Multiple and Multi-dimensional Transitions in the context of life-limiting health conditions: Perspectives of Young Adult, Families and Professionals

Introduction: The needs of young adults with life-limiting conditions are different from younger children and adults in the context of their physical and psychological development (ACT, 2007), as they experience multiple transitions related to their clinical trajectory as well as those from adolescence to adulthood, educational transitions, change in identity, and change in the nature and type of relationships with significant others (Jindal-Snape, 2016). Although there is evidence in literature that the process of transition from child to adult services leads to a deterioration in health of young adults with gaps in health care, a recent Cochrane Review found limited evidence of the effectiveness of the transition interventions that were used. Our own review highlighted the need for further research where the unique life transitions and experiences of young adults with life-limiting conditions are prioritised, alongside the transitions of significant others.

Objectives:
1. To understand the impact of clinical problems and health care experience on the young adults and their educational and life transitions, including their aspirations and unique destinations.
2. To understand the impact of the young adult’s life transitions and choices on significant others (namely families, professionals) and vice versa.


Methodology: The study adopted a mixed methods approach, using methodological and source triangulation. Data were collected through interviews and case notes reviews. It was carried out over a 6 month period and involved serial data, gathered over 3 time points, each approximately 2 months apart.

Findings: The clinical conditions had an impact on other aspects of their lives such as aspirations and plans for the future. Some of their aspirations and choices were seen to be unsafe or unrealistic by the families and professionals. On the whole there was an uncertainty about the future and limited planning as parents and professionals had not expected some to survive beyond childhood. There seemed to be a significant impact of the young adult’s life transitions and choices on their families and professionals.  Implications for policy and practice will be discussed.