Supporting parents following their child's sickle cell diagnosis
Research type
Research Study
Full title
Co-designing support strategies for parents to encourage early engagement with health services during the first year following their child’s diagnosis of sickle cell disorder
IRAS ID
340387
Contact name
Jane Chudleigh
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
Clinicaltrials.gov Identifier
ClinicalTrials.gov, NCT06251843
Duration of Study in the UK
0 years, 9 months, 30 days
Research summary
Background: Sickle cell disorder (SCD), the commonest genetic (faulty gene inherited from both parents) condition in the UK, affects mainly underserved groups. Babies with SCD must start treatments soon after birth to prevent them becoming unwell. Stigma, fear and inequalities can make it difficult for parents to accept their child’s diagnosis and access appropriate treatment and support.
Aim: Develop strategies to improve support for parents during their child’s first year of life following a SCD diagnosis to encourage early engagement with health services.
Method: Comprises two stages: (i) Determine why parents choose to engage with support or not (ii) Use this information to co-design strategies to ensure greater accessibility of support for parents during their child’s first year of life.
Patient and Public Involvement: We are working with Sickle Cell Society and parents of children with SCD.
Dissemination: Findings will be shared with support groups, charities, health professionals and academics.REC name
London - City & East Research Ethics Committee
REC reference
24/PR/0663
Date of REC Opinion
13 Jun 2024
REC opinion
Further Information Favourable Opinion