Evaluating care integration for children with special healthcare needs
Research type
Research Study
Full title
Evaluating Care Integration for Children With Special Health Care Needs
IRAS ID
317445
Contact name
Ingrid Wolfe
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
Clinicaltrials.gov Identifier
ClinicalTrial.gov , NCT05919589
Duration of Study in the UK
1 years, 1 months, 30 days
Research summary
In the last five decades, the prevalence of children with special health care needs (CSHCN), including those with complex chronic conditions or medical complexity, has been increasing. This important group has high levels of needs, however; the quality of healthcare delivered is sometimes poor, and it is rarely integrated.
Most studies in the current literature are based on children with specific medical conditions, or extremely medically fragile children, and these usually focus on medical needs. There is a lack of evidence on integrated care for CSHCN, particularly regarding support for the wider determinants of health and well-being. This was confirmed by a systematic literature review conducted by the research team. The research team also facilitated workshops with local families of CSHCN and professionals to understand their experiences of care delivery, current concerns, and what should be improved.
Synthesizing information from both the systematic literature review and the workshops led to the development of this research project, which will investigate how care can be better integrated for CSHCN and their families.
The Evelina London Children’s Hospital (ELCH) is planning to integrate care for young children (with a focus on those under 2 years old) using a package of support, including 1) family support workers to manage care coordination and support parents, and 2) ‘navigation’ packs outlining key services, for both the services users and providers.
Over approximately one year, the research team will interview families and professionals involved in these services at ELCH, to understand how and why they do (or don’t) work to improve integration of care. With this understanding, we aim to develop a model of care that can be evaluated at a larger scale in a later study and, if shown to be successful, delivered throughout the NHS and internationally.
Funder: National Institute for Health and Care Research.
REC name
South East Scotland REC 02
REC reference
23/SS/0086
Date of REC Opinion
19 Sep 2023
REC opinion
Further Information Favourable Opinion