Pamela Durepos1, Sharon Kaasalainen1, Sandra Carroll1,2, Alexandra Papaioannou2,3. 1. a School of Nursing , McMaster University , Hamilton , Canada. 2. b Hamilton Health Sciences Corporation , Hamilton , Canada. 3. c Geriatric Education and Research in Aging Sciences (GERAS) Centre at McMaster University and Hamilton Health Sciences/St. Peter's Hospital , Hamilton , Canada.
Abstract
OBJECTIVES: Caregivers (CG) of persons with dementia have described positive and challenging experiences related to caring for a person with a neurological disease. This study explored perceived benefits and challenges of a unique psychoeducation program provided at end of life (EOL) jointly attended by current and bereaved CGs of persons with dementia, residing in a hospital Specialized Care Unit. METHOD: Semi-structured interviews were held with sixteen participants and analyzed with content analysis. RESULTS: Program benefits were perceived by CGs such as: (i) enhanced emotional well-being, (ii) increased feelings of preparedness for EOL, and (iii) personal growth into role models. Within the organization the program was perceived as promoting relationship-centered care and increasing resources. Challenges such as diverse CG preferences, day-time scheduling and limited involvement of unit staff were perceived as barriers. CONCLUSIONS: This program fills a gap in care for CGs at the critical stage of EOL with continuity into bereavement. Implications for practice include: increasing engagement of unit staff for involvement and tailoring of the program, and translation of the program into alternative settings like long-term care. Policies outlining the support needs and resources for CGs through EOL within and outside the hospital are necessary to ensure access and continuity of care.
OBJECTIVES: Caregivers (CG) of persons with dementia have described positive and challenging experiences related to caring for a person with a neurological disease. This study explored perceived benefits and challenges of a unique psychoeducation program provided at end of life (EOL) jointly attended by current and bereaved CGs of persons with dementia, residing in a hospital Specialized Care Unit. METHOD: Semi-structured interviews were held with sixteen participants and analyzed with content analysis. RESULTS: Program benefits were perceived by CGs such as: (i) enhanced emotional well-being, (ii) increased feelings of preparedness for EOL, and (iii) personal growth into role models. Within the organization the program was perceived as promoting relationship-centered care and increasing resources. Challenges such as diverse CG preferences, day-time scheduling and limited involvement of unit staff were perceived as barriers. CONCLUSIONS: This program fills a gap in care for CGs at the critical stage of EOL with continuity into bereavement. Implications for practice include: increasing engagement of unit staff for involvement and tailoring of the program, and translation of the program into alternative settings like long-term care. Policies outlining the support needs and resources for CGs through EOL within and outside the hospital are necessary to ensure access and continuity of care.
Entities:
Keywords:
Dementia and cognitive disorders; caregiving; psychosocial interventions; qualitative methods
Authors: Andrew Wan; Elaine Lung; Ankita Ankita; Zoey Li; Carol Barrie; Sharon Baxter; Lisa Benedet; Mehrnoush Noush Mirhosseini; Raza M Mirza; Karla Thorpe; Christina Vadeboncoeur; Christopher A Klinger Journal: J Palliat Care Date: 2022-02-24 Impact factor: 1.980