A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

Author(s): Remedios, C., Willenberg, L., Zordan, R., Murphy, A., Hessel, G. and Philip, J. (2015)

Published In: Palliative Medicine, 29 (3): 223-230

Study Aim/Purpose:
This study sought to measure the association between planned, overnight out-of-home hospice respite stays on parental caregivers fatigue level, psychological adjustment, quality of life, and relationship satisfaction.

Summary of Methods:
This study surveyed parental caregivers whose children spent an average of four days in Very Special Kids (VSK), out-of-home overnight hospice setting for children in Melbourne, Australia. Data were collected by mail survey two weeks prior to admission and then approximately one week after discharge. 58 caregivers completed valid baseline surveys and 39 completed valid post-respite surveys. The pre-respite survey contained sociodemographic questions, standardized measures on quality of life (using the SF-12 Health Survey), psychological adjustment (using the General Health Questionnaire), fatigue (using the Chalder Fatigue Scale), relationship quality (Using the Quality of Marriage Index), and social support (using the Multidimensional Scale of Perceived Social Support), and open-ended questions regarding perceptions of caring, major life events, financial stability and reasons for requiring respite. The post-respite survey contained the same close-ended questions and open-ended questions about perceptions of respite and other palliative care services of VSK. Descriptive statistics were used to describe the study population, paired t-tests were used to examine pre/post differences on the key study outcomes, and the qualitative responses were analyzed using content analysis.

Summary of Results:
At baseline, on average, scores on the general health scale showed clinical levels of distress; scores on the fatigue scale showed moderate levels of fatigue; and caregivers reported having a good quality of relationship with their partner. Qualitatively, aside from care provision, their own physical and mental health problems were the most commonly cited major life issues for caregivers. Caregivers’ comments also demonstrated that financial pressures were significant stressors in their lives. Analysis of pre and post-respite responses found significant improvements in caregivers’ reported psychological adjustment, fatigue and mental health quality of life soon after respite use. No significant improvements were found in caregivers’ reported physical health, quality of life, or partner relationships (though the latter had little room for improvement based on baseline reports).

Study Limitations (as cited by authors):
The authors cite the small sample size, low response rate post-respite and lack of a control arm as the study’s key limitations.

Authors’ Discussion/Conclusions:
The authors point to their results to support overnight respite care as an integral and accessible part of support for families of children with life threatening conditions. They also highlight the need for future research to identify additional pediatric palliative care interventions that can reduce the high levels of stress and burden among this population of caregivers.