Unfulfilled expectations: a family perspective on transition to adult life for young people with complex disabilities

Abstract

The concept of a transition phase from childhood to adult life is a well-recognised stage in human development. However, young people with complex disabilities experience this transition differently from other young people. Little is known about what impact these experiences have on the life of the family supporting the young person or the young person themselves. This small qualitative research study explores the recurring issues that affect families of young people with complex disabilities and the young people themselves as they transition to adult life. The study focuses on the family perspective of the transition period. The research draws on descriptive data generated from two focus group interviews. Seven parents of young people with complex disabilities participated in the focus groups. Data was analysed using constant comparative analysis. The overall perspective was social constructivism. Three themes emerged from the data analysis. These include service mismanagement, caretaking tensions and perpetual childhood management. The over-arching concept within which these themes rest is parental loss. Research findings suggest that the transition period for these parents is a highly stressful time, when services and funding are lost, yet the needs of the young people are not decreasing. Parents’ influence is diminished, as society perceives the young person as an autonomous adult, however this is not parental reality as families must continue to care for a young person with the cognitive ability of a child. This research highlights the need for young people with complex disabilities to be recognised as having differing needs from others with less severe disabilities. To address this, policy and funding discrepancies would need to be considered at a governmental level. At a local level, service agency recognition of the ongoing role of parents, and a continuation of the family-centred model of care would assist parents with the daily challenges and losses they experience as their young people transition.