Exploring the boundaries of ‘good’ Participatory Action Research in times of increasing popularity: dealing with constraints in local policy for digital inclusion

Dedding, Christine; Goedhart, Nicole S.; Broerse, Jacqueline E. W.; Abma, Tineke

doi:10.1080/09650792.2020.1743733

Cited by 32 publications

(40 citation statements)

References 33 publications

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“…The importance of obtaining self-reported information on subjective stress experiences of people with MID is also reflected in the increased recognition in our society that people with (M)ID are full citizens with the same rights as non-disabled persons, meaning that participation and social inclusion should dominate all organized activities (e.g., Devi, 2014;Giesbers et al, 2019). In other words, including the opinions, feelings, and thoughts of people with MID by using self-report measures, fits the call for knowledge democratization, as citizens increasingly demand their say in policies and research affecting them (Anderson, 2017;Dedding et al, 2020). This is important, because self-determination can be seen as an essential dimension of quality of life and is linked to many positive outcomes for people with (M)ID) (Schalock et al, 2002;Wehmeyer, 2007;Frielink et al, 2018).…”

Section: The Added Value Of Self-reported Informationmentioning

confidence: 89%

Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review

et al. 2021

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Stress has a major negative impact on the development of psychopathology and contributes to the onset of adverse physical conditions. Timely recognition and monitoring of stress-related problems are therefore important, especially in client populations that are more vulnerable to stress, such as people with mild intellectual disabilities (MID). Recent research on the use of physiological measures to assess stress levels emphasize that, in addition to these measures, self-report instruments are necessary to gain insight into the individual perception and impact of stress on daily life. However, there is no current overview of self-report stress measures that focus on the experience of stress in the present moment or in daily life. To provide an overview of the existing self-report stress measures for clinicians and researchers, a scoping review was conducted. In addition, to advise clinical professionals on the use of self-report measures of stress for people with MID, the results of an expert consultation were used to refine the preliminary findings. A systematic scoping literature search resulted in a total of 13 self-reported stress measures that met the final inclusion criteria, of which three were developed specifically for assessing stress in adults with MID (GAS-ID, LI, and SAS-ID). For each included self-report stress measure, the psychometric quality, assessment procedure, and suitability for adults with MID were reported. These were supplemented by the findings from the expert consultation. Implications for clinical practice on the use of self-report stress measures, particularly for people with MID, are discussed. Recommendations for future research and development are given.

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Section: The Added Value Of Self-reported Informationmentioning

confidence: 89%

Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review

et al. 2021

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“…In addition, how citizen engagement is evaluated and funded impacts researchers’ latitude regarding engagement practices [ 73 , 75 , 77 ]. Policy expectations steer how research is evaluated [ 28 , 73 , 75 ]. Van Bekkum et al [ 77 ] highlight that UK funders can determine the boundaries of researchers and often view citizen engagement as a ‘problem-solving tool for improving science’ (p. 9) rather than emphasizing the potential of more inclusive approaches driven by democratic imperatives.…”

Section: Discussionmentioning

confidence: 99%

“…The increased popularity means that public engagement has found its way into fields and institutes which are not always acquainted with the approaches underpinning public engagement [ 28 , 73 ]. In particular, the engagement of citizens living in vulnerable circumstances, such as citizens with a low socioeconomic position (SEP), those with an ethnic minority background or citizens with mental health issues, is often seen as complicated and is rarely realized [ 64 , 72 ].…”

Section: Introduction: Engaging Citizens Living In Vulnerable Circumstances In Researchmentioning

confidence: 99%

Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search

et al. 2021

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Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse concerns and corresponding strategies, tools, and methods that could support the inclusion of these citizens in health research. The 40 studies that are included were thematically analysed using the socioecological model. Concerns originate most often on the intrapersonal level of the socioecological model, but concerns were also identified at institutional, community, and policy levels. It is thought-provoking that there is a lack of attention for the research and policy structure in which engagement practices are designed, implemented and evaluated. More research is needed to explore how these cultures could be changed in a way that promotes rather than restrains the engagement of citizens living in vulnerable circumstances in research and policymaking.

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“…An inductive approach was chosen to ensure that themes were effectively linked to the data. 36 One researcher (NG) coded the data which were reviewed and refined by 2 others (TZJ, JW). All authors were involved in the last 3 steps of thematic analysis and agreed upon the final coding scheme, themes, and findings.…”

Section: Methodsmentioning

confidence: 99%

Persistent inequitable design and implementation of patient portals for users at the margins

Goedhart

Zuiderent‐Jerak

Woudstra

et al. 2021

Journal of the American Medical Informatics Association

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Objective Diane Forsythe and other feminist scholars have long shown how system builders’ tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such inequities and mainstream design, this study unravels the (conceptual) assumptions and practices of designers and others responsible for portal implementation in the Netherlands and how citizens living in vulnerable circumstances are included in this process. Materials and methods We conducted semistructured interviews (n = 24) and questionnaires (n = 14) with portal designers, health professionals, and policy advisors. Results In daily design practices, equity is seen as an “end-of-the-pipeline” concern. Respondents identify health care professionals rather than patients as their main users. If patients are included in the design, this generally entails patients in privileged positions. The needs of citizens living in vulnerable circumstances are not prioritized in design processes. Developers legitimize their focus with reference to the innovation-theoretical approach of the Diffusion of Innovations. Discussion and conclusion Although feminist scholars have developed important understandings of the exclusion of citizens living in vulnerable circumstances from portal design, other academic efforts have profoundly shaped daily practices of portal development. Diane Forsythe would likely have taken up this discrepancy as a challenge by finding ways to translate these insights into mainstream systems design.

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Exploring the boundaries of ‘good’ Participatory Action Research in times of increasing popularity: dealing with constraints in local policy for digital inclusion

Cited by 32 publications

References 33 publications

Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review

Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review

Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search

Persistent inequitable design and implementation of patient portals for users at the margins

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