, however, there was inadequate effort put into helping her really understand the nature of aphasia and therapy, what her role was, what she was entitled to, what decisions she could share, how the various services functioned, and what they could offer. Her involvement in David’s rehabilitation might have been more productive had she been well informed, included in decisions, and convinced by the benefits of therapy. Her understanding and knowledge of her husband could have been tapped in order to tailor therapy to him more effectively. A third issue was that Ruth’s own needs were not adequately addressed during the different stages of her husband’s rehabilitation. She reported receiving little information from the health services and therefore gathered it from people around her and made assumptions about recovery based on her beliefs and previous experience. These assumptions, including how to reconcile her belief in full recovery with the reality of having a husband with severe aphasia a year post onset, had not really been aired. She obviously had to deal with the frustrations of daily communication breakdown, manage the appointments for a range of allied health services, including physiotherapy and occupational therapy, drive long distances for non- domiciliary appointments, and act as full-time carer. Her lack of interest in homework may have been related, at least in part, to her own fatigue and time pressures but this was not fully explored. Pushing David to do something that he did not enjoy may have had a negative impact on their relationship. Perhaps if Ruth had been better supported and if her religious beliefs, reluctance to initiate contact and concerns about the value of therapy had all been understood, she could have played a different role in therapy. The final issue is that speech pathologists are perhaps not sufficiently supported in developing this level of

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ACQ Volume 12, Number 2 2010

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