Family caregivers are the backbone of the healthcare system. Over time, caregiving takes a tremendous toll on the caregiver. This is particularly true for caregivers who (1) provide >21 h of care/week, and/or (2) support those experiencing depression, cognitive decline, aggressive behaviours, and life-limiting conditions requiring complex care. Many caregivers face deteriorating physical and mental health, social isolation, family conflict, and job loss. Caregivers often have little energy or time to access resources and their experiences with the healthcare system, healthcare professionals and service agencies can either buoy them through challenging times, or contribute further to their distress.
This project aimed to hear the voices of family caregivers; their challenges, struggles, joys, and motivation for persevering through hardship, as well as their recommendations regarding education, resources, and supports that might enhance their resilience.
This community engagement research project utilized an ethnographic, qualitative approach involving three, 2-h focus groups that were analyzed using thematic analysis.
Caregivers identified barriers to resilience, including demands on their time, changing roles and responsibilities, challenges of learning about medical conditions, their own emotional responses, financial strains, changing family dynamics, and personal health. Caregivers also identified several facilitators to resilience, including motivations for caregiving, sense of purpose and validation, spirituality, emotional experiences, and coping strategies.
Caregivers recommended that educational opportunities, including increasing health care providers education concerning dementias, increased access to resources, system navigators, financial supports, political advocacy, and a more responsive caregiver centered system would support family caregiving.