Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

Abstract

Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities.

Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally.

Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs).

Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy.

Conclusion: Family support is important to caregiving appraisals.

Implications: There is a need for including family needs for services within assessments for services and within policy.

Implications for rehabilitation

• Families provide a substantial amount of care for their family members with disabilities.

• More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care.

• Family caregiver support needs should be taken into account within policy and service assessments.

Keywords:

• Caregiving appraisals
• family support
• family unmet needs
• longitudinal study
• Medicaid managed care

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The contents of this article were developed under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant #90RT5020-01–00, 90RT5023-01–00, 90RT50320-01–00, and 90RT5026-01–00. However, those contents do not necessarily represent the policy of the Department of Health and Human Services (DHHS), and you should not assume endorsement by the Federal Government.