Article Text
Abstract
Background There are increasing numbers of young people (YP) with life limiting diagnoses living into adulthood. When these YP become too old for children’s hospice services there is a recognised gap in their care and they often experience challenges when transitioning into adult services. A two year pilot project was developed between a hospice’s adult and children’s services to try to address this gap and aid transitioning. The pilot involved a day service two Saturdays per month with occasional overnight trips, with two separate groups depending on the YP’s ability to communicate.
Aim To evaluate the pilot project.
Method Three focus groups made up of key stakeholders in the service (YP, their parents and staff) were performed and analysed using an adopted thematic analysis framework.
Results Three YP, seven parents and six staff members participated. Five main themes across the three groups were identified;
Transition is Tough
Continuity
Parental Care
The pilot service helps
The Future
Participants described the transition period as a difficult time for both the YP and their families, with a perceived lack of adult services available for them. All groups agreed that the pilot project had a positive impact on the YP and their families, with the social benefits highlighted as a key factor. All participants were keen for the project to continue, ideally on a more frequent basis with more overnight stays, and the parents were keen to be more involved in the running of the service.
Conclusion The key stakeholders in this service were all positive regarding the impact the service has had on the YP and their families, and were keen to see it continue. This pilot models a service that could be adopted by other organisations.