Let's Talk Transition (Version 1.0)
Research type
Research Study
Full title
Let’s talk transition: Exploring caregivers’ experience of transitioning responsibility for treatment adherence to young people engaged in prophylaxis therapy.
IRAS ID
276556
Contact name
Rachel Snodgrass
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
1 years, 3 months, 20 days
Research summary
Research Summary
A significant decline in treatment adherence is observed within many chronic illness populations across the transition to adulthood. Young people are expected to move from parental control of healthcare needs and assume a greater degree of independence over treatment. However, this developmental transition cannot be conceptualised as a young person-only phenomenon. Caregivers are required to adjust their role, gradually relinquish management and support autonomy. Existing research suggests caregivers of young people with long-term conditions, face a range of new challenges associated with their own development as well as that of the young person. Previous studies examining carers’ perceptions of transition have focused on childhood conditions such as type 1 diabetes and cystic fibrosis; treatment transition of caregivers of young people living with haemophilia has yet to be explored. In the current study, participants will be primary caregivers of young people with a diagnosis of haemophilia, from 14-24 years old. A primary caregiver will be someone who has held a lead role in supporting adherence to date and is involved in the transition of treatment responsibility. Caregivers of those who commenced regular (prophylactic) treatment prior to aged 8 years will be invited to participate. This aims to capture experiences across key developmental stages : aged 11 years through secondary school; aged 16 years through sixth from and aged 18 years through to early adulthood and NHS adult services.
Semi-structured, interviews will be conducted with primary caregivers. Flexibility will also be employed for caregivers to ensure interviews are scheduled for the most convenient time. Questions will be designed to elicit caregivers’ experience of treatment transition, how they perceive their role in relation to facilitators and barriers of transition. Discussion will last between 40 and 60 minutes.
Interviews would now be conducted in line with appropriate government guidance for COVID-19.Summary of Results
This study explored the transitioning of responsibility for treatment, from caregivers to young people who use prophylaxis for haemophilia. At present, little is known about caregivers experience of this transition process for the haemophilia population. The current study obtained a caregiver perspective on transition and aimed to identify barriers and facilitators to the process of transition.
Four caregivers (all female) were recruited from a regional haemophilia clinic. These individuals were caregivers of young people with a diagnosis of haemophilia, aged between 14-24 years old. Caregivers took part in a semi-structured interview that lasted between 60-115 minutes.
The study found a range of barriers and facilitators to the process of treatment transition from caregivers to young people. Barriers included ‘Emotion’ and ‘Role/Identity’. However, certain facilitators such as ‘Knowledge’, ‘Skills’ and ‘Reinforcement’ were found to be important in shaping new roles and responsibilities between young people and their caregivers.
The current study provides insight into the transition process from a caregiver perspective, highlighting experienced barriers and facilitators to this key change in healthcare responsibility. Moving forward, these findings can be used by specialist haemophilia services to inform clinical interventions targeting transition readiness and addressing challenges experienced by caregivers.REC name
London - Central Research Ethics Committee
REC reference
20/LO/0819
Date of REC Opinion
8 Jun 2020
REC opinion
Favourable Opinion