Assessing the long-term impact of aphasia center participation

McCall, Denise Marie and Szabo, Gretchen and Holland, Audrey (2014) Assessing the long-term impact of aphasia center participation. [Clinical Aphasiology Paper]

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Abstract

Comprehensive aphasia centers are a growing trend in North America and have begun to influence service delivery for individuals with aphasia and their families. Such centers are grounded in group interaction and are intensive in terms of participation time. Consistent with principles of Life Participation Approaches (LPAA, 2001), centers incorporate programming across a range of experiences and activities, including conversation groups, technology and interactive programming (e.g., Skyping across centers), as well as outreach initiatives. Early examples include The Aphasia Institute in Toronto, the Aphasia Center of California, and Connect in London (Elman, 2007a). Simmons-Mackie and Holland (2011) conducted a survey that identified 33 such centers, with the majority opening in the preceding 10 years. Since that date, these authors estimate that at least 8 new centers have been developed and staffed. There are many obstacles to collecting effectiveness data in aphasia centers such as those described above. Heterogeneity of programming is an obvious one, compounded, in most cases, by limited professional staff and reliance on trained, but not necessarily equally talented volunteers for a substantial number of activities. Weather, transportation issues, self-selection of activities that are of interest to individual members, moving, illnesses and vacation schedules, as well as the very positive decision that members’ lives have moved beyond the type of support provided by Center programming, also contributes to heterogeneity. Finally, time and resources for collection of pre- and post-involvement data are typically limited, and research participation in most aphasia centers is voluntary. Nevertheless, we believe that, in much the same ways that data can be gathered across public schools to demonstrate their effectiveness, consistent data can be gathered to support the value of aphasia centers. It seems reasonable to assume that the relatively well-documented benefits of participating in an aphasia group would apply to aphasia centers (Avent, 1997; Elman, 2007a, b; Elman & Bernstein-Ellis, 1999). However, direct research on the impact of aphasia centers is limited (Hoen, Thelander, & Worsley, 1997; Van der Gaag et al., 2005). This presentation will describe the long-term impact of participation in programming at two well-established1 community-based aphasia Centers, referred to here as Centers A and B. Both provide two full days of programming for 6-8 hours weekly, with additional time spent in socializing and operate on three fifteen week terms each calendar year. They share similar philosophies, and are of somewhat similar size in terms of participants and staff directly involved in their programs. A similar core assessment battery is used at both centers. This paper will present results of initial and one and two year follow-up data concerning the effects of involvement at both sites.

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