The Impact of Patient and Family Engagement in Child Health Research: A Scoping Review

Vanderhout, Shelley; Bhalla, Manav; van, A.C. Berkel; Fergusson, Dean; Potter, Beth K.; Karoly, Aliza; Ly, Valentina; Macarthur, Colin

doi:10.1016/j.jpeds.2022.09.030

Cited by 14 publications

(21 citation statements)

References 48 publications

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“…This was in line with a scoping review published by Vanderhout et al They found that the impact of patient and family involvement included enhancing the usefulness or relevance of the findings in general research projects. 11 Staley et al…”

Section: Discussionmentioning

confidence: 99%

“…There is not yet a framework for what types of impact should be measured regarding PRAs; therefore; we used the categories of impact identified by others in general research projects. 11,13,35 These categories were chosen because they are easily explainable and resonate with prior knowledge. The semistructured interviews allowed respondents to suggest additional categories or for the interviewer to ask further questions if a new category was introduced.…”

Section: Categoriesmentioning

confidence: 99%

“…[9][10][11][12] Vanderhout et al found three different forms of impact involving CYP: impact on the research process, on the research team and on the CYP and their families. 11 Other studies have shown that involving CYP in research impacted data analysis 10,12 and data dissemination. 10 These studies are examples of evaluating the impact of involving CYP in paediatric research in general, not PRAs.…”

Section: Introductionmentioning

confidence: 99%

“…Most studies focus on describing PPI processes rather than exploring the impact of PPI 7,8 . Fortunately, there have been researchers who evaluated the impact of involving CYP and their families in paediatric research in general 9–12 . Vanderhout et al found three different forms of impact involving CYP: impact on the research process, on the research team and on the CYP and their families 11 .…”

Section: Introductionmentioning

confidence: 99%

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‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

Postma,

Luchtenberg,

Verhagen

et al. 2024

Health Expectations

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IntroductionThere is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post‐PPI) activities were planned.MethodsWe conducted a qualitative study using in‐depth interviews to identify and gain an in‐depth understanding of the impact of involving CYP in developing PRAs. The transcripts were uploaded to Atlas.ti to be coded and organised. Dutch‐language interviews were analysed and interpreted together with vocational education and training (VET) students. These students were aged between 14 and 18 years and were training to become nurses.ResultsThree CYP and 15 researchers decided to participate. We focused on three categories of impact: agenda‐setting impact, individual impact and academic impact. Involving CYP creates a more enriched and clarified agenda. It ensured that both CYP and researchers underwent personal or professional growth and development, it created a connection between the people involved, awareness about the importance of involving CYP and it ensured that the people involved had a positive experience. The participants were unable to indicate the academic impact of their PRAs, but they did understand the key factors for creating it. In addition, the need to measure impact was highlighted, with a particular focus on assessing individual impact.DiscussionOur study outlines the diverse subthemes of impact that arise from involving CYP in developing PRAs. Despite the potential of research agendas to amplify CYP voices, only a minority of researchers strategized post‐PPI activities ensuring impactful outcomes, prompting the need for thorough evaluation of various impact forms and consistent alignment with the overarching goal of transforming the research field.Patient or Public ContributionWe involved VET students in the data analysis and interpretation phase by forming a young person advisory group. The data analysis of the interviews analysed by the VET students revealed four distinct themes: 1. Learnt new knowledge. 2. Learnt to collaborate. 3. Learnt to listen. 4. Assessment of the individual impact.

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Section: Discussionmentioning

confidence: 99%

Section: Categoriesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

Postma,

Luchtenberg,

Verhagen

et al. 2024

Health Expectations

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show abstract

“…We also encountered logistical challenges consistent with others. 26 This included staff turnover on the part of the academic team (e.g., students graduating, parental leave), posing a challenge for long-term relationship building with patient partners. Keeping a focus on childhood experiences of anxiety was a priority for us, and this required a nuanced approach.…”

Section: Concernsmentioning

confidence: 99%

The League: A person‐centred approach to the development of social robotics for paediatric anxiety

Dosso,

Kailley,

Robillard

2024

Health Expectations

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BackgroundSocial robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient‐oriented research, particularly in the overlap between technology and mental health, have been historically limited.ObjectiveIn this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co‐creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health.DesignWe engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel (‘the League’) during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey.FindingsEight individuals from a range of anxiety‐related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22–26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient‐centred brain health technology research are discussed.ConclusionsThere is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life.Patient or Public ContributionSix young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.

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Prevalence of patient partner authorship and acknowledgment in child health research publications: an umbrella review

Vanderhout,

Richards,

Butcher

et al. 2023

Journal of Clinical Epidemiology

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The Impact of Patient and Family Engagement in Child Health Research: A Scoping Review

Cited by 14 publications

References 48 publications

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

The League: A person‐centred approach to the development of social robotics for paediatric anxiety

Prevalence of patient partner authorship and acknowledgment in child health research publications: an umbrella review

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