Impact of Sociodemographics and Home and Community-Based Services on the Wellbeing of Rural Caregivers of Children and Youth With Special Healthcare Needs: An Exploratory Study.

BACKGROUND

Caregivers of children and youth with special healthcare needs (CYSHCN) often experience significant challenges accessing home and community-based services (HCBS), resulting in psychological distress, increased burden and decreased caregiver wellbeing. However, little is known about the associations between HCBS access and caregiver wellbeing in rural areas. Therefore, the purpose of this study was to (1) explore the associations between caregiver and child sociodemographic characteristics and HCBS access on caregiver wellbeing in a rural context and (2) add additional empirical support to an emerging theoretical framework.

METHODS

This exploratory cross-sectional study used convenience sampling to recruit caregivers of CYSHCN (N = 162) from the north central Appalachian region of the United States. Electronic surveys included items related to sociodemographics and HCBS, along with the Depression, Anxiety, and Stress Scale, Post-Traumatic Growth Inventory, and Meaning in Life Questionnaire, which were guided by an emerging theoretical framework.

RESULTS

Most caregivers reported caring for CYSHCN ages 2-17 (72.8%) with moderate-to-severe functional limitations (73.3%). Overall, caregivers reported mild-to-moderate depression, anxiety and stress; a medium-to-high degree of posttraumatic growth (PTG); and a greater presence of meaning in life. Caregiver wellbeing was associated with various sociodemographic characteristics and access to HCBS. Although challenges with HCBS access were related to psychological distress, they were also associated with PTG and meaning in life.

CONCLUSIONS

Caregivers who experienced psychological distress and challenges accessing HCBS also experienced PTG and meaning in life. Findings warrant therapeutic interventions designed to leverage caregiver empowerment and resilience, while exploring innovative care delivery methods in rural communities to improve health equity.