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

February 1, 2024 updated by: King's College London

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

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.

Study Overview

Status

Not yet recruiting

Conditions

Study Type

Observational

Enrollment (Estimated)

30

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

Yes

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

Description

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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
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

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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
June 2025

Secondary Outcome Measures

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

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

King's College London

Collaborators

King's College Hospital NHS Trust
Guy's and St Thomas' NHS Foundation Trust
British Academy
Sickle Cell Society

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

May 1, 2024

Primary Completion (Estimated)

February 28, 2025

Study Completion (Estimated)

February 28, 2025

Study Registration Dates

First Submitted

February 1, 2024

First Submitted That Met QC Criteria

February 1, 2024

First Posted (Estimated)

February 9, 2024

Study Record Updates

Last Update Posted (Estimated)

February 9, 2024

Last Update Submitted That Met QC Criteria

February 1, 2024

Last Verified

February 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • Support_SCD

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

UNDECIDED

IPD Plan Description

To be decided

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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