Research: “We were just abandoned…” Transition from child to adult services: Exploring the transition experiences of parents of young people with life limiting conditions not expected to live into adulthood
2016/23 - Simon Hardcastle
There has been a growth in medical treatments and life sustaining technology such as long term ventilation, which has seen an increase in the number of young people, not expected to live into adulthood, now require the transition from children’s services to adult health and social care (Beresford, 2004, Doug et al, 2011 and Kirk and Fraser, 2013).
Research has highlighted that transition into adult services for this growing number of young people is increasingly challenging (Thornes, 2001). There is however limited research into the experiences faced by parents during this period of change and uncertainty. This research therefore seeks to explore the experiences of parents and carers of young people not expected to live in into adulthood, as they have managed the transition process.
The study is an exploratory study designed to gain an understanding of parent’s lived experiences of transition from children’s to adult service using interpretive phenomenological analysis. Data collected from four participants during semi-structured, face to face interviews, was recorded, transcribed verbatim and analysed.
Current guidance on transition by a national charity for children and young people with life limiting conditions called “Together for Short Lives” identifies three phases of transition, Phase 1: Preparing for Adulthood; Phase 2: Preparing for moving on and Phase 3: Settling into adulthood services (Together for Short Lives, 2015).
During the analysis of the transcripts ten themes emerged, it was evident that these themes could be linked to the phases in the guidance (Table 1). These main themes with their sub-themes were used as the headings for the results and consequent discussion sections of the dissertation.
Preparing for adulthood
Preparing for moving on
- Role of the GP
- Key Worker / Coordinator
Settling into adult services
- Packages of Care
Impact on parents and young people
- Decision Making
- Current health of young person
How could things have been done differently?
The findings show that the transition from children’s services to adult services for young people with life limiting illnesses remains problematic; with some parents feeling abandoned at a time when they needed support the most.