Evaluating Care Integration for Children With Special Health Care Needs v1.0

Study Overview
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Brief Summary
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The Evelina London Children's Hospital (ELCH) is planning to integrate care for children with special health care needs (CSHCN) 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. This study aims to explore the views and experiences of key stakeholders involved with these services, including the parents/caregivers of CSHCN, and professionals/staff team members. These will be explored using semi-structured qualitative interviews.

Detailed Description
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There has been a push at the policy level to implement integrated care approaches in the USA and the UK. However, few integrated care models have been evaluated, particularly for children with special health care needs (CSHCN). This is an important group with high levels of needs, and complex and intensive use of services, and which the research team hypothesize could benefit immensely from care integration. This project aims to qualitatively evaluate care integration implementation for CSHCN, to understand how and why integrated services do (or do not) work to improve integration of care. This research gap was confirmed by a systematic literature review on these topics, conducted by the research team (in final draft stages). 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 themes to be investigated will include: i. To explore the perceptions of key stakeholders on the overall quality of life, wellbeing, and community inclusion of CSHCN and their parents/caregivers. ii. To explore the perceptions of key stakeholders on CSHCN and family satisfaction with care, and care integration, including equity of access and how this is impacted by integration. iii. To explore the views of key stakeholders on the impact of the new key worker/care-coordinator service on the CSHCN and family, including school, work, family, and healthcare use. With the learning from this project, the research team also 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.

Official Title
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Evaluating Care Integration for Children With Special Health Care Needs

Conditions
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Parents, Staff Attitude, Healthy

Intervention / Treatment
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* Other: Care Integration for Children With Special Health Care Needs


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Parents/care givers of CSHCN Staff and professional stakeholders involved (either directly or indirectly) with CSHCN Exclusion Criteria: Participants under the age of 18 years Participants who are unable to speak and understand English

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Parents and Carers<br>Parents and carers of children with special healthcare needs | Other: Care Integration for Children With Special Health Care Needs<br>* The Evelina London Children's Hospital (ELCH) is planning to integrate care for children with special health care needs (CSHCN) 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<br>|
| Staff and professionals<br>Staff and professionals involved (either directly or indirectly in healthcare and other services) with children with special healthcare needs | Other: Care Integration for Children With Special Health Care Needs<br>* The Evelina London Children's Hospital (ELCH) is planning to integrate care for children with special health care needs (CSHCN) 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<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Changes in perceptions of care integration for children with special healthcare needs (CSHCN) identified though qualitative interviews from baseline to follow-up | Exploring views and experiences of participants on how can care be better integrated for children with special healthcare needs (CSHCN), and their families using a 'Topic guide' through a semi-structured qualitative interview. The topic guide was developed based on present available literature on the role of a care coordinator for CSHCN and discussions with families, colleagues from paediatrics clinical team at ELCH, and the community health team for Lambeth and Southwark. | Baseline at the start of the intervention, and follow-up after at least 1 month of the intervention. | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Children with special healthcare needs, CSHCN, Parents, Carer, Professionals, Staff