Adapt carer program for CYP with complex neurodisability in COVID-19 [COVID-19]
Research type
Research Study
Full title
Adapting and co-developing a community based, caregiver support program to meet the needs and priorities of parents/carers of children and young people (CYP) with complex neurodisability, using cerebral palsy as the exemplar case study, during the COVID-19 pandemic and beyond.
IRAS ID
281731
Contact name
Michelle Heys
Contact email
Sponsor organisation
East London NHS Foundation Trust
Duration of Study in the UK
1 years, 4 months, 15 days
Research summary
Prior to COVID-19, families of children and young people (CYP) with a neurodisability in our clinical setting reported a lack of information on current and future health and education needs, as well as a desire to engage with other families in similar circumstances. Yet there is limited evidence on how to meet the psychological and emotional needs of CYP with neurodisability and those of their parents/carers. Peer-led, community-based support programmes, such as Getting to Know Cerebral Palsy (G2KCP) programme may offer a solution. Variants of this programme have been evaluated in Bangladesh, Uganda and Ghana. However the feasibility and adaptability of such programmes have yet to be tested in high-income countries (HIC) such as the UK.
This study will assess the feasibility and adaptability of the G2KCP with parents/carers in Newham. We will co-develop the content for a prototype intervention for use with families in the UK. Given the unprecedented pressures on CYP with CP and their families during the COVID-19 pandemic, we assess families’ needs and experiences at different stages of the pandemic to ensure the intervention is responsive to these emerging priorities.
Study participants will include healthcare professionals and parents/carers who support CYP with complex neurodisabilities, such as cerebral palsy. Parent/carers will be recruited through local networks/forums and patient registers of acute and community clinical services in Newham.
The study will last 21 months. We will first explore the acceptability, feasibility and adaptability G2KCP with parents/carers and health professionals via a series of focus groups discussions and semi-structured interviews. We will then hold a joint workshop to co-develop the final programme content and a programme logic model. Concurrently we will explore parents/carers experiences and perspectives during COVID-19 pandemic/lockdown via quarterly rounds of semi-structured interviews.
Our research will be conducted in face-to-face settings (COVID secure) or via remote methods.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
20/YH/0311
Date of REC Opinion
3 Dec 2020
REC opinion
Further Information Favourable Opinion