Sonia Dahan1, Claude Julie Bourque2, Martin Reichherzer3, Moussa Ahmed4, Prince Josée5, Ginette Mantha6, Fanny Labelle3, Annie Janvier7. 1. CHU Sainte-Justine Research Center, Montréal, Québec, Canada; Unité d'éthique clinique, CHU Sainte-Justine, Montréal, Québec, Canada; Division of Neonatology, CHU Sainte-Justine, Montréal, Québec, Canada. 2. CHU Sainte-Justine Research Center, Montréal, Québec, Canada; Unité d'éthique clinique, CHU Sainte-Justine, Montréal, Québec, Canada; Unité de recherche en éthique clinique et partenariat famille (UREPAF), Montréal, Québec, Canada. 3. Division of Neonatology, CHU Sainte-Justine, Montréal, Québec, Canada. 4. CHU Sainte-Justine Research Center, Montréal, Québec, Canada; Division of Neonatology, CHU Sainte-Justine, Montréal, Québec, Canada; Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada. 5. Parent Representatives. 6. Parent Representatives; Préma-Québec, Association for Preterm Infants, Longueuil, Québec, Canada. 7. CHU Sainte-Justine Research Center, Montréal, Québec, Canada; Unité d'éthique clinique, CHU Sainte-Justine, Montréal, Québec, Canada; Division of Neonatology, CHU Sainte-Justine, Montréal, Québec, Canada; Unité de recherche en éthique clinique et partenariat famille (UREPAF), Montréal, Québec, Canada; Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada; Bureau de l'Éthique Clinique (BEC), Université de Montréal, Montréal, Québec, Canada; Unité de soins palliatifs, CHU Sainte-Justine, Montréal, Québec, Canada. Electronic address: anniejanvier@hotmail.com.
Abstract
OBJECTIVES: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. STUDY DESIGN: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and providers who worked with them. Mixed methods were used to analyze results. RESULTS: Thirty resource parents and patients were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31), and research (n = 209); 7 initiatives were described to illustrate the positive impact of family stakeholders on clinical care, teaching, and/or research. Resource parents and patients had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 in more complex activities. In the questionnaire, family stakeholders all described positive impacts associated with their participation and benefits to themselves, such as meaning making. Three resource parents reported traumatic memories that occurred during medical simulations. The majority of providers report that resource parents and patients improved their projects, but some also report this new collaboration is complex. CONCLUSIONS: Although stakeholder participation increasingly is recommended, practical knowledge and the impact of their participation is scarce. Having several resource parents and patients bring their contributions may be more valuable than a few "expert stakeholders." Recruiting and orienting resource parents and patients toward different types of activities should take into account the complexity and risks of the tasks. Family stakeholders are appreciated and have a positive impact on projects in which they are involved.
OBJECTIVES: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. STUDY DESIGN: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and providers who worked with them. Mixed methods were used to analyze results. RESULTS: Thirty resource parents and patients were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31), and research (n = 209); 7 initiatives were described to illustrate the positive impact of family stakeholders on clinical care, teaching, and/or research. Resource parents and patients had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 in more complex activities. In the questionnaire, family stakeholders all described positive impacts associated with their participation and benefits to themselves, such as meaning making. Three resource parents reported traumatic memories that occurred during medical simulations. The majority of providers report that resource parents and patients improved their projects, but some also report this new collaboration is complex. CONCLUSIONS: Although stakeholder participation increasingly is recommended, practical knowledge and the impact of their participation is scarce. Having several resource parents and patients bring their contributions may be more valuable than a few "expert stakeholders." Recruiting and orienting resource parents and patients toward different types of activities should take into account the complexity and risks of the tasks. Family stakeholders are appreciated and have a positive impact on projects in which they are involved.
Authors: Fiona A Forth; Florian Hammerle; Jochem König; Michael S Urschitz; Philipp Neuweiler; Eva Mildenberger; André Kidszun Journal: Trials Date: 2021-12-06 Impact factor: 2.279