NDLI: Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study

Content Provider	Springer Nature : BioMed Central
Author	Kim, Laesa Costello, Carrie Golding, Michael A. Janse van Rensburg, Chloé Protudjer, Jennifer L. P. Wittmeier, Kristy
Abstract	Background It is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is also common for parent partners to be asked to share information about a study through their personal networks, which supports study recruitment. In this parent-led study, we explored parents' experiences when working together with researchers in patient-oriented research studies, in relation to study recruitment. Methods Demographic data were collected through a brief online survey (SurveyMonkey®) and analysed descriptively (n, %, median (interquartile range; IQR)). Qualitative data were collected through focus groups and interviews (July to October 2021), transcribed verbatim, and analysed thematically. Parent co-leads were involved in every stage of the study, including study design, recruitment, data collection, analysis, interpretation, and knowledge mobilization. Results Fifteen parents (n = 14 women) who had research partnership experience participated in this study. Most (n = 13) participants self-identified as White or of European descent. The majority (n = 10) had partnered in 1–3 research projects, while five participants had partnered in 4 + projects. Parents had a median of 3 years (IQR: 5) of partnership experience. We identified the following three themes: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the research topic, and a desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant’s willingness and ability to share study materials. Learned decision making reflected parents’ evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants’ recommendations for researchers who work with parent partners, and recommendations for parents as they approach research partnerships. Conclusions Experiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome. This study yields a set of recommendations guiding future research that engages parents as team members.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00470-1.pdf
Ending Page	10
Page Count	10
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00470-1
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-07-26
Access Restriction	Open
Subject Keyword	Medicine Public Health Community networks Patient-oriented research Patient partner Parent partnership Parents Recruitment Qualitative research Risks & benefits Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Health Professions Health (social science)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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

Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study

Forming a Parent And Clinician Team (PACT) in a cohort of healthy children

The value of partnership in patient-driven as well as in researcher-driven projects

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

Stroke survivors partner in research: a case example of collaborative processes

Solutions for Kids in Pain: Embedding and actioning patient partnership in a national knowledge mobilization network

Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective

Recruiting patients as partners in health research: a qualitative descriptive study

Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study

Similar Documents

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

Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study

Forming a Parent And Clinician Team (PACT) in a cohort of healthy children

The value of partnership in patient-driven as well as in researcher-driven projects

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

Stroke survivors partner in research: a case example of collaborative processes

Solutions for Kids in Pain: Embedding and actioning patient partnership in a national knowledge mobilization network

Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective

Recruiting patients as partners in health research: a qualitative descriptive study

Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study