A qualitative investigation into third-party functioning and third-party disability in aphasia: Positive and negative experiences of family members of people with aphasia

Abstract

Background: In the International Classification of Functioning, Disability and Health (ICF), the World Health Organization introduces the term “third-party disability” and identifies the need for further investigation into family members’ Functioning and Disability in relation to a significant other's health condition.

Aims: This qualitative investigation represents the first phase of a mixed methods study to develop a tool for measuring third-party functioning and third-party disability in aphasia. The aims of this phase of the study were to explore: (1) the positive aphasia-related changes associated with third-party functioning, and; (2) the negative aphasia-related changes associated with third-party disability, as experienced by family members of adults with aphasia post-stroke.

Methods & Procedures: This study used an inductive design with a qualitative descriptive research strategy to explore the lived experience of having a relative with aphasia. Twenty family members (e.g., spouses, parents, children, siblings, etc.) of individuals with aphasia participated in individual in-depth semi-structured interviews. The interviews were analysed using qualitative content analysis.

Outcomes & Results: Analysis revealed five categories of positive aphasia-related changes associated with third-party functioning: (1) emotions; (2) communication; (3) relationships; (4) recreational activities and social life; and (5) paid/volunteer work or education. In addition, seven categories of negative aphasia-related changes associated with third-party disability were revealed: (1) physical, mental, and emotional health; (2) communication; (3) relationships; (4) recreational activities and social life; (5) paid/volunteer work or education; (6) domestic and caregiving responsibilities; and (7) finances.

Conclusions: Interpreted within the framework of the ICF, this study showed how the pervasive effects of aphasia are associated with changes in Functioning and Disability in family members, providing a holistic description of family members’ experience using the standardised language of the ICF. Clinically, these results emphasise the importance of recognising the positive and negative outcomes for close family members in the development of a rehabilitation plan for the family to address their experience of third-party disability.

Keywords:

• Aphasia
• Stroke
• Family members
• Third-party disability
• ICF
• Qualitative interviews

Acknowledgments

The authors acknowledge the participants, especially the family members for sharing their stories. This research was supported by a grant from the New Zealand Speech-language Therapists' Association. Emerging findings from this study were presented at the 8th Asia-Pacific Conference on Speech, Language and Hearing 2011, the Aphasia Association of NZ Biennial Conference 2011, and the symposium on the World Report on Disability: Implications for Asia and the Pacific.