Transitions in the lives of young people with complex healthcare needs

BACKGROUND: The disabled child population now incorporates a group of children and young people with complex healthcare needs, many of whom are supported by medical devices and technologies. Little is known about their experiences and perspectives, particularly in relation to transitions. METHODS: Twenty-eight young people aged between 8 and 19 years old were recruited via Community Children's Nursing Teams. Data were collected by in-depth qualitative interviews and analysed using Grounded Theory principles and procedures. RESULTS: Young people with complex healthcare needs experience multiple and often concurrent transitions in their lives. As well as moving from childhood to adulthood, they experience different organizational and illness transitions. This paper focuses on their experiences of moving from children to adult services and moving from parental care to self-care. Moving to adult services was characterized as a time of uncertainty because of lack of information and involvement in transition planning. Concerns were expressed about the continuity of support packages into adult services and whether specialist expertise would be available. Young people in adult services described how they had needed to adjust to a different culture and way of working and the loss of relationships with familiar, trusted professionals. In addition to becoming socially independent, young people were in the process of acquiring control over their healthcare and support needs. The acquisition of responsibility for managing therapies and devices was described as an evolving, individually negotiated process. However, responsibility for decision-making and liasing with services could be acquired suddenly on transfer to adult services and not as part of an integrated self-care transition process. CONCLUSIONS: Transition is often too focused on service transition and transfer rather than conceptualizing it holistically as part of the process of moving to adulthood and independence. Young people with complex healthcare needs may have support needs that are unfamiliar for adult services at present. Multi-agency personalized planning that involves parents and young people is essential to ensure continuity of support and integration with other life transitions.