Assessment of current practices and development of recommendations to strengthen participation and shared decision-making in paediatric routine care (PedSDM)
Project period: 2023–2027
Background
Involving children with chronic conditions and their parents in healthcare can help align services more closely with families’ needs and improve the quality of care. Shared decision-making and participation in healthcare are recognised as important dimensions of care quality and reflect the principles of the United Nations Convention on the Rights of the Child. They may also increase families’ knowledge and reduce decisional conflict. Despite these potential benefits, the involvement of children and their families in care and decision-making remains limited. Barriers at the individual and organisational levels may hinder the integration of shared decision-making and participation into routine care. However, Germany currently lacks a comprehensive assessment of current practices, families’ preferences, setting-specific barriers across different healthcare settings (e.g. paediatric departments, social paediatric centres), and approaches to strengthening shared decision-making and family participation.
Objectives
Paediatric Shared Decision Making (PedSDM) is the first study to comprehensively assess shared decision-making and family participation in healthcare in Germany and to develop specific recommendations for strengthening both.
Study design and methods
Using a mixed-methods approach, the project consortium will:
- systematically review the evidence on shared decision-making and family participation in healthcare
- examine experiences, preferences, barriers and facilitators from the perspectives of children with chronic conditions, their parents and healthcare professionals
- develop practice-oriented recommendations for strengthening shared decision-making and family participation in routine paediatric care based on the empirical findings.
The collaborative research project is coordinated by the Medical Faculty Mannheim at Heidelberg University. In close collaboration with the coordinating institution, the Institute of Medical Biostatistics, Epidemiology and Informatics at University Medical Centre Mainz is conducting a prospective cohort study across 14 paediatric departments, child and adolescent psychiatry departments, social paediatric centres and rehabilitation clinics.
The study aims to recruit a sample that reflects the target population as closely as possible, including parents of children with chronic conditions aged 0–18 years and children with chronic conditions aged 10–18 years. It examines children’s and parents’ experiences of and preferences for shared decision-making and participation in healthcare, as well as perceived barriers and facilitators.
Funding
Innovation Fund of the Federal Joint Committee (G-BA)
Collaborating partners
Medical Faculty Mannheim, Heidelberg University
University Medical Center Hamburg-Eppendorf
Heinrich Heine University Düsseldorf
Contact details
Simone Kadel, M.Sc. (research associate)
Email: kadelsim@uni-mainz.de
Dr. med. Michael Eichinger (principal investigator)
Email: eichinger@uni-mainz.de