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

ABSTRACT

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.

KEYWORDS:

• Aphasia
• stroke
• community of care
• multilingual
• multicultural
• qualitative

Acknowledgments

Thanks to the many participants and communities who took part in the studies discussed in this article. I would also like to thank the students whose work is included in this paper: Caitlin Longman, Gina Posner, Lara Ramos, Nabeela Amod, Tasmiyah Sacoor, Zandile Mkhwanazi. Tamsyn Bernath co-supervised Lara Ramos’ project and Joanne Neille co-supervised Gina Posner’s study. I owe a great deal of gratitude to the late Claire Penn, a superb teacher, mentor, co-supervisor and collaborator who taught me much over the past 15 years about working with people with aphasia in diverse settings. I am also grateful to Jose Centeno and Beth Armstrong who provided helpful input on earlier drafts of this paper.

Disclosure statement

No potential conflict of interest was reported by the author.