The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study

Study Aim/Purpose: The purpose of this study was to examine the benefits of inpatient respite services for children with developmental disabilities and their parents. 

Summary of Methods: The study used a quasi-experimental pre-post design comparing survey responses for families who applied for and received 3-7 day inpatient services at a center for developmental disabilities in the Midwestern United States to those who applied for and received 30-day inpatient treatment at the same center and received medical, nursing, physical therapy, speech therapy, occupational therapy, recreational therapy, social work, psychology services, and family education as needed. Analyses of group differences across key demographic and illness variables found no significant differences other than length of stay. The 80 participants included in the data analysis each completed a questionnaire at three time points: admission, discharge, and 6 months after discharge. These surveys collected information on two outcomes: parents’ psychological distress (measured using the Brief Symptom Inventory) and parenting stress (measured using Parenting Stress Index). Additionally, therapy and nursing staff at the center rated the functional ability of the child at admission and discharge (using the Functional Ability Scale by Aniol and Mullions). 

Summary of Key Results: Analyses indicate three important findings: 1) psychological distress was significantly lower at discharge and 6-month follow-up for the respite group and equal to that of the comparison group; 2) parenting stress was significantly lower at discharge, but at 6-month follow-up had returned to admission levels for both groups; and 3) both groups of children demonstrated improved functional ability from admission to discharge. 

Study Limitations (as cited by authors): The authors note the lack of a control group as a limitation of the study design. They also point out that their data sources did not allow for measurement of mediating or indirect factors that could have contributed to the lowering of parent distress during the respite stay and after discharge. They also noted that the information collected on parent distress was limited in that it relied “solely on self-report measures of distress rather than structured interviews or observational assessments of parent-child interactions.” 

Authors’ Discussion/Conclusions: “Taken together the results on parental outcomes suggest that brief inpatient respite care admission may well serve to diminish the more general distress that parents feel on a day to day basis and have positive benefits for the children as well.” The authors recommend that future research address the limitations of their study design and allow for documenting the differential effectiveness of respite with specific subgroups of children and families. They also expressed the need for research to assess the effect of respite services on the likelihood of maltreatment of abandonment, and the impacts of respite on overutilization of other health care services and long-term out-of-home placements.