Caregiver Support in the Context of Multiple Chronic Conditions (Caregiver-Support)

Johns Hopkins University, Baltimore MD

Investigators

Linked publications & trials

Abstract

Abstract Supporting caregivers of adults with multiple chronic conditions to reduce burden, increase resilience and improve quality of life (QOL) is a national healthcare priority. Yet tailoring this support to the priorities of the caregiver is challenging due to limited number of tested interventions as well as the stigmatizing and gender- bound considerations in caregiving, underscoring the need for future research. Dr. Abshire will test the feasibility of a tailored intervention with family caregivers of people with advanced heart failure and at least one other chronic condition. Often HF patients with complex health needs due to multiple chronic conditions have functional limitations requiring a family caregiver (family and unpaid caregivers) and as the difficulty of caregiving tasks and amount of care increases there is an increased risk for worsening caregiver role strain, burden, and impairment of QOL. This study will be based on principles from the Society to Cells Framework, which posits that physiological, individual, family and societal level factors influence resilience, the process of positive adaptation when facing stressors. We will use co-design, which incorporates end users as key stakeholders, including patients and caregivers, in the design, development, execution and evaluation of a project to develop and pilot test a theoretically-derived, person- and family-centered intervention. Using co- design methodology, Dr. Abshire and co-investigators will engage persons experiencing multiple chronic conditions including heart failure, caregivers, healthcare providers and expert interventionists in the development of a caregiver-specific intervention focusing on resilience-building. Partnered with a specialty outpatient cardiology clinic, the Johns Hopkins Heart Failure Bridge Clinic, we will develop a home-based intervention to help caregivers articulate statements of purpose in life, set goals to address fatigue and caregiver burden, provide instrumental support (e.g. benefits check up) and social support to improve self- reported QOL (affective well-being and physical health) from baseline to 16 week follow-up. The pilot study will be a single-masked, two-group, randomized trial (N=45) and will test the feasibility and gauge an initial effect size of the intervention in a racially diverse, low-income urban community. She will also test whether self- reported fatigue and caregiver burden are associated with higher inflammatory cytokines (Il-6 and IL-10) as detected in sweat patches, controlling for covariates. Dr. Abshire uses the period of caregiving as a period in which to leverage resilience. The proposed study is innovative in several critical ways: Supporting caregivers of patients with MCC and HF to discuss their purpose in life, set their own individualized goals, while providing instrumental and social support is both a person- and family-centered approach to improve QOL. Finally, we are using an innovative co-design method which will address a gap in effective interventions to meet the needs of caregivers of a multimorbid, vulnerable population through theory-driven research. This is directly aligned with the NINR mission to develop interventions that reduce illness burden by providing caregiver support.