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Family-Centered Care in Aphasia

Assessment of Third-Party Disability in Family Members With the Family Aphasia Measure of Life Impact

Grawburg, Meghann; Howe, Tami; Worrall, Linda; Scarinci, Nerina

doi: 10.1097/TLD.0000000000000176
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More than 50 years of research has demonstrated the profound effect that aphasia has on people with the condition and their family members. In the International Classification of Functioning, Disability and Health, the World Health Organization described the impact of an individual's health condition on a significant other as “third-party disability.” Recent research has described how third-party disability can occur in family members of people with aphasia post-stroke. Despite the extensive history and ongoing relevance of these findings, family-centered rehabilitation has been slow to integrate into clinical practice and policy. The aims of this article are (1) to provide an overview of third-party disability in family members of people with aphasia; (2) to consider how third-party disability can be addressed through family-centered care and to identify some of the barriers to family-centered care; and (3) to describe The Family Aphasia Measure of Life Impact (FAMLI), a tool for measuring third-party functioning and disability in family members of people with aphasia, identifying family rehabilitation needs, and measuring outcomes of family-centered care.

Department of Communication Disorders, University of Canterbury, Christchurch, New Zealand (Drs Grawburg and Howe); and School of Health and Rehabilitation Sciences, Faculty of Health and Behavioural Sciences, The University of Queensland, Queensland, Australia (Drs Worrall and Scarinci). Dr Grawburg is now with the Bay of Plenty District Health Board, Tauranga, New Zealand. Dr Howe is now with the School of Audiology & Speech Sciences, Faculty of Medicine, The University of British Columbia, British Columbia, Vancouver, British Columbia, Canada.

Corresponding Author: Meghann Grawburg, PhD, Speech-Language Therapy Department, Bay of Plenty District Health Board, Private Bag 12024. Tauranga 3143, New Zealand (mgrawburg@gmail.com).

This research was supported by a grant from The Tavistock Trust for Aphasia, the New Zealand Speech–Language Therapists' Association, and the College of Science, University of Canterbury. The authors thank Dr Karen Brewer for assistance in manuscript preparation and Dr Chi-Wen Chien for assistance in data analysis.

All the authors have indicated that they have no financial and no nonfinancial relationships to disclose.

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