Care coordination for children with a disability or developmental difficulty: Empowers families and reduces the burden on staff supporting them

Myers, Sarah, Collins, Bethan and Maguire, Sabine 2024. Care coordination for children with a disability or developmental difficulty: Empowers families and reduces the burden on staff supporting them. Child: Care, Health and Development 50 (1) , e13158. 10.1111/cch.13158

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Abstract

Background: Almost half of all children and young people with a disability or developmental difficulty (DDD) have complex disability and are likely to require multidisciplinary care. Care coordination (CC) aims to provide a single point of contact and a coordinated service, thereby improving care experiences, meeting unmet needs and empowering families. The impact of CC for children with DDD was evaluated. Method: Between May and August 2020, an in‐depth evaluation of CC in Gwent, South Wales was conducted. Of 284 families who accessed CC, 38 were approached, as well as 177 health and social care professionals based at Serennu, Nevill Hall and Caerphilly Children's Centres. Nine families and 14 professionals completed semi‐structured interviews. Interview transcripts were analysed using thematic analysis. Results: This evaluation found perceived improvements in families' abilities to navigate, organize and understand care and increased parental engagement. Professionals observed fewer missed appointments, and both professionals and families described CC as a source of holistic support, including practical advice regarding housing, finances and emotional support. Professionals commented on CC easing pressure on their service. Potential limitations included restricted staff capacity and the role not being defined clearly for families and professionals. Conclusions: At a time of increased stress for families of children with DDD, and scarce resources to support them, care coordinators play a vital role in assisting families to engage with health services, while feeling supported and empowered. CC reduces the burden on professionals, while enhancing relationships with families.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: http://creativecommons.org/licenses/by-nc-nd/4.0/
Publisher:	Wiley
ISSN:	0305-1862
Date of First Compliant Deposit:	16 August 2023
Date of Acceptance:	29 June 2023
Last Modified:	20 Feb 2024 14:12
URI:	https://orca.cardiff.ac.uk/id/eprint/161830

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