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| Name | Class |
|---|---|
| British Academy | UNKNOWN |
| Sickle Cell Society | UNKNOWN |
| King's College Hospital NHS Trust | OTHER |
| Guy's and St Thomas' NHS Foundation Trust |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 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 |
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Existing support | 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 |
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Inclusion Criteria:
Exclusion Criteria:
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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
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jane Chudleigh, PhD | Contact | 02078485590 | jane.2.chudleigh@kcl.ac.uk |
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| ID | Term |
|---|---|
| D000755 | Anemia, Sickle Cell |
| ID | Term |
|---|---|
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006402 | Hematologic Diseases |
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| OTHER |
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Reasons why parents choose to access support or not
| July 2024 |
| Support priorities | 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 |
| D006425 |
| Hemic and Lymphatic Diseases |
| D006453 | Hemoglobinopathies |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |