From home to ‘home’: Mapping the caregiver journey in the transition from home care into residential care

摘要

Abstract Family caregivers play a pivotal role in supporting the functional independence and quality of life of older relatives, often taking on a wide variety of care-related activities over the course of their caregiving journey. These activities help family members to remain in the community and age-in-place for as long as possible. However, when needs exceed family capacities to provide care, the older family member may need to transition from one care environment to another (e.g., home care to nursing home care), or one level of care to another (from less intense to more intensive services). Drawing upon qualitative interview data collected in a populous health region in British Columbia, Canada, this study explores the roles and responsibilities of family caregivers for family members making the care transition from home care to residential care. A thematic analysis of the interview transcripts resulted in the development of a conceptual framework to characterize the “Caregiver Journey” as a process that could be divided into at least three phases: 1) Precursors to transition - recognizing frailty in family members and caregivers prior to transition; 2) Preparing to transition into residential nursing home care (RC) and 3) Post-transition: Finding a new balance - where caregivers adjust and adapt to new caregiving responsibilities. Our analyses revealed that the second phase is the most complex involving a consideration of the various activities, and roles that family caregivers take on to prepare for the care transition including: information gathering, advocacy and system navigation. We conclude that there is a need for family caregivers to be better supported during care transitions; notably through ongoing and enhanced investments in strategies to support caregiver communication and education. Highlights ? For?family caregivers, the caregiving journey from home care into residential care involves three distinct phases. ? The second phase is the most complex involving actions related to: information gathering, advocacy and system navigation. ? Family caregivers need access to more information on resources, and regulations through all stages of the care transition.