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Factors affecting decision-making in children with complex care needs: a consensus approach to develop best practice
Giles Birchley1, Sadie Thomas-Unsworth2, Charlotte Mellor3
1Population Health Sciences, University of Bristol Medical School, Bristol, UK giles.birchley@bristol.ac.uk.
Insights
Developing standardized best practices for managing complex pediatric care needs can improve collaboration between healthcare teams and families. This consensus approach aims to reduce friction and enhance care coordination for children with complex conditions.
Area of Science:
- Pediatric Healthcare
- Complex Care Management
- Healthcare Professional Collaboration
Background:
- Children with complex care needs represent a growing patient group in UK healthcare.
- Managing these children requires significant coordination among multiple healthcare teams, often straining parents and professionals.
- Current care delivery faces logistical and material challenges, leading to friction between families and providers.
Purpose of the Study:
- To establish a consensus-driven approach for managing complexity in pediatric healthcare.
- To develop standardized best practices for healthcare professionals caring for children with complex needs.
Main Methods:
- A modified Delphi process was employed.
- Clinical leaders initially developed candidate statements.
- Two survey rounds were conducted with professionals in a UK children's hospital to reach consensus.
Main Results:
- Ninety-nine professionals completed both survey rounds, agreeing on 69 statements.
- Consensus was reached across seven key areas: family communication, interprofessional communication, shared decision-making, multidisciplinary team roles, conflict management, clinical psychology, and staff support.
- A high level of consensus was observed for all statements.
Conclusions:
- The agreed statements offer a foundation for standardized management of complexity in pediatric care.
- Implementing these consensus-based approaches has the potential to reduce friction among parents, children, and healthcare professionals.
- Standardized practices can improve the experience and outcomes for children with complex care needs.
Background:
Children with complex care needs are a growing proportion of the sick children seen in all healthcare settings in the UK. Complex care needs place demands on parents and professionals who often require many different healthcare teams to work together. Care can be both materially and logistically difficult to manage, causing friction with parents. These difficulties may be reduced if common best practice standards and approaches can be developed in this area.
Objective:
To develop a consensus approach to the management of complexity among healthcare professionals, we used a modified Delphi process. The process consisted of a meeting of clinical leaders to develop candidate statements, followed by two survey rounds open to all professionals in a UK children's hospital to measure and establish consensus recommendations.
Results:
Ninety-nine professionals completed both rounds of the survey, 69 statements were agreed. These pertained to seven thematic areas: standardised approaches to communicating with families; processes for interprofessional communication; processes for shared decision-making in the child's best interests; role of the multidisciplinary team; managing professional-parental disagreement and conflict; the role of clinical psychologists; and staff support. Overall, the level of consensus was high, ranging from agreement to strong agreement.
Conclusions:
These statements provide a consensus basis that can inform standardised approaches to the management of complexity. Such approaches may decrease friction between parents, children and healthcare professionals.
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