Transition of young people with pituitary conditions to adult services
Research type
Research Study
Full title
Transition from Paediatric to Adult Services: Experiences of Children and Young People with Pituitary Conditions.
IRAS ID
306473
Contact name
Yolanta Breese
Contact email
Sponsor organisation
University of Plymouth
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 4 months, 0 days
Research summary
Research Summary:
This study will examine the 'lived' experiences of children(and their parents) and young people with pituitary conditions as they undertake the process of transition, from a children's hospital to an adult hospital. The experiences of healthcare professionals, involved in transitional care service provision, will also be obtained.
This study is a three part study and this application is for Part 2, the only part involving the NHS. Part 1 and Part 3 involves a charity only and Part 1 was approved by the University Ethics Committee and Part 3 will be submitted to FREIC following Part 2.
It has been identified that optimal care is not being provided. It is essential that there is continuity of the services during transition to avoid poor outcomes in the longer term and increasing pressure on NHS services. Semi-structured, in-depth, interviews will be undertaken, lasting between 30-60 minutes, to obtain children's and young people's experiences of transitional care. Parents have a key role to play during this time, in addition to healthcare professionals. Stage Three of the study will be working with the Pituitary Foundation and a survey will be used that will be informed by the themes and sub-themes that emerge from the interviews. This study will raise awareness of the issues surrounding transitional care and will consider what the patient's needs are at this time, what the parents/carers'experiences are and what healthcare professionals' attitudes are to transition service provision. This research will also consider why transitional care interventions are not working in clinical practice and why there are still many unresolved issues that need to be addressed. Disseminating the research findings will lead to greater awareness, policy change, proposal of a new model of transitional care and publication. Part 2 will be undertaken, in the NHS, between March 2023 and December 2023.
Summary of Results:
This study examined the 'lived' experiences of young people with pituitary conditions who were in the process of, or had undertaken, transition from a children's hospital to an adult hospital. The experiences of healthcare professionals involved in transition healthcare service provision were also obtained.
Participants were recruited from the NHS and a charitable organisation. A combined total of twelve semi-structured, in-depth interviews were undertaken with young people with pituitary conditions and healthcare professionals.
Findings
Key themes that emerged from the interviews with young people related to their experiences of the transition process to adult services. These experiences included the variation of transitional healthcare services that had been provided at this time, communication issues between young people and healthcare providers (both within and between hospital trusts), education and training in relation to understanding and engaging with young people with pituitary conditions. The requirement for the young person to take on more responsibility for self-management of their condition and move into a more 'pro-active' role once transition had taken place was highlighted. The wider psychosocial aspects of being a young person with a pituitary condition, and the significance of the right support at the time of transition to adult services were also raised.
The key themes that emerged from the interviews with healthcare professionals related to their overall experiences of transitional healthcare service provision, and what they saw the issues were for young people when undertaking the process of transition to adult services.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
23/YH/0064
Date of REC Opinion
19 Apr 2023
REC opinion
Further Information Favourable Opinion