Article Text

Download PDFPDF
123 Towards recommendations for strengthening shared decision making and participation in care processes among children with special healthcare needs and parents: protocol of the mixed methods PedSDM study
  1. Simone Kadel1,
  2. Jana Huber2,
  3. Sonja Görs3,
  4. Marielle Wirth3,
  5. Angélique Herrler3,
  6. Maike Heiser4,
  7. David Zybarth4,
  8. Freia De Bock3,
  9. Laura Inhestern4,
  10. Michael Eichinger1,2
  1. 1Institute of Medical Biostatistics, Epidemiology, and Informatics, University Medical Center of the Johannes Gutenberg-University Mainz, 55131 Mainz, Germany
  2. 2Center for Preventive Medicine and Digital Health, Medical Faculty Mannheim, Heidelberg University, 68167 Mannheim, Germany
  3. 3Department of General Pediatrics, Neonatology and Pediatric Cardiology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, 40225 Düsseldorf, Germany
  4. 4Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany


Introduction Despite the potential of shared decision making (SDM) and participation in care processes (PCP) to strengthen quality of care for children with special healthcare needs (CSHCN) and parents, implementation in routine care remains challenging. The PedSDM Study therefore aims to (1) identify research gaps, (2) investigate preferences for and current implementation of SDM and PCP, potential effects and implementation barriers and (3) develop evidence-based recommendations.

Methods The project is based on evidence gap maps, highlighting research gaps concerning SDM and PCP, and a sequential mixed methods study comprising four parts. To derive condition- and provider- generic recommendations, we will recruit CSHCN with different chronic conditions, parents and service providers from different disciplines (e.g., physicians, allied health professionals) in 15 secondary and tertiary healthcare facilities. (1) Based on validated instruments and field notes, structured observations of CSHCN-parent-provider consultations will assess behavior of CSHCN and parents during SDM. (2) Interviews with providers will be based on guides and analyzed using qualitative content analysis. (3) Qualitative work will inform the content of a cohort study involving 960 parents and CSHCN. Two surveys will assess, inter alia, preferences for and implementation of SDM and PCP, potential effects and implementation barriers. (4) A cross-sectional provider survey will investigate views on current implementation and future potential of SDM and PCP including feasibility and required competencies. Recommendations to strengthen SDM and PCP will be developed in stakeholder workshops.

Discussion PedSDM will provide comprehensive evidence on SDM and PCP in routine care of CSHCN, highlighting specific implementation barriers and research gaps. Study results will inform the development of an evidence- and consensus-based clinical practice guideline for SDM and PCP among CSHCN and parents in Germany.

Conclusion Until official clinical practice guidelines become available, PedSDM will highlight opportunities for providers to strengthen SDM and PCP in the target group.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.