Respite care users who have children with chronic conditions: are they getting a break?

Caregiving for children with chronic illness and disabilities by family caregivers at home is widely recognized as an optimal choice for the child and family. To promote and maintain the health of the child, primary caregiver, and entire family, respite care has been established as an important caregiving resource. The purpose of this study was to describe primary caregivers' respite service use, perceptions of actual respite, and barriers to respite and respite care. A descriptive design with written survey methods and convenience sampling techniques was used. We found that, despite accessing a variety of respite services, the participants perceived limited actual respite from caregiving. Increased preparation of respite care providers and revision of available services may be means for achieving respite for primary caregivers and their families.