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

Not yet recruiting

• Conditions: Sickle Cell Disease

• Registration Number: NCT06251843
• Lead Sponsor: King's College London

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.

Detailed Description

Not available

Study Timeline

• Status Verified: 2024-02
• Study First Submitted: 2024-02-01
• Study First Submitted QC: 2024-02-01
• Last Update Submitted: 2024-02-01
• Study First Posted: 2024-02-09
• Last Update Posted: 2024-02-09
• Study Start: 2024-05
• Primary Completion: 2025-02-28
• Study Completion: 2025-02-28

Recruitment & Eligibility

• Status: NOT_YET_RECRUITING
• Sex: All
• Target Recruitment: 30

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

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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.

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Support strategies for families with a child with SCD	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 Outcome Measures

Name	Time	Method
Parental reasons for accessing support	July 2024	Reasons why parents choose to access support or not
Support priorities	Sept 2025	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
Existing support	July 2024	Description of support strategies accessed nationally by parents during the first year following their child's SCD diagnosis