| Title: |
‛It's all communication’: Family members’ perspectives on the communication needs for themselves and their relatives with primary progressive aphasia |
| Authors: |
Davies, Katharine; Howe, Tami; Small, Jeff; Hsiung, Ging‐Yuek Robin |
| Contributors: |
Social Sciences and Humanities Research Council of Canada |
| Source: |
International Journal of Language & Communication Disorders ; volume 59, issue 5, page 1946-1965 ; ISSN 1368-2822 1460-6984 |
| Publisher Information: |
Wiley |
| Publication Year: |
2024 |
| Collection: |
Wiley Online Library (Open Access Articles via Crossref) |
| Description: |
Background Communication disabilities, such as primary progressive aphasia (PPA), impact family members as well as the individuals with the condition. To provide adequate communication care to people with PPA (PwPPA) and their family members, it is crucial to understand the communication needs from the family members’ perspectives. To date, research on the communication needs of people with primary progressive aphasia and their family members from the perspectives of family members has been limited. Aims The specific research objectives were to explore (a) the communication needs pertaining to PwPPA in the early, middle and late stages; and (b) the communication needs pertaining to family members of PwPPA in the early, middle and late stages, from the perspectives of family members. Methods & Procedures This study employed a qualitative description approach, underpinned by the pragmatic paradigm. Data collection involved semi‐structured qualitative interviews with eight family members (relatives of four individuals with the logopenic variant of PPA, of two individuals with the nonfluent variant of PPA, of one individual with the semantic variant of PPA and of one individual with mixed PPA). Qualitative content analysis was used to identify codes and categories in relation to the research objectives. Outcomes & Results Qualitative content analysis revealed eight categories of communication needs pertaining to the PwPPA: person‐specific needs; diagnosis and disclosure; general communication difficulties; impact on communication in everyday life; impact on cognition; impact on psychosocial well‐being; impact on person's dignity and autonomy; and future planning. Six categories were identified pertaining to the family members: information about and awareness of PPA; impact of communication difficulties on family/others; increased responsibilities for the family in everyday life; impact on psychosocial well‐being; and future planning. Conclusions & Implications This investigation has expanded our ... |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| DOI: |
10.1111/1460-6984.13042 |
| Availability: |
https://doi.org/10.1111/1460-6984.13042; https://onlinelibrary.wiley.com/doi/pdf/10.1111/1460-6984.13042 |
| Rights: |
http://creativecommons.org/licenses/by-nc/4.0/ |
| Accession Number: |
edsbas.907FD838 |
| Database: |
BASE |