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.

摘要

背景：近年来，服务使用者和支持者/倡导者在医疗保健教育和医疗保健研究中的参与度越来越高，但对失语症患者及其家庭成员的合作所知甚少。

目标：反思并从合作经验中学习，研究十五年来在一所英国大学的背景下，失语症患者及其家庭成员参与的方式。

方法和程序：我们采用了反思性纵向案例研究方法，并在四个关键活动中的文档横断面分析中使用了实施理论中的结构作为敏感概念：对话伙伴计划；更进一步；支持沟通以提高康复参与度；失语症研究合作。然后，我们制作了贯穿整个研究期间的叙述性叙述。通过这个过程，我们作为作者也反思了我们自己的合作经验。

结果和结果：Conversation Partners (CP) 整合到言语和语言治疗实践安排中，是几乎所有后续参与的基础。我们通过由 Connect 推动的资助讲习班——“更远”——深化和加强了 CP 合作的范围。提高我们合作的知名度使我们能够吸引机构支持来开展我们的第一个重大研究项目，失语症患者在强调研究需求、制定和实施干预措施、参与项目监督和帮助方面发挥了关键作用传播调查结果。失语症研究合作始于言语和语言治疗学生与失语症患者之间的合作伙伴关系，并以各种形式继续进行。贯穿本研究期间的四个叙事线索：系统和人员适应性的重要性；领导力的贡献和对连续性的承诺；共同行动和学习的承诺；理解价值的重要性。

结论：失语症患者、家庭成员和学术人员之间的合作是一项集体成就，对学习、谈判和调整的认真关注导致持续参与。未来，协作可能越来越多地通过在线技术进行调解，所有相关人员都必须确保这些都得到稳健和包容性流程的支持。