The Social Psychology of Caregiving: Physical and Psychological Costs of Providing Support to the Disabled¹

Abstract

The emphasis of much of the existing research on social support‐health relationships has been on the availability and impact of support on the recipient, but social psychologists have paid little attention to the costs to the caregiver of providing that support. In an earlier study (Schulz & Decker, 1985), we found that the long‐term coping of individuals experiencing chronic disability as a result of spinal‐cord injury was facilitated by the availability of a primary support person, or caregiver. In this study we examined the determinants of well‐being of the primary caregiver of the middle‐aged and elderly spinal‐cord‐injured persons. Psychological well‐being, life satisfaction, and depression were the dependent measures. The availability of social support, social contact, and feelings of control over one's life were important determinants of caregiver well‐being, even after controlling for health and income. In addition, the amount of time spent each day assisting the disabled person was a strong independent correlate of depression, and the extent to which the caregiver felt burdened by the victim was significantly and negatively related to life satisfaction. These results are discussed in the context of a comprehensive stress‐coping model. Since data were available from both disabled individuals and their primary support persons, we had the unique opportunity to compare the perspectives of both those giving and receiving daily care. We found no relationship in levels of psychological well‐being and depression reported by the disabled person and caregiver; however, caregivers attributed to the victims affective levels similar to their own.

Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji

“…The mean psychological well-being score on the IPWB for the caregivers in this study were relatively high in reference to the suggested cutoff value of 3.77 for the general population, 14 and the mean scores of 3.91 for the caregivers of SCI persons. 16 This indicates that caregiving is a stressful experience. Depression, anxiety and poorer psychological well-being have been a common finding in studies evaluating the caregivers of SCI persons.…”

“…These findings are consistent with other studies, which have identified level of assistance provided in ADL and the number of hours spent providing support for the SCI person as strong contributors of caregiver burden. 16,19 However, there was no relationship between the caregiver burden and the time till which caregiving had been provided. Family support toward the care of the SCI persons was highly evident in this study.…”

“…15 Index of Psychological Well-Being has been used in the caregivers of persons with SCI. 16 Berkman 14 reported a mean score of 3.77 for a general population, whereas Schulz et al 16 reported a mean score of 3.91 for their caregiver sample and 4.04 for the SCI sample.…”

Burden of support for partners of persons with spinal cord injuries

“…As stated before, most other studies have not used caregiver burden measures but used psychological distress and quality of life measures. Schulz et al 20 reported that the level of assistance provided in daily living activities and hours per day spent assisting the persons with SCI were strongly correlated with depression of caregivers. However, two studies in nonwestern countries, Turkey and South India, did not find significant relationships between severity of the injury or secondary conditions with caregiver's distress or quality of life.…”

“…For this reason, it is not easy to interpret the sometimes conflicting results regarding the impact of severity of the injury, secondary conditions and the impact of duration of the injury. Unalan et al, 16 for example, found no correlation between the seriousness of the SCI and complications and caregivers' quality of life, whereas Schulz et al 20 reported that the amounts of assistance provided for the persons with SCI were strongly correlated with depression of caregivers. Further, most studies used small sample sizes 14,16,18 or used mixed samples of partners, other family members, nonfamily members or professional caregivers.…”