Beliefs and attitudes of family caregivers of People with dementia toward advance care planning: A Q methodology study.

Abstract

Background: Family caregivers' perspectives for advance care planning (ACP) are critically important to reflect the end-of-life wishes of people with dementia. Culture can influence ACP practice and people's perspectives toward it. Little is known about family caregivers' perspectives toward ACP in Asian countries, especially in Korea. Purpose: The purpose of this study was to explore beliefs and attitudes toward ACP among family caregivers of people with dementia. Methodology: Using a Q methodology, 28 statements (Q sample) were constructed through an extensive literature review to capture the beliefs and attitudes toward ACP in family caregivers. The P sample (25 family caregivers) completed each grid with a statement in Q sorting table. Data analysis was done using the PQ Method program (Ver. 2.35). Results: Three types emerged from 24 caregivers through a Varimax rotation and explained 53% of the total variance. One caregiver fell into a non-significant for any of the three types. Type 1 (ACP benefit- and patient-caregiver wish-driven caregivers) hold positive attitudes toward pre-care planning and the benefits but lack of respect for the preferences of people with dementia. Type 2 (Well-dying- and dignity-pursued advocators) recognized ACP as a dignity-preserving approach but had concerns about pre-care planning and felt the burden for management of people with dementia. Type 3 (Patient autonomy supportive surrogates) perceived the importance of respecting the preferences of people with dementia and the roles of family caregivers in ACP care. Conclusions: Differences in the perspectives toward ACP of family caregivers have emerged. It is crucial to develop tailored interventions for each type to optimize ACP care for people with dementia and implement them as early as possible after onset to reduce patient suffering and caregiver burden, enhance dignified death, and improve quality of life.