The experiences of Māori with aphasia, their whānau members and speech-language therapists

Abstract

The aim of this kaupapa Māori thesis was to describe and analyse experiences of aphasia and aphasia therapy for Māori with aphasia and their whānau members. This was explored from the perspectives of speech-language therapists (SLTs), Māori with aphasia and their whānau members. With disparities for Māori in stroke incidence and outcomes, and worse outcomes for people with aphasia compared to other stroke survivors, investigations into aphasia and its rehabilitation are important for this population. The qualitative methodology of interpretive description was incorporated within the kaupapa Māori research framework. This novel combination was critical to the research, ensuring it was decolonising and transformative, while acknowledging the role of the discipline of SLT. Interviews were conducted with 11 Māori with aphasia and their nominated whānau members, and 10 SLTs across New Zealand (five managers and five clinicians). Participants with aphasia and whānau members described a diverse range of experiences. Aphasia can bring many changes in roles and relationships, thus having a profound effect on whānau. Despite difficulties, whānau can actively manage their situation and support the person with aphasia to participate in their whānau and community. Speaking about their experiences of SLT, participants demonstrated that a strong therapeutic relationship is vitally important. The SLT’s appreciation of the world view of the person with aphasia and whānau, the setting of the therapy and the therapy resources all contribute to the success of the relationship, and therefore therapy. From the SLT perspective, the service provided for Māori with aphasia was determined by individual factors specific to the SLT, the workplace culture and manner of service delivery, and human and non-human resources. These findings revealed that SLTs recognise the need to provide culturally safe services for Māori with aphasia but face many barriers in this. Together, these findings reveal the impact of the cultural and societal context on Māori experiences of aphasia and language therapy. In describing the experiences of Māori with aphasia, from the perspectives of people with aphasia, whānau members, and SLTs, this thesis lays the foundation for future interventional research on this important issue.