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

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ClinicalTrials.gov Identifier: NCT05919589
Recruitment Status : Recruiting
First Posted : June 26, 2023
Last Update Posted : February 2, 2024
Sponsor:
Collaborator:
National Institute for Health Research, United Kingdom
Information provided by (Responsible Party):
King's College London

Study Description
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Brief Summary:

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.


Condition or disease Intervention/treatment
Parents Staff Attitude Healthy 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 Design
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Study Type : Observational
Estimated Enrollment : 50 participants
Observational Model: Other
Time Perspective: Other
Official Title: Evaluating Care Integration for Children With Special Health Care Needs
Actual Study Start Date : November 1, 2023
Estimated Primary Completion Date : July 1, 2024
Estimated Study Completion Date : September 30, 2024
Groups and Cohorts
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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


Outcome Measures
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Primary Outcome Measures :
  1. Changes in perceptions of care integration for children with special healthcare needs (CSHCN) identified though qualitative interviews from baseline to follow-up [ Time Frame: Baseline at the start of the intervention, and follow-up after at least 1 month of the intervention. ]
    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.


Eligibility Criteria
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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
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
Criteria

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
Contacts and Locations
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Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT05919589


Contacts
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Contact: Ingrid Wolfe, PhD +447740148900 ingrid.wolfe@kcl.ac.uk
Contact: Swapnil Ghotane, PhD +447407141243 swapnil.ghotane@kcl.ac.uk

Locations
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United Kingdom
St Thomas' Hospital Recruiting
London, United Kingdom
Contact: Ingrid Wolfe         
Sponsors and Collaborators
King's College London
National Institute for Health Research, United Kingdom
More Information
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Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information
Additional Information:

Publications:

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Responsible Party: King's College London
ClinicalTrials.gov Identifier: NCT05919589    
Other Study ID Numbers: IRAS - 317445
First Posted: June 26, 2023    Key Record Dates
Last Update Posted: February 2, 2024
Last Verified: February 2024
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by King's College London:
Children with special healthcare needs
CSHCN
Parents
 Carer
Professionals
Staff