Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test

Hannon, Tamara S; Moore, Courtney; Lynch, Dustin; Yazel-Smith, Lisa; Claxton, Gina; Carroll, Aaron E.; Wiehe, Sarah E.

doi:10.2196/jopm.9652

Cited by 13 publications

(31 citation statements)

References 43 publications

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“…The PRISMA diagram below ( Fig 1 ) illustrates the article search, screening, and review process. The PPIE was undertaken as part of research conducted in the United Kingdom (n = 32) [ 18 – 20 , 22 , 36 – 39 , 42 , 44 , 45 , 47 – 67 ], Australia (n = 3) [ 14 , 43 , 46 ], United States (n = 3) [ 21 , 35 , 41 ], Canada (n = 1) [ 13 ] and New Zealand (n = 1) [ 40 ]. The majority of the articles (n = 37) were published after 2010 [ 13 , 18 – 22 , 35 – 45 , 47 – 52 , 54 – 67 ] with three published between 2000–2010 [ 14 , 46 , 53 ].…”

Section: Resultsmentioning

confidence: 99%

“…Commonly, the term patient and public involvement (PPI) [ 18 – 20 , 36 , 37 , 44 , 45 , 47 – 49 , 54 – 58 , 60 , 64 – 67 ] was used, alongside terms such as involvement [ 38 , 53 , 61 ], user involvement [ 50 , 52 ], advisory [ 40 ], and engagement [ 39 ]. Where PPIE was integral to the research methodology, participatory methodology terms were frequently used included participatory design [ 13 , 14 , 43 , 46 , 51 , 59 ], community-based participatory research (CBPR) [ 41 ], peer research [ 35 ], co-research [ 42 , 63 ], co-design [ 21 ], and co-production [ 62 ]. One study described adopting a child rights based approach (CRBA) [ 22 ].…”

Section: Resultsmentioning

confidence: 99%

“…In 14 papers [ 13 , 19 , 20 , 35 , 36 , 38 , 39 , 42 , 45 , 54 , 57 , 63 , 65 , 66 ], looser definitions often without reference to literature, were offered using terms such as research ‘with’ and ‘by’ young people. In ten papers, no definition of the terminology was provided [ 14 , 21 , 40 , 44 , 49 , 52 , 55 , 57 , 59 , 64 ]. No difference in the inclusion and clarity of definition for PPIE activity was found between older or more recent publications, and the provision of a clear definition was not dependent on the terminology used.…”

Section: Resultsmentioning

confidence: 99%

“…Twenty-seven papers [ 13 , 14 , 19 , 36 – 40 , 44 – 55 , 57 , 58 , 60 , 61 , 64 – 66 ] gave no explicit reference to any conceptual models or theoretical influences which had informed their approach to PPIE in the study. Thirteen papers referred to a conceptual or theoretical model as informing their approach to PPIE: three referred to participatory design/methodology [ 42 , 43 , 59 ] and the remainder to a child rights-based approach (CRBA) [ 22 ], co-operative enquiry [ 63 ], co-production model [ 62 ], empowerment theory [ 41 ], experience based co-design (EBCD) [ 20 ], patient experience framework [ 57 ], responsive and managerial public involvement [ 18 ], systems design [ 21 ], user-centred design [ 67 ] and youth participatory action research [ 35 ].…”

Section: Resultsmentioning

confidence: 99%

“…Child and young person advisory groups [ 8 ] are one way of involving children and young people. Their input to research studies can be focused on engagement at one time point such as the development of materials [ 18 , 19 ] or involvement in data analysis [ 20 ], through to more active and continuous engagement across the lifespan of a study as seen in studies using co-design [ 21 ] and co-production [ 22 ] methodologies.…”

Section: Introductionmentioning

confidence: 99%

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Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review

et al. 2021

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Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

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