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
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Sickle Cell Disease
- Sponsor
- King's College London
- Enrollment
- 30
- Primary Endpoint
- Support strategies for families with a child with SCD
- Status
- Not yet recruiting
- Last Updated
- 2 years ago
Overview
Brief 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.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Parents whose children have been diagnosed with SCD via screening in the last 36 months
- •Health professionals involved in the care of children with sickle cell disorder
Exclusion Criteria
- •Parents whose inclusion may be contradicted on psychosocial grounds or who are unable to give informed consent.
- •Health professionals who do not have experience of caring for children with sickle cell disorder.
Outcomes
Primary Outcomes
Support strategies for families with a child with SCD
Time Frame: June 2025
Co-design strategies to ensure greater accessibility of support for parents during their child's first year of life following a SCD diagnosis
Secondary Outcomes
- Parental reasons for accessing support(July 2024)
- Support priorities(Sept 2025)
- Existing support(July 2024)