Caring for an intellectually disabled child : the family experience

Abstract

This study explored the experiences of parents who have a child with an Intellectual Disability. It also examined parents’ experiences of the use of respite care. I work in the Intellectual Disability area and this was a motivation for carrying out this research. Another motivating factor is the paucity of research in this area. A qualitative research approach was chosen for this study as the researcher believed this was the best method to learn of the personal and unique experiences of families. A purposeful sampling technique was used and ten parents participated in the study, all of whom have a child with an Intellectual Disability and who avail of respite care services. The sample consisted of nine mothers and one father. A semi-structured interview was conducted with each parent and the data was analysed using thematic analysis. This study found that parents viewed the care of a child with an Intellectual Disability as both demanding and rewarding. The parents experienced stress and felt they were isolated in their caring role. Parents were concerned what the impact of caring for a child with an Intellectual Disability would have on their other siblings, in terms of care and the responsibilities placed on them. On the other hand, parents described the child with the Intellectual Disability as the life and soul of the family that they would not want this to change. Other findings from the study indicated that parents didn’t receive enough respite care for their child and also that the care they received didn’t occur when most needed but it was offered as it became available from the service provider. Another finding from the study was that parents were totally unaware of what actually occurred during the time their child was in respite care. The parents were also unaware of the qualifications of the staff offering this service. The parents also stressed that they were worried about future care needs for their Intellectually Disabled child. However, despite this worry only one parent was actively researching possible future care facilities. This was a small piece of research that highlights the demands on parents of caring for a child with an Intellectual Disability and the shortfalls in respite service delivery. The research points to the need for more collaboration between service providers and service users. It also highlights supports these parents identified as important to them.