Nshap caregiver study -- networks, experiences, and health outcomes across the life course

The National Institute on Aging awarded the National Opinion Research Center $2.489 million on September 1, 2026, under the Aging Research program (CFDA 93.866) for a project grant (R01AG102939) titled "NSHAP Caregiver Study — Networks, Experiences, and Health Outcomes Across the Life Course."

The recipient will conduct a comprehensive follow-up study of caregivers participating in Round 5 of the National Social Life, Health, and Aging Project. The project will collect original data using two new instruments: a Care Network Measure to map caregivers' support systems by identifying helpers, roles, and coordination strategies among current caregivers, and a Life History Calendar to record timing, duration, and intensity of every caregiving episode since age 18 for current and former caregivers. For up to three of each respondent's most recent caregiving episodes, the study will elicit in-depth qualitative data on personal experiences, social and emotional context, support dynamics, and decision-making processes within their networks. The study will also collect data for those with caregiving experiences before age 18. Both instruments will include standardized assessments of caregiver burden, task coordination, and strain aligned with the National Health and Aging Trends Study, the National Study of Caregiving, and the Behavioral Risk Factor Surveillance System to generate directly comparable, population-level caregiving metrics. Analyses will leverage NSHAP's longitudinal data on caregivers from previous rounds.

Performance is located in Chicago, Illinois. The period of performance runs from September 1, 2026, through May 31, 2031.

Abstract

Informal caregiving has become increasingly common and demanding, especially for those supporting people with serious illnesses or conditions. To capture how caregivers' support networks evolve and affect their health, we will leverage and supplement round 5 of the national social life, health, and aging project (nshap; 2R01 AG048511-11; waite) with a comprehensive follow-up study of nshap caregivers. We will collect original data using two new instruments: a care network measure (CNM; R56 AG083174; piedra) and a life history calendar (LHC). The CNM will be administered to current caregivers to map their support systems by identifying helpers, roles, and coordination strategies. The LHC will record basic details-timing, duration, and intensity- of every caregiving episode since age 18 for current and former caregivers; then, for up to three of each respondent's most recent episodes we will elicit in-depth qualitative data on personal experiences, social and emotional context, support dynamics, and decision-making processes within their networks (e.g., helper roles and task coordination). We will also collect additional data for those who had caregiving experiences before the age of 18. These qualitative data will undergo content analysis and be quantified. Both CNM and LHC interviews will include standardized assessments of caregiver burden, task coordination, and strain-aligned with the national health and aging trends study (NHATS), the national study of caregiving (NSOC), and the behavioral risk factor surveillance system (BRFSS)-to generate directly comparable, population-level caregiving metrics. Analyses will also leverage nshap's longitudinal data on caregivers collected in previous rounds. Our study pursues three core aims. First, we will collect new data on nshap caregivers, capturing both the networks of current caregivers and the caregiving histories of all current and former caregivers to document experiences across the life course. Second, we will characterize these networks and trajectories to identify common patterns. Third, we will assess how individual and contextual factors shape networks and trajectories, and how these, in turn, influence caregiver health and wellbeing. By conducting this intensive follow-up one year after nshap's fifth round, we will generate a uniquely rich, caregiver-centered dataset that illuminates the long-term impacts of caregiving on health, reveals how shifting needs influence support mobilization, and uncovers social mechanisms that bolster or undermine caregiver resilience. These insights can inform public understanding of the health implications of adult caregiving and guide interventions to strengthen care networks and improve outcomes across the adult lifespan.