Assisted living (AL) is the fastest growing segment of the long-term care industry and preferred greatly over the more costly and medical nursing home environment. Informal caregivers play a critical role in residents' ability move to and remain in these non-medical residential care settings and also affect residents' and caregivers' quality of life. Our recent work shows that most AL residents have care convoys that include family and friends and evolve in response to resident decline and family, friend, and facility transitions. In recent years, however, AL residents have grown older and frailer and require higher levels of care, a trend that is apt to alter the demand for informal care and the configuration of care roles. Informal caregivers typically are adult children and occasionally spouses, who may have multiple competing demands and may be experiencing their own health problems. Some residents lack these traditional helpers and may rely on other family and friends or have no one. Despite the changing needs of this population and variations in the availability of support, as well as the significant public health and policy implications of learnig how to develop collaborative care partnerships in AL, research has yet to address fully the complexity of informal care in these settings, particularly how it is organized among and between care partners and unfolds over time. The overall goal of this five-year study is to learn how to support informal care and care convoys in AL in ways that promote residents' ability to age in place with optimal resident and informal and formal caregiver quality of life.
The specific aims are: (1) To understand how informal care in AL is experienced, organized, and negotiated within care convoys over time; (2) To understand the factors that influence informal care work in AL and how they operate to support or hinder the development of care partnerships that promote aging in place with optimal resident and informal and formal caregiver quality of life; and (3) To determine successful strategies for building care partnerships in AL. This study will use participant observation and informal and formal interviewing in 8 AL settings that vary by key individual-, facility-, and community-level factors, collecting data in 2 waves of 4 sites each Fifty residents diverse in age, marital and parental statuses, race and ethnicity, and cognitive and physical functioning will be purposively selected, interviewed, and followed over 24-months. Their convoy members also will be identified, interviewed, and followed over the same time period. Following residents' care convoys prospectively will enhance understandings of care as a dynamic process and shed light on the ways families and friends negotiate amongst themselves and with other convoy members, including paid care workers. Grounded Theory Method will guide data collection and analysis, which will provide significant insight into the car process. This knowledge will help us identify strategies for developing and supporting collaborative care partnerships between informal and formal caregivers and recipients.
This five-year qualitative study will focus on informal caregiving in AL as it unfolds prospectively over time from the perspectives of residents and their paid and unpaid caregivers and fill critical knowledge gaps. The study will advance understanding of long-term care, contemporary family life, and social relationships and will provide significant theoretical, methodological, and empirical insights that researchers, health care providers, practitioners, and policy makers can use to improve the health and well-being of the growing numbers of frail elders and that of their paid and unpaid caregivers. Findings will help to create collaborative care partnerships that will support AL residents' aging in place, positively influence quality of life for this escalating population of frail elders and informal an formal caregivers, and ultimately and reduce unwanted and expensive nursing home moves.
|Kemp, Candace L; Ball, Mary M; Morgan, Jennifer Craft et al. (2016) Exposing the Backstage: Critical Reflections on a Longitudinal Qualitative Study of Residents' Care Networks in Assisted Living. Qual Health Res :|