Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Abstract

Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference.

Methods: The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking.

Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%).

Conclusions: People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research.

Implications for Rehabilitation

• Important outcomes for people with aphasia and their families span all components of the ICF.

• The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia.

• The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF.

• The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

Keywords:

• Aphasia
• family caregivers
• ICF
• patient involvement
• patient-relevant outcome
• treatment outcome

Acknowledgements

The authors would like to acknowledge the invaluable contribution of the people living with aphasia who participated in this research. Many thanks also to Aileen Thompson and Netcare Rehabilitation Hospital, Johannesburg, South Africa; The Houston Aphasia Recovery Center (HARC), Houston, USA; Self Help Group for the Brain Damage (SHGBD), Hong Kong; Center for Rehabilitering og Specialrådgivning (CRS), Odense, Denmark; Karen Sage (University of the West of England, Bristol, U.K.); The Stroke Association Communication Support Groups of the West of England, UK; and the participating rehabilitation institution of the Center for Interdisciplinary Research in Rehabilitation of Greater Montreal, Canada for their assistance with recruitment and data collection as well as Carole Anglade and Michèle Masson-Trottier. The authors acknowledge the use of The University of Queensland’s Communication Research Registry (www.crregistry.org.au) in recruiting participants in Australia.

Disclosure statement

The authors have no other declarations of interest to report.

Funding information

This work was supported by an Australian Postgraduate Award (APA) scholarship awarded to Sarah J. Wallace.