Identifying participation needs of people with acquired brain injury in the development of a collective community smart home

Abstract

Purpose: This study explored the personalized and collective participation needs of people with acquired brain injury (ABI) living in a future shared community smart home. Methods: An action research study was conducted with 16 persons, seven with ABI, four caregivers and five rehabilitation or smart home healthcare providers. Twelve interviews and two focus groups were conducted, audiotaped, transcribed and analyzed for content. Results: Seventy personalized and 18 collective participation needs were reported related to daily and social activities. Personalized needs concerned interpersonal relationships, general organization of activities, leisure, housing, fitness and nutrition. Collective needs related mainly to housing, general organization of activities and nutrition. Conclusions: Personalized and collective participation needs of people with ABI planning to live in a community smart home are diverse and concern daily as well as social activities.

Implications for Rehabilitation

• To meet participation needs of people with ABI, the design of smart homes must consider all categories of daily and social activities.

• Considering personalized and collective needs allowed identifying exclusive examples of each.

• As some persons with ABI had difficulty identifying their needs as well as accepting their limitations and the assistance required, rehabilitation professionals must be involved in needs identification.

Keywords:

• Action research
• cognitive assistance
• community-based participatory research
• controlled environment
• nervous system diseases
• participation needs
• residence characteristics
• smart home

Acknowledgements

Authors thank the research assistants Jacinthe Beauregard and Mohamed-Ali Arfa, who contributed to this research project. They also thank the workers at the Rehabilitation Centre for their help during the recruitment process, and to the healthcare providers who participated in the interviews. Finally, many thanks to the residents and their caregivers who agreed to participate in this study, gave their time and expressed their participation needs.

Declaration of interest

This study was financed by the Quebec Rehabilitation Research Network of the Fonds de la recherche du Québec en santé (FRQS) and the Office des personnes handicapées du Québec. The residence is financed by the Société d’habitation du Québec, the Ministère québécois du développement économique, de l’innovation et de l’exportation, the Université de Sherbrooke, the Fondation de l’Université de Sherbrooke, the Fondation Martin Matte and the Caisses Populaires Desjardins de Sherbrooke. Mélanie Levasseur and Nathalie Bier are FRQS Junior 1 Researchers (grant nos. 26815 and 29032, respectively).