Uplifts, respite, stress, and marital quality of parents raising children with Downs Syndrome or Autism

Study Aim/Purpose:  This study examined associations between perceived pleasant experiences (referred to as “uplifts”) and amount of respite care used on reported stress and marital quality among mothers and fathers of children with autism spectrum disorder (ASD) and Down Syndrome (DS).

Summary of Methods:  This cross-sectional study collected information using a survey of heterosexual married couples, with parents recruited through ASD and DS organizations and school programs. The final sample consisted of 213 couples (102 with children with ASD and 111 with children with DS). Demographic information was collected using a brief self-report questionnaire. To measure uplifts and stressors, each parent was asked to rate 53 items as either hassles (a measure of daily stress) or uplifts, using a four-point Likert Scale (Hassles and Uplift Scale). Respite use was measured by asking parents how many hours and minutes of respite they received during a typical week during the school year, including any source of planned respite care (e.g., provided by family members, babysitters, or community agencies). Marital quality was assessed by asking each parent to rate their marital quality using a 14-item scale (“Revised Dyadic Adjustment Scale”), which evaluates the consensus, stability, and cohesion of the marital relationship.

The cross-sectional analysis measured direct and indirect associations between reported uplifts and respite care use on reported stress and, in turn, on marital quality of husbands and wives in each group. By linking husbands’ and wives’ survey responses, using an “actor-independence model,” the authors also examined cross-parent effects of one respondent’s uplifts and stress reports on their spouse. The analysis controlled for length of marriage and the age of the child.

Summary of Results:  Although the parents of children with ASD were similar to parents of children with DS in age, length of marriage, and number of children, and in the amount of respite care received, parents of ASD reported significantly higher levels of daily stress, fewer daily uplifts, and lower levels of marital quality. Almost 25% of mothers of children with ASD considered their marriages to be distressed, compared to 10% of mothers of children with DS. Similarly, almost 20% of fathers of children with ASD reported distressed marriages compared to only 2% of fathers of children with DS. Respite care did not directly reduce stress for either caregiver group. However, respite was directly associated with improved marital quality for both mothers and fathers of children with ASD and indirectly associated with improved marital quality for parents of children with DS who individually reported lower daily hassles/stress.

Uplifts were also an important independent variable. For parents with children with ASD, more reported uplifts were associated lower stress levels. Those parents of children with ASD who reported more uplifts and less stress also reported better marital quality. When these husbands reported more uplifts and less stress, there was also a positive partner effect on their wives’ report of marital quality. When mothers of children with DC reported more daily uplift experiences, their husbands had lower stress levels and improved perceptions of marital quality.

Study Limitations (as cited by authors):  As with all cross-sectional analyses, the significant associations identified do not imply directionality or causality. In addition, because the majority of this sample were in their mid-to-late 30s and White, the results cannot be generalized to other demographic groups. Another limitation may be the method of self-reporting stress levels. While husbands reported lower stress levels than wives, the authors suggest that the survey questions may not capture the ways men experience stress. Additionally, the authors suggest that a larger sample size would provide stronger conclusions about cross-partner effects of uplifts and stress.

Authors’ Discussion/Conclusions:  Given the study’s finding of significant differences across caregiver groups, the authors recommend that professionals who work with parents of children with ASD or DS provide interventions that account for differences in family functioning. The authors suggest further research to understand the effect of individuals’ personal resources, such as uplifts, on parental stress and marital quality and how the interrelationships of these variables varies for parents of children with other types of conditions. They also recommend expanded financing to help families access more respite care, so that they can spend more time together and meet their individual needs.