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

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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT06251843

Enrollment

Registered

2024-02-09

Start date

2024-06-28

Completion date

2025-07-31

Last updated

2026-08-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Sickle Cell Disease

Keywords

sickle cell disease, SCD, sickle cell anaemia

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.

Interventions

None listed

Study design

Observational model

OTHER

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to 99 Years

Healthy volunteers

Yes

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.

Design outcomes

Primary

Measure	Time frame	Description
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

Measure	Time frame	Description
Existing support	July 2024	Description of support strategies accessed nationally by parents during the first year following their child's SCD diagnosis
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

Countries

United Kingdom

Outcome results