Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?

Novak‐Pavlic, Monika; Gorter, Jan Willem; Phoenix, Michelle P; Micsinszki, Samantha; Pozniak, Kinga; Li, Lin; Nguyen, Linda Anh B.; Soper, Alice K; Bootsma, Jael N; Buchanan, Francine; Davis, Hanae; Malek, Sandra Abdel; Meeteren, Karen M van; Rosenbaum, Peter

doi:10.17294/2330-0698.1975

Cited by 6 publications

(4 citation statements)

References 14 publications

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“…We offered different options for the customized sweaters, and YER partners selected the design that they preferred. These different options for compensation were a way to show appreciation for the engagement of each YER partner, which aligns with experiences that other research teams have had when providing compensation for youth and family partners in research [ 34 ]. Our bonding experiences extend beyond the purpose of compensation, and was a way for us to build connections, trust, and a sense of belonging with the team.…”

Section: Methodsmentioning

confidence: 83%

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

Dong,

Nguyen,

Cross

et al. 2023

Res Involv Engagem

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Background Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18–25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. Methods Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. Results Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. Conclusion This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth.

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Section: Methodsmentioning

confidence: 83%

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

Dong,

Nguyen,

Cross

et al. 2023

Res Involv Engagem

Self Cite

View full text Add to dashboard Cite

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“…The overall evidence-base and guidance for patient/public engagement in research continues to grow [ 9 , 20 , 21 ], and includes enhanced guidance for partnership compensation [ 22 , 23 ]. Similar to our findings, patient engagement frameworks and recommendations encourage research teams to dedicate time and resources to the development of strong, trusting, and respectful relationships [ 7 , 9 ].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2023

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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.

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“…Since study inception, the SibYAC members have actively engaged in multiple study phases, including (1) preparation, such as co‐creating recruitment materials and pilot testing the interview guide; (2) execution, such as recruiting participants by sharing the study information in their networks; and (3) knowledge implementation, such as co‐presenting experiences of our partnership at local, national and international conferences. All SibYAC members received compensation for their engagement in our partnership, which was based on a discussion about how they preferred to be compensated as well as the guidelines by the CHILD‐BRIGHT Network in Canada (CHILD‐BRIGHT Network, 2020; Nguyen et al, 2021; Novak‐Pavlic et al, 2023).…”

Section: Methodsmentioning

confidence: 99%

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

Nguyen,

Jack,

Davis

et al. 2024

Child

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BackgroundDuring the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision‐making process of how siblings chose these roles.MethodsIn this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood‐onset neurodisability and spoke English. Semi‐structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision‐making process associated with these roles. Our team partnered with siblings with lived experience in all study phases.ResultsNineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four‐phase decision‐making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings.ConclusionsSiblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

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Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?

Cited by 6 publications

References 14 publications

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

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

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

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