Objectives Transition to adult services is recognised as a challenging time for young people (YP) with chronic conditions, associated with loss to follow up and poor health outcomes. Although evidence suggests young people with sickle cell disease (YPSCD) feel unsupported during transition, many studies highlighted lack of engagement. We organised an engagement event for children, YPSCD and their families with these objectives:
Educate YPSCD on their health in preparation towards adulthood.
Equip YPSCD with self-efficacy and self-advocacy skills.
Understand the challenges of living with sickle cell disease (SCD).
A pilot regional engagement event was held for children, YPSCD and their families in a non-clinical setting, a premier league football club, fundraised by three NHS trusts.
It was advertised as a fun, festival-like event with a range of activities including a DJ, celebrity appearance, street dance, rap performance, choir, and outdoor games.
Social and health education was delivered by skilled professionals through workshops, stalls, and sessions on transition, breathwork, confidence building, career advice, citizen’s advice, treatment and research, dental health, complementary therapies, and inspirational stories from SC warriors.
Attendees collected stamps in momento booklets on health education interactions.
Thematic analysis was performed on qualitative data collected on event feedback, transition-related concerns, and experience of living with SCD.
Results 212 sickle cell warriors (59% 11–18 y/o) registered to attend with 800 of their friends and families. 123 adults and 153 CYP cared for by 11 NHS trusts attended.
We collected 64 event feedback data. 9% of responders mentioned gaining knowledge about transition.
Two transition workshops were attended by 60 people (23 carers, 26 YP and 11 health professionals). Primarily carers voiced concerns around transition which garnered discussions on themes below:
Adult acute hospital care
Access and support from primary care
YP’s efficacy in managing their health
YP’s ability to advocate for their health
Data on experience of living with SCD was collected from 46 CYP [21 (11–15 y/o) and 8 (16 -18 y/o)] and 47 carers [12 (carers of 12 -15 y/o) and 6 (carers of 16 -18 y/o)].
YP and carers across the age groups had similar worries:
Missed educational opportunities
Disease impact on future career
Well-being and social health
Helpful interventions suggested
Improved education and awareness
Improved hospital experience
Access to a supportive community
Advancement in research
YPSCD are interested in educational health events in a non-clinical setting.
Engagement events are a platform for equipping YPSCD with skills required to transition to adult care.
YPSCD and their carers have similar worries about their chronic health condition.
Transition-specific workshops provide an opportunity for discussing issues and strategies to overcome them.
Workshops designed for YPSCD without their carers may be helpful to encourage participation and address their concerns.
Generic, disease-specific transition workshops can complement individual transition work provided by local healthcare teams.
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