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

Support strategies for families with a child with SCD

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.