‘Jumping through hoops’: parents' experiences with seeking respite care for children with special needs

Abstract

Respite care may act as a means to reduce stress and fatigue in people caring for a dependent who has a disability. Despite this, a variety of barriers may exist to obtaining such services. This study explored caregivers' experiences seeking respite care for their children with special needs within a province in Canada. Caregivers were recruited from two agencies providing respite care for children with fetal alcohol spectrum disorders and other mental health and developmental difficulties. In total, 10 caregivers participated in in-depth individual interviews. A constructivist grounded theory approach was employed in the design and analysis of the data. Caregivers discussed their frustrations with the process of finding and obtaining respite care, a course of action described as 'jumping through hoops'. This construct was composed of subcategories emphasizing the complexity of 'navigating the system', the bidirectional process of 'meeting the requirements' and the challenges of 'getting help'. The collective experiences of these caregivers point to the need for more flexibility and co-ordination of respite care services for children with special needs.