Family involvement within assisted living: Care-receivers' and caregivers' roles and relationships

Family systems providing informal care and support to their aging relatives, who were residing in assisted living systems and receiving formal care were central to this study. A broader understanding of family involvement, with respect to exploring both care-receiver and caregiver roles and relationships, within the regulatory and environmental context of assisted living was sought through a qualitative research process. This study employed a phenomenological approach to conduct in-depth interview sessions with eight pairs of participants, comprising elderly residents in five assisted living facilities and their respective caregiving family members, typically a daughter or son and, in one case, a close friend, all of whom were personally interviewed. A total of 16 participants were interviewed individually. The three dominant themes that emerged from care-receivers and their caregiving relatives' experiences, which characterized and impacted their family involvement, were (1) Coping efforts and attitudes that characterize the aging, the care-receiving, and the caregiving processes; (2) Enduring and changing roles and relationships in family systems; and (3) The paradox of institutional long-term care, as it created both relief and stress for elderly care-receivers' and their caregivers in family systems. A systems/ecological framework is applied to explicate these findings, and policies pertaining to assisted living, and their economic implications for the long-term care process are also discussed.