TOwards enhancing Paediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design

Janet Rennick; Francine Buchanan; Eyal Cohen; Franco Carnevale; Karen Dryden-Palmer; Patricia Fontela; Hema Patel; Saleem Razack; Isabelle St-Sauveur; Susan Law

doi:10.1136/bmjopen-2022-066459

TOwards enhancing Paediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design

BMJ Open. 2022 Sep 7;12(9):e066459. doi: 10.1136/bmjopen-2022-066459.

Authors

Janet Rennick^{1

2

3}, Francine Buchanan⁴, Eyal Cohen^{5

6}, Franco Carnevale², Karen Dryden-Palmer^{7

8}, Patricia Fontela³, Hema Patel^{3

9}, Saleem Razack^{3

10}, Isabelle St-Sauveur^{2

11}, Susan Law^{12

13}

Affiliations

¹ Department of Nursing, Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada janet.rennick@muhc.mcgill.ca.
² Ingram School of Nursing, McGill University, Montreal, Quebec, Canada.
³ Department of Pediatrics, McGill University, Montreal, Quebec, Canada.
⁴ Child Health and Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁵ Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁶ Department of Pediatrics, Edwin S.H. Leong Centre for Healthy Children and Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Ontario, Canada.
⁷ Pediatric Intensive Care Unit, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁸ Center for Safety Research, Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, Ontario, Canada.
⁹ Division of General Pediatrics, McGill University Health Centre, Montreal, Quebec, Canada.
¹⁰ Institute for Health Sciences Education, McGill University, Montreal, Quebec, Canada.
¹¹ Pediatric Day Centre, Intermediate Complexity Coordination and Navigation (I-CCAN) Service, Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada.
¹² Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Ontario, Canada.
¹³ Institute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.

Abstract

Introduction: Advances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation.

Methods: A mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC.

Ethics and dissemination: The McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.

Keywords: EDUCATION & TRAINING (see Medical Education & Training); MEDICAL EDUCATION & TRAINING; Paediatric intensive & critical care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Caregivers*
Child
Critical Care
Delivery of Health Care*
Humans
Patient-Centered Care
Research Design

Grants and funding

399884/CIHR/Canada