Dataset Information

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

ABSTRACT:

Background

The 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.

Methods

In 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.

Results

A 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.

Conclusions

We 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.

SUBMITTER: Yamaguchi S

PROVIDER: S-EPMC10485983 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Yamaguchi Sakiko S Costello Carrie C Lalonde Corinne C McCarry Sharon S Majnemer Annette A Shikako Keiko K

Research involvement and engagement 20230908 1

<h4>Background</h4>The 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.<h4>Methods</h4>In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arisin ...[more]

PMID: 37684655

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Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

Similar Datasets

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