Research That Matters (January 17 - 20, 2008)

Purpose. Although there is significant variation in the levels of distress experienced by parents of children with disabilities, little is known about age-related differences in the well-being of parents of children with disabilities. Using a sample with a 50-year age range, this paper examines whether the timing of the child's disability in the parent's life course (as indicated by parental age at the onset of child's disability) and the parent's duration in the caregiving role (as indicated by the length of time they have had to adjust since the onset of the child's disability) affect the well-being of parents of children with developmental disorders or mental health problems. Furthermore, we examine the extent to which other disability-related factors (child's coresidence status and the presence of multiple children with disabilities) and sociodemographic characteristics of the parent (parental gender, race, education, marital and employment status) affect the well-being of parents of children with disabilities.

Methods. Analyses are based on data from the second wave of the MIDUS (Midlife in the United States) study, a national probability sample of non-institutionalized adults. Our analytic sample includes parents of children with a developmental disorder (DD; e.g., mental retardation, cerebral palsy, learning disabilities) or a mental health (MH) problem (e.g., schizophrenia, depression, anxiety disorders). Parental well-being was assessed with three indicators: negative affect, psychological well-being, and somatic symptoms. Ordinary least squares regression models were used to examine the effects of parents' and children's characteristics on parental well-being. Models were run separately for parents of children with DD and MH problems.

Results. Both parental age at the diagnosis of the child's disability and the duration of the disability were significantly associated with lower levels of negative affect and greater psychological well-being among both parents of children with DD and parents of children with MH problems. These variables were also associated with fewer somatic symptoms among parents of children with MH problems. Further, parents who had more than one child with disabilities showed greater levels of distress. Parental gender did not have a significant influence in either group, whereas those who were employed showed lower distress in both groups. Other sociodemographic characteristics of parents exerted significant influence on well-being among parents of children with DD only.

Implications. The finding that both the timing in the parent's life course as well as the duration of time that parents have been coping with their child's disability independently affect parental well-being have important implications for social work practice. Our findings suggests that young parents who have a child with a disability are at particularly high risk and likely would benefit from more intensive services and programs that support parents in their caregiving role. In addition, parents who had spent a longer time in the caregiving role had better well-being, suggesting a pattern of adaptation to the challenges of caregiving. Social workers working with support or self-help groups of parents of children with disabilities can use older parents as resources for younger parents by initiating discussions on their experiences and coping strategies.