Voices Unheard: End-of-Life Experiences of Québec's English-Speaking Informal Caregivers
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| Author/collaborator |
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| Title |
Voices Unheard: End-of-Life Experiences of Québec's English-Speaking Informal Caregivers
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| Abstract |
The author notes that informal caregivers (e.g., a spouse, adult child, or friend) are pivotal in assisting individuals who face health challenges including end-of-life (EOL) decisions and care. Effective communication among all involved is essential for optimal EOL-related care processes and outcomes. In Quebec, she points out that English-speaking patients, and caregivers, being a linguistic minority, can encounter unique challenges due to possible language barriers. Caregiver EOL experiences in this context require further exploration. The author’s qualitative study begins to explore EOL experiences among informal caregivers (N = 16) of a language minority group (English) in Quebec where the majority population is French speaking. Informal caregivers were conveniently recruited by the author from the Community Health and Social Services Network (CHSSN), Senior wellness centers in various regions around Quebec, and Hope & Cope – a volunteer community organization. Inclusion criteria were being at least 18 years old, having access to a phone or computer with Zoom capabilities, self-identifying as English-speaker and being a primary caregiver for someone who died by either MAiD, PSUD, or natural death within the past 5 years. Individual semi-structured (virtual) interviews were conducted with participants and lasted between 60 and 90 minutes. These were transcribed verbatim, and narratives were examined using interpretive description. Findings were structured using the Comprehensive Cancer Experience Measurement Framework, covering four domains. (1) Individual (internal) caregiver experiences: Overall, participants reported needing detailed information about EOL care and facing internal challenges such role conflict, feelings of guilt, and diverse opinions towards EOL decisions. (2) Caregiver-patient shared experiences: Participants emphasized how important shared decision-making was regarding care and death location and the patient’s dependence on the caregiver. (3) Caregiver-family shared experiences: Participants highlighted degrees of family involvement in EOL decisions and support needed from family members other than the primary caregiver, especially while providing care at home. (4) Caregiver-health care system interactions: The fourth domain was the most salient, namely how goal-concordant care (i.e., aligning professional care with patients/caregivers’ goals, beliefs, and values) was construed as key in optimizing the EOL experience and its outcomes. Language barriers further challenged coming to terms with goal-concordant care. Taken together, the author concludes that these findings provide a deeper understanding of participants’ experiences caring for someone through the EOL process and beyond.
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| Type |
Master's thesis
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| University |
McGill University
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| Place |
Montreal
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| Date |
2023
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| # of Pages |
107p.
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| URL | |
| Language |
en
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| Citation |
Albert, Justine. “Voices Unheard: End-of-Life Experiences of Québec’s English-Speaking Informal Caregivers.” Master’s thesis, McGill University, 2023. https://escholarship.mcgill.ca/concern/theses/x059cd83t.
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