Respite care, stress, uplifts, and marital quality in parents of children with Down syndrome

Study Aim/Purpose:
This study’s primary purpose was to examine the relationship between respite care use and wives’ and husbands’ perception of their marital quality. It also sought to assess wife and husband stress and uplifts (defined as positive experiences) as possible mediating variables of the relationship between respite care and perceived marital quality.

Summary of Methods:
English speaking married couples from the U.S. who had a child with Down syndrome were recruited to participate in a national survey through local and regional organizations and Facebook postings. The final study sample included 224 couples (husband and wife) who completed the survey independently. Information was collected on respondent demographics, use of respite care (broadly defined), perceptions of marital quality, and the frequency and intensity of daily stressors and/or uplifts. Marital quality was assessed using indicators from the Revised Dyadic Adjustment Scale, and the avoidance attachment subscale and anxious attachment subscales of the Revised Experiences in Close Relationships Questionnaire. Frequency and intensity of stressors and uplifts were assessed using the Hassles and Uplifts Scale with respondents rating how much each of 53 items are “a daily hassle” and how much each of the items are “a daily uplift” for them.

Data were analyzed with structural equation modeling. An Actor-Partner Independence Model was used to estimate effects of the amount of respite care on husband and wife relationship quality. The influence of each partner’s stressors and uplifts on her or his spouse was calculated. The indirect paths of daily uplifts and stressors mediating between respite care and marital quality were also calculated.

Summary of Results:
Study respondents who used respite care mostly received respite provided by grandparents, with very little provided by community agencies. Results did not find a statistically significant positive relationship between amount of respite care and marital relationship quality or between respite care and husbands’ and wives’ daily uplifts. At the same time, respite care was negatively related to both wife and husband stress. The study found that for both wives and husbands daily stress significantly mediated the path from hours of respite used to that spouse’s perception of marital quality. At the same time, daily uplifts were positively related with marital quality for both spouses who reported them. Wife uplifts were also positively correlated with husband perceptions of marital quality and the more perceived uplifts the wife reported experiencing the better marital quality both spouses reported.

Limitations of Study:
The authors noted several limitations in the study design, including the fact that most study participants were Caucasian and mainly recruited from local and regional organizations that may provide ongoing support for these families that is not available to many minority populations. They note that self-reporting of what was considered respite care may have also resulted in certain biases. Third, they acknowledge that as a cross sectional study design, inferences cannot be drawn about the causation among the variables that are associated. Because participants were asked to consider each of 36 ARCH National Respite Network and Resource Center the 53 items for the daily Hassles and Uplifts Scale as both a stressor and an uplift, the authors acknowledge that there could be shared variance between the measures.

Additionally, the authors suggest that although the study did not find a correlation between respite care and uplifts, this may be due to characteristics and behaviors of the study population. First, the uplift scores of the study population were already fairly high for both husbands and wives; thus, the number of hours of respite care may not have been sufficient to further increase their scores. Second, the activities the parents performed while their child was receiving respite (e.g. running errand or doing chores) may not have resulted in uplifts.

Authors’ Discussion/Conclusions:
The authors conclude with several policy recommendations supported by their findings including expansion of funding for formal respite care and tax policies that recognize the special expenses and/or loss of income and Social Security benefits for those providing in home care to family members with chronic conditions or disabilities. They also recommend that consideration of respite care services be an integral part of children’s Individual Family Service Plan (IFSP) or Individualized Education Program (IEP) through the schools. They stress that schools may be an important intervention point for community organizations to link trained respite care providers to families in need of respite. Because respite care helps reduce stress, and lower levels of stress increase marital quality, the authors recommend that programming be provided to provide respite care to married families to assist families in reduction of daily stress levels. The authors also highlight the importance of including the perspective of fathers in research on the families raising children with Down syndrome and their needs.

They suggest several implications for future research including identification of the factors that affect respite care access, understanding what activities parents engage in that maximize the benefit of receiving respite care, and studies that specifically identify what family characteristics or resources predict marital quality in families raising children with Down syndrome, which was very high in this study population.