Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network

Research Involvement and Engagement

Research

Sharon McCarry¹  Carrie Costello¹  Corinne Lalonde¹  Sakiko Yamaguchi²  Annette Majnemer³  Keiko Shikako³ 

[1] CHILD-BRIGHT Patient-Oriented Research Network, Montreal, Canada;School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada;CHILD-BRIGHT Patient-Oriented Research Network, Montreal, Canada;Research Institute of the McGill University Health Centre, Montreal, Canada;School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada;CHILD-BRIGHT Patient-Oriented Research Network, Montreal, Canada;Research Institute of the McGill University Health Centre, Montreal, Canada;Centre for Interdisciplinary Research in Rehabilitation (CRIR)

[2]  MAB-Mackay, 3500, Blv Décarie, H4A 3J5, Montreal, QC, Canada;

关键词: Parent-partner;    Parent peer mentor;    Patient-oriented research;    Patient engagement;   

DOI  :  10.1186/s40900-023-00481-y

 received in 2023-04-16, accepted in 2023-08-08,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThe CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network.MethodsIn this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners.ResultsA total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM’s support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents’ experiences in partnering with them and how to improve engagement.ConclusionsWe highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

【 图 表 】

Fig. 5

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