DOI: 10.5061/dryad.02v6wwq4b
title: Contours of the caregiver experience: Social resources and health behaviors in caregiving partners of persons with a spinal cord injury

description: Background and rationale: Informal caregiving is highly prevalent in
 Switzerland and in the long-term associated with chronic stress as
 evidenced by its negative effects on caregivers health and well-being. To
 date, most of research on informal caregiving has been focused on the
 elderly. Yet, the evidence from these studies may not be applicable and
 misinform policy in context of physical disabilities, which may further
 concerns younger-aged caregivers. Spinal cord injury (SCI) is an exemplary
 condition for the enforced need of long-term informal care that oftentimes
 occurs in middle-age. To better understand the mechanisms behind the
 health-adverse effects of caregiving, a improved understanding of the
 interplay between social and behavioral factors and the caregiver
 experience is needed. This project was a follow-up of the longitudinal
 pro-WELL study (pro-WELL 1), which investigated associations of productive
 activities and social relationships with health and well-being in persons
 with SCI and their caregiving partners (SNSF Project 100017_153256/1).
 Using the follow-up funding by SNF (pro-WELL 2) we further explored the
 pro-WELL data to foster a  comprehensive understanding of the
 caregiver experience, also to promote the discussion and transfer of the
 gained knowledge to stakeholders. Objectives: The overall objective of
 this pro-WELL follow-up study ("pro-WELL 2") was to explore the
 relationship of social and behavioral factors with the caregiver
 experience to better understand the causal pathway linking the caregiver
 experience with health and well-being of the caregiving partners of
 persons with SCI. The specific aims were to investigate 1) whether
 socioeconomic conditions shape the caregiver experience, 2) whether social
 relationships moderate the association between the caregiver experience
 and health, and 3) whether the caregiver experience has an effect on
 health behaviors in the caregiving partners of persons with SCI. Using the
 evidence gained by pro-WELL 1 and 2, we aimed to conduct stakeholder
 dialogues in order to develop strategies to support burdened caregivers
 within the network of the Swiss Paraplegic Group. Methods: Pro-WELL is an
 observational longitudinal survey with three measurement waves. Data
 collection was completed in January 2017 and n=133, n=123, and n=119
 couples participated at baseline, month 6 and month 12, respectively. The
 analyses were based on longitudinal dyadic data from the caregiving
 partners of persons with SCI that completed at least two waves (n=123). We
 applied multivariable regression modelling and path analysis to explore
 the research questions. Results: We demonstrated that caregivers with
 lower socioeconomic status reported a higher burden of care (Tough,
 Brinkhof, Siegrist, Fekete 2020, Int J Equity Health), provided
 evidence that social support moderates the association between the
 caregiver burden and health (Tough, Brinkhof, Fekete. submitted), and
 showed that the caregiver burden negatively affects specific health
 behaviors (Tough, Brinkhof, Fekete 2020, Health Psychology Behav
 Med).  Discussion: This study was among the first to investigate
 the social and behavioral factors related to the caregiver experience, and
 to evaluate possible pathways through which the caregiver experience may
 impact upon health and well-being in middle-aged caregivers of persons
 with a physical disability. This study identified targets for
 interventions aimed at improving the caregiver experience with the
 ultimate goal to contribute to caregivers' health and well-being. The
 results of the pro-WELL 2 study were used to inform stakeholder dialogues
 on the current needs and potential actions to improve the situation of
 informal caregivers in Switzerland.
description: Pro-WELL is an observational longitudinal survey with
 three measurement waves. Data collection was completed in January 2017 and
 n=133, n=123, and n=119 couples participated at baseline, month 6 and
 month 12, respectively. Couples consisted of one person with a spinal cord
 injury and their caregiving romantic partner. Participants
 could choose between three different response modes, namely paper-pencil
 questionnaires, online questionnaires, or telephone interviews.