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

NCT06251843 | Not Yet Recruiting DMC

• 1 other identifier: Support_SCD
• Study Type: observational
• Target: 30
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Sickle Cell Disease

Keywords

sickle cell disease, SCD, sickle cell anaemia

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (3)

• Existing support

  July 2024

• Parental reasons for accessing support

  July 2024

• Support priorities

  Sept 2025

Study Arms (2)

Parents of children with sickle cell disorder

Parents whose child has been diagnosed with sickle cell disorder in the last 36 months

Health professionals

Health professionals involved in the care of children sickle cell disorder

Eligibility Criteria

• Age: 18 Years - 99 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

• 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

You may not qualify if:

• Health professionals who do not have experience of caring for children with sickle cell disorder.

Sponsors & Collaborators

• King's College London: lead
• British Academy: collaborator
• Sickle Cell Society: collaborator
• King's College Hospital NHS Trust: collaborator
• Guy's and St Thomas' NHS Foundation Trust: collaborator

MeSH Terms

Conditions

Anemia, Sickle Cell

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Central Study Contacts

Jane Chudleigh, PhD

CONTACT

02078485590; jane.2.chudleigh@kcl.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 1, 2024
• First Posted: February 9, 2024
• Study Start: May 1, 2024
• Primary Completion: February 28, 2025
• Study Completion: February 28, 2025
• Last Updated: February 9, 2024

Record last verified: 2024-02