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

King's College London

Status

Not yet enrolling

Conditions

Sickle Cell Disease

Study type

Observational

Funder types

Other

Identifiers

NCT06251843

Support_SCD

Details and patient eligibility

About

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.

Enrollment

30 estimated patients

Sex

All

Ages

18 to 99 years old

Volunteers

Accepts Healthy Volunteers

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.