In it for the long haul: a reflective account of collaborative involvement in aphasia research and education

Abstract

ABSTRACT Background: The involvement of service users and supporters/advocates in healthcare education and healthcare research has developed an increasingly high profile in recent years, but relatively little is known about collaborations involving people with aphasia and family members. Aims: To reflect on and learn from the experience of collaboration, examining the ways in which the involvement of people with aphasia and family members was carried out over a fifteen-year period in the context of a UK university. Methods and procedures: We have taken a reflective longitudinal case study approach, and used constructs from implementation theory as sensitizing concepts in a cross-sectional analysis of documents in four key activities: the Conversation Partner scheme; Reaching Further Out; Supported Communication to Improve Participation in Rehabilitation; the Aphasia Research Collaboration. We then produced narrative accounts which run through the whole period of the study. Through this process, we as authors also reflected on our own experiences of collaboration. Outcomes and results: Conversation Partners (CP), integrated into the speech and language therapy practice placement, was the basis for almost all subsequent involvement. We deepened and strengthened the scope of the CP collaboration through funded workshops – Reaching Further Out – facilitated by Connect. Increasing the visibility of our collaboration enabled us to attract institutional support to develop our first major research undertaking, where people with aphasia played a key role in highlighting the need for the study, developing and implementing the intervention, taking part in project oversight, and helping disseminate the findings. The Aphasia Research Collaboration began as a partnership between speech and language therapy students and people with aphasia and has continued in various forms. Four narrative threads run through the period of this study: the importance of systems and people being adaptable; the contribution of leadership and commitment to continuity; a commitment to act and learn together; the importance of understanding value. Conclusions: Collaboration between people with aphasia, family members, and academic staff has been a collective accomplishment, where careful attention to learning, negotiation and adjustment have led to sustained involvement. In the future, where collaborations may be increasingly mediated through online technologies, all those involved must ensure that these are supported by robust and inclusive processes.