Participatory Research in Health Care

Maguire, Kath; Britten, Nicky

doi:10.1002/9781119410867.ch14

Cited by 4 publications

(3 citation statements)

References 23 publications

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“…As the field continues to move forward with pragmatic/effectiveness trials about RIT and other NDBIs, researchers need to further characterize and understand provider decision‐making, treatment modifications, and effectiveness (Nelson et al, 2012; Vivanti & Stahmer, 2018). Some “deep dive” techniques for addressing these areas include applying principles of community‐based participatory research (e.g., interviews, focus groups to gain provider insights; Maguire & Britten, 2019), service design (co‐creation and production; Ku & Lupton, 2020; Stickdorn et al, 2018), and objective measurement (e.g., videotapes sessions, dosage logs; Stahmer et al, 2015; Wilczynski et al, 2017). These techniques help establish a more active research paradigm (Hughes et al, 2008; Wallerstein et al, 2017), which has the potential to facilitate a faster iterative process for implementation and intervention development and reduce the theory‐to‐practice gap.…”

Section: Discussionmentioning

confidence: 99%

The implementation of reciprocal imitation training in a Part C early intervention setting: A stepped‐wedge pragmatic trial

2021

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Despite the development of several evidence‐based Naturalistic Developmental Behavioral Interventions (NDBIs), very few have been adapted for use in community‐based settings. This study examines the implementation of Reciprocal Imitation Training (RIT)—an NDBI—by community Early Intervention (EI; IDEA Part C) providers serving toddlers from birth to 3 years. Of the 87 EI providers enrolled from 9 agencies in 4 counties across Washington State, 66 were included in the current sample. A stepped‐wedge design was used to randomly assign counties to the timing of RIT training workshops. Self‐report measures of practice and self‐efficacy regarding ASD care were collected at baseline (T1, T2) and 6‐months and 12‐months post‐training (T3, T4). At T3 and T4, providers reported on RIT adoption and rated items about RIT feasibility and perceived RIT effectiveness; at T4, they also reported on child characteristics that led to RIT use and modifications. From pre‐training to post‐training, there were significant increases in providers' self‐efficacy in providing services to children with ASD or suspected ASD. At T3 and T4, provider ratings indicated high levels of RIT adoption, feasibility, and perceived RIT effectiveness. At T4, providers indicated that they most commonly: (a) initiated RIT when there were social‐communication or motor imitation delays, or an ASD diagnosis; and (b) made modifications to RIT by repeating elements, blending it with other therapies, and loosening its structure. While additional research is needed, RIT may help families get an early start on accessing specialized treatment within an established infrastructure available across the United States. Lay Summary Reciprocal imitation training (RIT) is an evidence‐based treatment for ASD that might be a good fit for use by intervention providers in widely accessible community‐based settings. After attending an educational workshop on RIT, providers reported feeling more comfortable providing services to families with ASD concerns, used RIT with over 400 families, and believed that RIT improved important social communication behaviors.

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Section: Discussionmentioning

confidence: 99%

The implementation of reciprocal imitation training in a Part C early intervention setting: A stepped‐wedge pragmatic trial

2021

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“…Similarly, Participant 17 spoke of the importance of "levelling the playing field in terms of the way that we engage in research to address some of the barriers, to identify what they are, to build the trust that's necessary with communities, including healthcare workers. " This participant emphasised the benefit of using participatory action approaches and models of co-production [38] from the very beginning of the research endeavour.…”

Section: Improving Community Involvement In Researchmentioning

confidence: 99%

“Data makes the story come to life:” understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom—a qualitative study

Reed‐Berendt

Pareek

2022

BMC Med Ethics

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The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research.

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“…To improve this, the disability rights movement has adopted the motto 'nothing about us, without us', advocating for participation to extend more effectively to research, so that evidence is more often made with people with disabilities, not on or about them (Fleischer and Zames, 2011). The movement towards greater participation is part of a broader concern about the different perspectives implicit in research, and the power of different groups such as users of services in research on these issues (Beresford, 2002;Duncan and Oliver, 2020;Maguire and Britten, 2020). However, there are many ways in which participation can be conceptualised.…”

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confidence: 99%

The many faces of disability in evidence for policy and practice: embracing complexity

Rivas

Tomomatsu

Gough

2021

Evidence &Amp; Policy

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Background: This special issue examines the relationship between disability, evidence, and policy.Key points: Several themes cut across the included papers. Despite the development of models of disability that recognise its socially constructed nature, dis/ableism impedes the involvement of people with disability in evidence production and use. The resultant incomplete representations of disability are biased towards its deproblematisation. Existing data often homogenise the heterogeneous. Functioning and impairment categories are used for surveys, research recruitment and policy enactments, that exclude many. Existing data may crudely evidence some systematic inequalities, but the successful and appropriate development and enactment of disability policies requires more contextual data. Categories and labels drawn from a deficit model affect social constructions of identity, and have been used socially and politically to justify the disenfranchisement of people with disability. Well rehearsed within welfare systems, this results in disempowered and devalued objects of policy, and, as described in one Brazilian paper, the systematic breakup of indigenous families. Several studies show the dangers of policy developed without evidence and impact assessments from and with the intended beneficiaries.Conclusions and implications: There is a need to mitigate barriers to inclusive participation, to enable people with disability to collaborate as equals with other policy actors. The combined application of different policy models and ontologies, currently in tension, might better harness their respective strengths and encourage greater transparency and deliberation regarding the flaws inherent in each. Learning should be shared across minority groups.

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Participatory Research in Health Care

Cited by 4 publications

References 23 publications

The implementation of reciprocal imitation training in a Part C early intervention setting: A stepped‐wedge pragmatic trial

The implementation of reciprocal imitation training in a Part C early intervention setting: A stepped‐wedge pragmatic trial

“Data makes the story come to life:” understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom—a qualitative study

The many faces of disability in evidence for policy and practice: embracing complexity

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