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Published on: September 27, 2020
Care coordination for children with a disability or developmental difficulty: Empowers families and reduces the
Sarah Myers1, Bethan Collins2, Sabine Maguire3
1Department of Paediatrics, Ysbyty Ystrad Fawr, Ystrad Mynach, UK.
Insights
Care coordination (CC) significantly improves experiences for families of children with disability or developmental difficulty (DDD). It enhances parental engagement, streamlines care navigation, and provides holistic support, easing burdens on families and professionals.
Area of Science:
- Pediatric Healthcare
- Disability Services
- Care Management
Background:
- Nearly 50% of children and young people with disability or developmental difficulty (DDD) have complex needs requiring multidisciplinary care.
- Care coordination (CC) aims to centralize contact and services for improved care experiences and family empowerment.
- The impact of CC on children with DDD was evaluated.
Purpose of the Study:
- To evaluate the impact and effectiveness of care coordination (CC) for children with disability or developmental difficulty (DDD).
- To assess improvements in care navigation, parental engagement, and overall support for families.
- To understand the benefits and challenges of CC from both family and professional perspectives.
Main Methods:
- An in-depth evaluation of CC services was conducted in Gwent, South Wales.
- Semi-structured interviews were held with 9 families and 14 health and social care professionals.
- Interview transcripts were analyzed using thematic analysis.
Main Results:
- Families reported improved ability to navigate, organize, and understand care, with increased parental engagement.
- Professionals noted fewer missed appointments and CC as a source of holistic support, including practical and emotional advice.
- CC was perceived to ease pressure on professional services, though limitations included staff capacity and role clarity.
Conclusions:
- Care coordinators are vital for supporting families of children with DDD, especially during times of stress and resource scarcity.
- CC empowers families to engage with health services effectively.
- Care coordination benefits both families and professionals by enhancing support and relationships.
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.
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