Towards a community of care for people with aphasia: Some lessons on working in multicultural settings

• Published in: Aphasiology Vol. 34; no. 11; pp. 1432 - 1450
• Main Author: Watermeyer, Jennifer
• Format: Journal Article
• Language: English
• Published: Abingdon Routledge 01-11-2020; Taylor & Francis Ltd
• Subjects: Aphasia; Caregivers; Community; community of care; Ethics; Globalization; Language; multicultural; Multiculturalism & pluralism; multilingual; qualitative; Qualitative research; Rehabilitation; Speech; Speech-language pathologists; stroke; Therapists; Therapy
• ISSN: 0268-7038; 1464-5041
• DOI: 10.1080/02687038.2019.1702919

Background: Providing aphasia care in multilingual and multicultural settings necessitates increased attention in light of current migration and globalisation patterns. Delivering care that is meaningful and appropriate for people living with aphasia becomes challenging in cases where speech-language therapists are not able to speak the languages of people with aphasia, and in instances where there is a shortage of therapeutic resources. Traditional approaches to aphasia management thus require rethinking. The South African context embodies some of these challenges, with a lack of sufficient speech-language therapists and many unable to speak the languages of the majority population.
Aims: Drawing from a framework of Ethics of Care and extending it to include the notion of community, this paper proposes a model of what a "community of care" might look like for people living with aphasia in diverse contexts. Several examples from a synthesis of qualitative studies conducted in the diverse South African context are used to illustrate and expand on a model of community of care. This work has explored communication opportunities and social activities across a range of community and residential care settings, incorporating the perspectives of people with aphasia, speech-language therapists and community members involved in caring for people with aphasia.
Main contribution: A "community of care" perspective involves a broader conceptualisation of the care team and its contributors, including people such as employed caregivers who can potentially play an important role in the rehabilitation process. Similarly, a broader view of context is required, in particular its role in facilitating or inhibiting communication opportunities through focusing on aspects such as community activities, place of abode, and contextual nuances. "Care" needs to be considered as extending beyond the therapy room or rehabilitation centre, and group therapy may play a particular role in contributing to a sense of community for people with aphasia and meeting cultural needs. Tools such as narrative and ethnographic approaches may facilitate a stronger focus on the lifeworld of the person with aphasia and thus also strengthen a community of care perspective.
Conclusions: A community of care perspective builds on existing approaches to aphasia management that consider the broader context and community. The potential role of the speech-language therapist in enabling a community of care for people with aphasia in multicultural settings is considered.