Contours of the caregiver experience: Social resources and health behaviors in caregiving partners of persons with a spinal cord injury

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.