Using partners' autobiographical reports to develop, deliver, and evaluate services in aphasia

Abstract

Four women whose husbands had aphasia were asked to talk about their lives in several indepth interviews. Themes from their accounts were used to plan, deliver, and evaluate a support course. Themes from their initial interviews were used to create a course plan containing skill training, provision of information, and discussion topics. Themes emerging from their reports during course discussions provided a means for participants to explore and problem-solve their current issues. Evaluation of the course was based on themes drawn from two post-course interviews. Findings suggest that (1) aphasia affected these four participants differently, (2) themes from autobiographical reports were useful in planning content of a course to assure its relevance, (3) issues raised by participants during the course served to assure course relevance in its delivery, and (4) autobiographical descriptions offered a way of discovering whether and how the course experience had an ongoing impact on the lives of the participants. It is concluded that the collection and analysis of autobiographical reports provide an effective way to design, deliver and evaluate learning in a support course for partners of those with aphasia.

Addressing the long-term impacts of aphasia: how far does the Conversation Partner Programme go?

“…Other positive experiences included a sense of achievement, "I got on famously"; pride, "I feel proud if I help the students" and a belief that the CPP was valuable to both partners, "It was good for me," and "they got better with experience" reflects important feelings of self-worth and connection when one considers the risk of secondary disability for people with chronic communication disability (Proctor, 2001). While the literature clearly acknowledges the impact of aphasia on family members and friends (Halle et al, 2011;Pound et al, 2001;Sorin-Peters & Patterson, 2014), it is noteworthy that the co-researchers in this study in response to the question "How does aphasia affect me and my family?" focused on the importance of family support in helping them adapt to life with aphasia -"family support is very important" rather than on how family members were affected by aphasia.…”

“…focused on the importance of family support in helping them adapt to life with aphasia -"family support is very important" rather than on how family members were affected by aphasia. In future studies to explore the impact of aphasia on family members from the emic perspective of the person with aphasia, co-designing a question related to the adaption of family to "living with aphasia" (Pound et al, 2001) may stimulate the generation of more specific data.…”

“…Through qualitative research the insider perspective or emic perspective (Creswell, 2013) of aphasia is emerging, and people with aphasia (PWA) are teaching us about the lived experience of aphasia (Simmons-Mackie & Lynch, 2013). This emic perspective (Creswell, 2013), has taught us that adapting to life with aphasia and re-negotiating normal activities of daily living (e.g., finances, housework, work, social life, and leisure interests) is more difficult in the presence of a communication disability (Parr, Byng, & Gilpin, 1997;Pound, Parr, & Duchan, 2001). We know from previous research that family and friends can become anxious about communication, and attempts at normal conversation may result in feelings of fatigue, discouragement, and sadness (Le Dorze & Signori, 2010;Michallet, Tétreault, & Le Dorze, 2003).…”

“…Dealing with the uncertainty about the meaning of stroke and aphasia in terms of personal identity, relationships, professional and financial status are long term challenges (Dalemans, de Witte, Wade, & van den Heuvel, 2010;Pound et al, 2001). We need to co-design rehabilitation goals and develop interventions that help the person with aphasia and his/her family experience successful communication (Barrow, 2011).…”

“Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study”

“…To what extent the experiential knowledge of PWA is included in programme evaluation and redesign varies greatly. This study offers (1) a multi-perspectival evaluation of a conversation training intervention from the emic experiences of participants; (2) an innovative participatory health research approach for service design, development, and evaluation that is consistent with the living with aphasia framework (Byng & Duchan, 2005;Pound, Duchan, Penman, Hewitt, & Parr, 2007;Pound, Parr, & Duchan, 2001); and (3) an illustration of how to use PLA to include PWA and other key stakeholder groups as participants and co-researchers throughout the research process.…”