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Davies, Katharine Taylor

University of British Columbia

The primary progressive aphasias (PPAs) are a diverse group of language-led dementias, characterized by progressive language impairments. The primary avenue of support for the wide-ranging impacts of PPA is the delivery of communication care, which is optimally guided by the communication needs of people with PPA (PwPPA) and their family members. This dissertation explored the communication needs of PwPPA and their family members from the perspectives of three stakeholder groups (PwPPA, family members, and speech-language pathologists (SLPs)), through a series of four studies. The research followed a qualitatively driven mixed methods research design, underpinned by pragmatism and guided by a dominant qualitative description approach. First, a scoping review was conducted, revealing limited research on the topic and a lack of research from the perspectives of PwPPA. To address these gaps, study two explored the perspectives of seven PwPPA and revealed communication needs pertaining to themselves and some needs pertaining to their family members. Study three enhanced our understanding of the communication needs by obtaining the perspectives of eight family members of PwPPA, revealing additional communication needs for PwPPA and their family members. In study four, 14 SLPs provided broad professional perspectives on the communication needs and contextual data surrounding the provision of communication care to this population in British Columbia. In this dissertation’s concluding chapter, the findings from the four studies were triangulated in relation to the dissertation’s research objectives. Eight overarching areas of communication need were revealed pertaining to PwPPA: Person-specific needs, Diagnosis and disclosure, Information, General communication difficulties, Communication in everyday life, Cognition, Psychosocial wellbeing, and Future planning. Six overarching areas pertaining to family members were identified: Family-specific needs, Diagnosis and disclosure, Information, Impact of communication difficulties on family members and others, Psychosocial wellbeing, and Future planning. This dissertation has provided actionable knowledge on the communication needs of PwPPA and their family members, who experience a broad range of communication needs. These findings facilitate the provision of evidence-based communication care from a person and family centred approach and provide a strong platform for further research investigating avenues of meeting the communication needs of PwPPA and their family members.

Text

2024-04-18

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/87871

Audiology and Speech Sciences

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/4.0/