Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review

Moore, Gaye; Wilding, Helen; Gray, Kathleen; Castle, David

doi:10.2196/11474

Cited by 57 publications

(37 citation statements)

References 147 publications

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“…They also desired video testimonials of experiences from young adults that had already transitioned [73]. Given that stories can increase the quality of medical decisions, and improve health judgements [74], future research could use a structured framework of participatory design to develop informational resources designed to meet ADHD specific needs [75].…”

Section: Discussionmentioning

confidence: 99%

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

et al. 2019

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Background: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. Methods: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. Results: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. Conclusions: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

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Section: Discussionmentioning

confidence: 99%

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

et al. 2019

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“…Looking at the literature on participatory methods to develop eHealth, a recent systematic literature review showed that 24 frameworks have been used [11]. However, as many studies do not refer to a framework, more attention is needed on the methodologies employed [11].…”

Section: Participatory Design Methodologymentioning

confidence: 99%

Generative Participatory Design Methodology to Develop Electronic Health Interventions: Systematic Literature Review

Vandekerckhove¹,

Mul²,

Bramer³

et al. 2020

J Med Internet Res

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Background Generative participatory design (PD) may help in developing electronic health (eHealth) interventions. PD is characterized by the involvement of all stakeholders in creative activities. This is different from the traditional user-centered design, where users are less involved. When looking at PD from a research through design perspective, it is important to summarize the reasons for choosing a certain form of generative PD to further develop its methodology. However, the scientific literature is currently unclear about which forms of PD are used to develop eHealth and which arguments are used to substantiate the decision to use a certain form of generative PD. Objective This study aimed to explore the reporting and substantiation of generative PD methodologies in empirical eHealth studies published in scientific journals to further develop PD methodology in the field of eHealth. Methods A systematic literature review following the Cochrane guidelines was conducted in several databases (EMBASE, MEDLINE Ovid, Web of Science, and CINAHL EBSCOhost). Data were extracted on the recruitment and management of stakeholders, the use of tools, and the use of outcome measures. Results Of the 3131 studies initially identified, 69 were selected for qualitative synthesis. The reporting was very variable, depending to a large extent on whether the study stated that reporting on the PD process was a major aim. The different levels of reporting and substantiation of the choices of a recruitment strategy, stakeholder management, and tools and outcome measures are presented. Only a few authors explicitly used arguments directly related to PD guiding principles such as democratic, mutual learning, tacit and latent knowledge, and collective creativity. Even though PD principles were not always explicitly discussed in the method descriptions of the studies, they were implicitly present, mostly in the descriptions of the use of PD tools. The arguments used to substantiate the choices made in stakeholder management, PD tools, and the type of outcome measures adopted point to the involvement of PD principles. Conclusions Studies that have used a PD research methodology to develop eHealth primarily substantiate the choice of tools made and much less the use of stakeholders and outcome measures.

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“…Despite widespread recognition of the importance of end-user involvement in the development and evaluation of dMH interventions [ 10 , 20 , 21 ], there remains a lack of clear reporting on the methods and processes undertaken [ 22 , 23 ]. A popular methodology outlined in the literature is Participatory Design (PD), which involves end users in the co-creation and evaluation of digital health resources as partners [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

Involvement of Indigenous young people in the design and evaluation of digital mental health interventions: a scoping review protocol

et al. 2021

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Background Indigenous young people worldwide are at greater risk of developing mental health concerns due to ongoing inequity and disadvantage. Digital mental health (dMH) interventions are identified as a potential approach to improving access to mental health treatment for Indigenous youth. Although involvement in the development and evaluation of dMH resources is widely recommended, there is limited evidence to guide engagement of Indigenous young people in these processes. This scoping review aims to examine the methods used to involve Indigenous young people in the development or evaluation of dMH interventions. Methods Articles published in English, involving Indigenous young people (aged 10–24 years) in the development or evaluation of dMH interventions, originating from Australia, New Zealand, Canada and the USA will be eligible for inclusion. PubMed, Scopus and EBSCOhost databases (Academic Search Premiere, Computer and Applied Science complete, CINAHL, MEDLINE, APA PsychArticles, Psychology and Behavioural Sciences collection, APA PsychInfo) will be searched to identify eligible articles (from January 1990 onwards). Infomit and Google Scholar (limited to 200 results) will be searched for grey literature. Two reviewers will independently screen citations, abstracts and full-text articles. Study methods, methodologies, dMH intervention details, participant information and engagement, and dissemination methods will be extracted, analysed (utilising content analysis), and qualitatively assessed for alignment with best practice ethical guidelines for undertaking Indigenous health research. A narrative summary of findings will be presented. Reporting will follow the Consolidated Criteria for Strengthening Reporting of Health Research involving Indigenous peoples (CONSIDER) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines. Discussion To date, there are no reviews which analyse engagement of Indigenous young people in the development and evaluation of dMH interventions. This review will appraise alignment of current practice with best practice guidelines to inform future research. It will highlight appropriate methods for the engagement of young people in study processes, providing guidance for health practitioners, policy makers, and researchers working in the field of Indigenous youth and dMH. Systematic review registration Open Science Framework (osf.io/2nkc6).

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Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review

Cited by 57 publications

References 147 publications

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

Generative Participatory Design Methodology to Develop Electronic Health Interventions: Systematic Literature Review

Involvement of Indigenous young people in the design and evaluation of digital mental health interventions: a scoping review protocol

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