Evaluating Care Integration for Children with Special Health Care Needs V1.0

Evaluating Care Integration for Children with Special Health Care Needs

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.

Study Overview

• Status: Recruiting
• Conditions: Healthy; Parents; Staff Attitude
• Intervention / Treatment: Other: Care Integration for Children With Special Health Care Needs

Detailed Description

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.

• Study Type: Observational
• Enrollment (Estimated): 50

Contacts and Locations

• Study Contact: Name: Ingrid Wolfe, PhD; Phone Number: +447740148900; Email: ingrid.wolfe@kcl.ac.uk
• Study Contact Backup: Name: Swapnil Ghotane, PhD; Phone Number: +447407141243; Email: swapnil.ghotane@kcl.ac.uk

Study Locations

• United Kingdom
  • London, United Kingdom
    • Recruiting
    • St Thomas' Hospital
    • Contact: Ingrid Wolfe

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Parents/carers of children with special health care needs (CSHCN) attending/referred to paediatric settings of Evelina London Children's Hospital (ELCH), clinical care team members from the paediatrics settings of ELCH, commissioners from Lambeth and Southwark, community health team involving CSHCN in Lambeth and Southwark, and other key stakeholders from the local NHS trust and other organisations

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Parents and Carers; Parents and carers of children with special healthcare needs	Other: Care Integration for Children With Special Health Care Needs; 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
Staff and professionals; 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; 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

What is the study measuring?

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.

Collaborators and Investigators

• Sponsor: King's College London
• Collaborators: National Institute for Health Research, United Kingdom

Publications and helpful links

General Publications

• Goodwin N. Understanding Integrated Care. Int J Integr Care. 2016 Oct 28;16(4):6. doi: 10.5334/ijic.2530. No abstract available.

Helpful Links

• Report to Congress: National Strategy for Quality Improvement in Health Care. March 2011. Submitted by the U.S. Department of Health and Human Services.
• Integrated Care: Our Shared Commitment. A framework that outlines ways to improve health and social care integration. From: Department of Health & Social Care

Study record dates

Study Major Dates

• Study Start (Actual): November 1, 2023
• Primary Completion (Estimated): January 1, 2026
• Study Completion (Estimated): March 31, 2026

Study Registration Dates

• First Submitted: June 9, 2023
• First Submitted That Met QC Criteria: June 23, 2023
• First Posted (Actual): June 26, 2023

Study Record Updates

• Last Update Posted (Actual): March 25, 2025
• Last Update Submitted That Met QC Criteria: March 12, 2025
• Last Verified: March 1, 2024

More Information

Terms related to this study

• Keywords: Parents; Staff; Carer; Children with special healthcare needs; CSHCN; Professionals
• Other Study ID Numbers: IRAS - 317445

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No