Support Strategies for Parents During the First Year Following Their Child's Diagnosis of Sickle Cell Disorder

Sickle Cell Disease Clinical Trial

Official 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

Clinical Trial Details — Status: Not yet recruiting

Administrative data

• NCT number: NCT06251843
• Other study ID #: Support_SCD
• Status: Not yet recruiting
• Start date: May 2024
• Est. completion date: February 28, 2025

Study information

• Verified date: February 2024
• Source: King's College London
• Contact: Jane Chudleigh, PhD
• Phone: 02078485590
• Email: jane.2.chudleigh[@]kcl.ac.uk
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

Recruitment information / eligibility

• Status: Not yet recruiting
• Enrollment: 30
• Est. completion date: February 28, 2025
• Est. primary completion date: February 28, 2025
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years to 99 Years

Eligibility

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.

Related Conditions & MeSH terms

• Anemia, Sickle Cell
• Sickle Cell Disease

Locations

Country	Name	City	State
n/a

Sponsors (5)

Lead Sponsor	Collaborator
King's College London	British Academy, Guy's and St Thomas' NHS Foundation Trust, King's College Hospital NHS Trust, Sickle Cell Society

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Support strategies for families with a child with SCD	Co-design strategies to ensure greater accessibility of support for parents during their child's first year of life following a SCD diagnosis	June 2025
Secondary	Existing support	Description of support strategies accessed nationally by parents during the first year following their child's SCD diagnosis	July 2024
Secondary	Parental reasons for accessing support	Reasons why parents choose to access support or not	July 2024
Secondary	Support priorities	priorities for improving accessibility to support for parents during their child's first year of life following a SCD diagnosis for the co-design groups	Sept 2025