Perspectives of quality of life by people with aphasia and their family: suggestions for successful living.

Understanding the client's perspective is essential for good practitioner care in rehabilitation after stroke, and nothing is more relevant than enquiring directly about our clients' quality of life to inform our management. Relatively little is known about how older people with aphasia consider the quality of their current lives, and this article seeks to explore this issue. Four women's accounts of their life quality are presented, as well as their husbands' or daughter's accounts of their lives. Their stories share some common elements. Who you love or share your life with; where you live; feeling independent and/ or in control; and engaging in satisfying activities mattered to these women's life quality. The impact of aphasia varies across the cases, and the need to accept change for successful living is illustrated in all accounts. Key words: aphasia, family, interviews, quality of life

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The provision of services that meet the needs of the service user is becoming more important in today's health care systems, particularly with respect to stroke, which is considered the leading cause of disability in Western countries. This user focus is increasingly demonstrated in documentation and government initiatives. For example, in the United Kingdom, the second edition of the National Clinical Guidelines for Stroke is prefaced with the opinions and experiences of stroke patients and carers, and examples of patients' and carers' perspectives are interspersed throughout the document. (1) However, to understand the needs of the stroke patient, one needs an understanding of the lived experience of stroke, which means going beyond the "objective measurement of function," which is so "central to rehabilitation," (1(p37)) and seeking the perspective of the individual.

This article describes the perspectives of four older individuals with stroke and aphasia on what gives them quality in their lives. The interviews contributed in part to a much larger research project that endeavored to demonstrate a link between communication and quality of life for older people regardless of whether they had an aphasic language impairment or not. Some of this research has already been published, for example, how essential social and emotional support, social activity, and psychological well-being was to people with aphasia (2) and whether family members or friends could adequately answer questions about someone else's quality of life on their behalf if they had aphasia. (3) However, people's perspectives on whether they thought they had quality in life and, as such, were living successfully have not been published and are the focus of this article.

Method

Thirty people with aphasia were recruited through a number of sources in Australia (metropolitan hospitals, university aphasia groups, and stroke groups), and each had given ethical approval for the study. People were visited in their homes. Although these visits were clearly research agreements, the presence of the researcher in someone's home altered the dynamic. Participants felt comfortable and relaxed in their homes, and therefore their responses reflect the context in which they were interviewed. Each person was interviewed individually by the primary author, who is a speech-language pathologist, and their responses were tape-recorded or handwritten if the person requested not to be taped.

The quality of life interviews were structured around six questions that were asked in the same order: (1) How would you describe the quality of your life, and why do you say that? (2) What gives you quality in life? (3) What takes quality away from your life? (4) What would make the quality of your life better? (5) What would make the quality of your life worse? (6) Does communication have an impact on the quality of your life, and, if yes, how? The first five questions had been used before in researching older Londoners' quality of life (4) and the sixth was written specifically for this research. People with aphasia also invited a significant other to participate in the research as their proxy respondent (a person who could answer for them if they were unable to). Questions to these people were slightly rephrased. For example, "How would [name] describe the quality of her life, and why would she say that?"

This article focuses on four people--Rose, Joan, Maude, and Fran--and their significant others as appropriate. They were selected because they illustrate the theme of living successfully with aphasia after a stroke. Their responses to the questions are reported in their entirety. Before and after each story is a brief commentary that provides some context for the reader and emphasizes specific features in the story. All names have been changed to protect people's privacy and confidentiality.

Rose's story

Rose was 81 years old, recently married, and living with her new husband in a self-contained unit (independent living) within a retirement village. She had 7 years of schooling and worked as a shoe sales assistant during her life. Her husband had been a clerk. At the time of the interview, she had been living with the stroke and aphasia for 3.5 years and had met her husband at an aphasia group coordinated by a hospital outpatient rehabilitation service 2 years previously. Rose's communication was characterized by fluent speech but significant difficulties in saying the names of words and a significant hearing impairment, however she accommodated this well by using hearing aids. Her hearing loss appeared to have little impact on her conversation during the interview. Rose's perspective on her quality of life is as follows.

Rose thought quite positively about her quality of life:

 
   Well I think it's really wonderful really.. well because um 
   well.. Ron'sss here ffirst with me, and then because there's 
   I think it's so wonderful that I was ah so terrible you know 
   when I was sick and now I'm I'm so much so much better, 
   you know. Yes, ... and I think it's just wonderful that that 
   I'm happing happing with Mark with er Mark, isn't that 
   poor darling.... [Rose laughs at her calling her current husband 
   by her previous husband's name.] It's um Ron yes 
   so ... it's I think it's really wonderful that we've got together 
   and and having such a lovely time, you know. 

Rose discussed being happy where she lived as giving her life quality:

 
   [already said Ron and having such a lovely time with him] 
   well that are there's my have my house you see and 
   um ... and and I had to had a look about it there, and it was 
   good there, but if I thought about another say another ah 
   five years or or like that, I'd say, oh I'd have to get a bit of 
   that and I'd have get more that, and so thing, and so I 
   thought it was really better to have it away at the moment, 
   'cause it was really good there you see, and so I thought I 
   was able to to have the house there, and so now when we 
   can go here together with Ron. Well he was here anyhow, 
   but I think that this is wonderful, because if it's not so well 
   at all we can tell you what ah you know down at the bottom 
   they can tell us you're not so well.... We have a little thing 
   at the for …