While we have developed a rich knowledge base on family caregiving to frail elders, as well as on interventions designed to support caregivers, most research to date has focused on the primary, geographically proximate caregiver. Yet, it is estimated that as many as 11% of family caregivers in the U.S, and 9% of those providing care to persons with dementia, live more than two hours away from the care receiver. We have little in-depth knowledge about this growing phenomenon, especially as it applies to caregivers across diverse SES and racial/ethnic groups. This R21 application seeks to extend the scope of prior discoveries regarding family care to impaired elders by specifically focusing on the long-distance caregiver (LDC). The long-term goal of the proposed research program is to develop a knowledge base that will be used to adapt existing evidence-based caregiver interventions (e.g., REACH models) to the needs of LDCs and, ultimately, to test adapted models in the field. This R21 application is the first step in this process; with the project goal of examining LCD experiences in-depth to understand how LDCs, deal with, and are affected by, the structural constraint of distance and how the experience differs by key characteristics. The specific objectives are: (1) To examine the long-distance caregiving consequences (i.e., caregiver well-being, service needs) and identify subgroup differences related to ethnic and socioeconomic status, gender, distance to the care recipient (travel hours), the cultural value of familism, and cognitive status of the elder. (2) To identify the primary stressors (e.g., caregiving involvement and burden) and secondary stressors (e.g., work/family conflict) experienced by LDCs, the strategies employed to deal with these stressors and to identify subgroup differences. (3) To determine the internal and external resources (e.g., coping skills and social support) which mediate the association between primary and secondary stressors and caregiving outcomes, including models with travel distance, ethnic/socioeconomic status, gender, familism, and elder cognitive status as important exogenous factors. (4) In order to determine how, if at all, recruitment strategy may influence findings, to explore differences in caregiver well-being and service use between our primary sample of LDCs to elders linked to formal services and a secondary sample of LDCs recruited from a representative community panel. The innovation of this research lies in its unique sample (diverse ethnic and SES LDCs with primary/shared responsibility) and focus on issues most relevant to LDCs (e.g., communication, technology) rather than measures/methods. In-depth telephone interviews will be conducted with 300 LDCs (2+ hrs. travel) who are primary/co-primary caregivers to an ethnically/racially diverse sample of elders who receive formal residential or home-based long-term care services. A secondary sample (n=50) will be drawn from a representative community-based sample of middle- age and older adults. A mixed method design is used, with open and structured parts of the interview and corresponding qualitative (thematic) and quantitative (SEM) approaches to data coding and analyses.
Family caregiving to the frail elderly is an important public health issue given the profound physical and emotional consequences typically involved in providing care. While prior research has focused on geographically proximate caregivers, this proposed R21 developmental project will begin to close a major knowledge gap in caregiving research by providing an in-depth examination of long-distance caregiving, including: the unique stressors they experience; the factors that promote or hinder distance caregiving and influence caregiver well-being; and the communication and coordination challenges between formal care providers and long-distance caregivers (LCDs). This knowledge base can then be used to inform policy, design and test interventions adapted to the needs of the LCD, maximize innovation, and foster an evidence- based response to the needs of this growing group of caregivers to frail elders.
