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.

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.