Family perceptions of hospitalisation of children with Down's Syndrome

Abstract

The family is usually the primary caregiver, and the extra burden of caring for a disabled child almost always falls on them, even though they have outside jobs. Parents and family members are affected inevitably by a child's admission to hospital, let alone if the child has some type of disability. The aim of this study was to explore the perceptions of Maltese families of children with Down's syndrome about hospitalisation. Perceptions were sought through the lived experiences of each corresponding family. An exploratory qualitative research study was designed and data was collected by means of a semi-structured interview. Three families, each consisting of two parents, a sibling and a Down's syndrome child, agreed to participate voluntary in this study. Findings suggested that families whose disabled child is hospitalised invest a lot in their relationship with health care professionals. Moreover, a more alluring hospital environment helps to alleviate some of the traumatic effects brought about by hospitalisation. Families also reported that during the period of hospitalisation they need support, information and they also need to stay with their child twenty-four hours a day. Furthermore, all the families acknowledged that hospitalisation is stressful but each family developed strategies to overcome stressful situations. A common characteristic within each family was that they all valued the importance of sharing their experiences with someone outside the family. Additionally, families agreed that the normal family routine is altered and that siblings tend to be neglected. It also appears that the future brings about fear in families who have a Down's syndrome child. In view of these findings, several recommendations for further research, education and for practice were put forward.