Caregiver strain and quality of life: exploring the moderating role of caregiver age in an I/DD context

Abstract

The number of diagnosed cases of intellectual and developmental disabilities (I/DD) has risen in the last few decades, and advances in healthcare and support services have increased the life expectancy for this population. Policy changes promoting residential choice have resulted in more people with I/DD living at home with aging family caregivers. Caregiving for offspring with I/DD can lead to caregiver strain, which affects the quality of life (QoL) of both the caregiver and the family unit. While research on caregiver strain and its impact on QoL is growing, the moderating role of caregiver age and perceptions of mutuality remain underexplored. Aging caregivers face unique barriers compared to younger caregivers, and mutuality has been shown in other research contexts to mitigate caregiver strain, though this may vary across the life course. This explanatory-sequential mixed-methods study utilized Family Systems Theory and the Strengths and Vulnerabilities Integration (SAVi) model to examine caregiver age and mutuality as moderators in the relationship between caregiver strain and QoL. The study also investigated potential interactions between caregiver age and mutuality to explore whether mutuality’s moderating role evolves over time. Quantitative data was collected through a cross-sectional online survey with n=186 participants. Sixteen participants who completed the online survey were then invited to engage in semi-structured interviews for qualitative data collection, selected based on their age and responses to the quantitative survey. Qualitative data were analyzed in conjunction with quantitative findings. Moderation analyses indicated that caregiver age and mutuality alone did not moderate the caregiver strain-QoL association. However, there was a three-way interaction between caregiver strain, age and mutuality suggesting that higher mutuality levels weakened the association between caregiver strain and QoL–but only among younger caregivers. Qualitative data both supported and expanded quantitative findings. Specifically, caregivers of all ages reported significant strain; however, their experiences varied. Older caregivers described more physical strain than younger caregivers, indicating a greater need for tangible support. Recommendations are proposed for measurement approaches, policy development, and programmatic interventions. Keywords: intellectual and developmental disabilities (I/DD), caregiver strain, mutuality, caregiver age, family systems theory, strengths and vulnerabilities integration model (SAVi), moderation analysis, semi-structured interviews, mixed methods, explanatory sequential. ☐ Keywords: intellectual and developmental disabilities (I/DD), caregiver strain, mutuality, caregiver age, family systems theory, strengths and vulnerabilities integration model (SAVi), moderation analysis, semi-structured interviews, mixed methods, explanatory sequential.