Factors affecting decision-making in children with complex care needs: a consensus approach to develop best practice in a UK children’s hospital

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.