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Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team.

ABSTRACT: Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) Shared Experience of Disability, (2) Teaching and Guidance, (3) Acquisition of Skills and Knowledge, and (4) Value of Participation. Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.

SUBMITTER: St John B

PROVIDER: S-EPMC6348152 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team.

St John Brittany B Mihaila Iulia I Dorrance Katelyn K DaWalt Leann Smith LS Ausderau Karla K KK

Intellectual and developmental disabilities 20180801 4

Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate st ...[more]

PMID: 30024848

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Project description:INTRODUCTION:The aim of this review is to answer the following question: Does assistive technology contribute to social inclusion for people with intellectual disability? Previous research on assistive technology has focused on socioeconomic impacts such as education, employment and access to healthcare by people with intellectual disability. There is a need to consolidate evidence on the interaction between intellectual disability, assistive technology, community living and social inclusion. METHODS AND ANALYSIS:The review will consider studies from all settings: geographical, socioeconomic and care (institutional and community care), published in English. Studies reported in other languages with abstracts in English will be included if they can be translated using Google Translate, otherwise such studies will be included in the appendix. The review will include both qualitative and quantitative studies. The intervention in this review refers to the use of assistive technology to promote community participation or interpersonal relationships (social inclusion) for people with intellectual disability. The outcomes will be behavioural and social benefits of using assistive technology by people with intellectual disability. Enhanced interpersonal relationships and community participation by people with intellectual disability. Data analysis will be in two phases. The first phase will involve analysis of individual study designs separately. The second phase will be narrative/thematic synthesis of all study groups. ETHICS:The review will not create any ethical or safety concerns. DISSEMINATION:At least one peer-reviewed article in a leading journal such as the BMJ is planned. The findings will also be disseminated through a seminar session involving internal audience at Trinity College Dublin and within the Assistive Technologies for people with Intellectual Disability and Autism research programme. PROSPERO REGISTRATION NUMBER:CRD42017065447; Pre-results.

Project description:Background:There is increasing evidence that research misbehaviour is common, especially the minor forms. Previous studies on research misbehaviour primarily focused on biomedical and social sciences, and evidence from natural sciences and humanities is scarce. We investigated what academic researchers in Amsterdam perceived to be detrimental research misbehaviours in their respective disciplinary fields. Methods:We used an explanatory sequential mixed methods design. First, survey participants from four disciplinary fields rated perceived frequency and impact of research misbehaviours from a list of 60. We then combined these into a top five ranking of most detrimental research misbehaviours at the aggregate level, stratified by disciplinary field. Second, in focus group interviews, participants from each academic rank and disciplinary field were asked to reflect on the most relevant research misbehaviours for their disciplinary field. We used participative ranking methodology inducing participants to obtain consensus on which research misbehaviours are most detrimental. Results:In total, 1080 researchers completed the survey (response rate: 15%) and 61 participated in the focus groups (3 three to 8 eight researchers per group). Insufficient supervision consistently ranked highest in the survey regardless of disciplinary field and the focus groups confirmed this. Important themes in the focus groups were insufficient supervision, sloppy science, and sloppy peer review. Biomedical researchers and social science researchers were primarily concerned with sloppy science and insufficient supervision. Natural sciences and humanities researchers discussed sloppy reviewing and theft of ideas by reviewers, a form of plagiarism. Focus group participants further provided examples of particular research misbehaviours they were confronted with and how these impacted their work as a researcher. Conclusion:We found insufficient supervision and various forms of sloppy science to score highly on aggregate detrimental impact throughout all disciplinary fields. Researchers from the natural sciences and humanities also perceived nepotism to be of major impact on the aggregate level. The natural sciences regarded fabrication of data of major impact as well. The focus group interviews helped to understand how researchers interpreted 'insufficient supervision'. Besides, the focus group participants added insight into sloppy science in practice. Researchers from the natural sciences and humanities added new research misbehaviours concerning their disciplinary fields to the list, such as the stealing of ideas before publication. This improves our understanding of research misbehaviour beyond the social and biomedical fields.

Project description:BackgroundCo-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palliative and end of life care (PEoLC) has been highlighted, yet few recommendations exist regarding best practice for involving inclusion health groups (i.e., groups that are socially excluded, typically experiencing multiple disadvantages that contribute to poor health outcomes).AimsTo identify and synthesise qualitative literature outlining barriers and facilitators for involving four inclusion health groups (individuals with lived experience of: homelessness, substance use disorder, incarceration or exchanging sex for money) in PEoLC research, from the perspectives of both the researchers and individuals with lived experience.MethodsThis report is a rapid review with thematic synthesis methodology. Three electronic databases were searched (2012-30th August 2022). Thematic synthesis was used to generate themes across qualitative studies.ResultsThree qualitative studies were eligible for inclusion. Two involved individuals with lived experience of incarceration, and one lived experience of homelessness. No papers outlined best-practice guidance for co-research; all offered reflections on the co-research process. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma; fear of tokenism; pre-conceived views and the emotional burden of research. Successes and benefits included: advanced level of insight, a two-way learning opportunity and relatability of lived experience co-researchers.ConclusionsThis review did not identify any best-practice guidance for co-production of PEoLC research with inclusion health groups. There are few, good quality, qualitative studies offering insight into challenges and facilitators for lived experience co-researcher involvement. Further research and formal policy development is required to produce formal best-practice guidance to support safe, impactful inclusion in PEoLC research. It is important that researchers work together with people who have lived experience of the topic they are researching. Palliative care is specialised medical care for people living with a terminal illness. There is some collaboration between researchers and people with lived experience in palliative and end-of-life care research. However, some groups of people have been excluded. This includes people experiencing homelessness, or people with drug or alcohol addictions. This review aimed to understand what works and what doesn't work when involving four excluded groups in palliative and end-of-life research. These groups were people experiencing homelessness, those who had spent time in prison, people with drug or alcohol disorders, and people who exchanged sex for money. This review used a shortened methodology, which allowed it to be done quickly. Three online academic databases (Medline, PubMed, PsychINFO) were searched for research projects: three papers were included in the review. No clear guidance for working with these groups was found. Analysis identified themes across papers. Challenges for collaboration included: appropriate payment methods; overcoming stigma; fear of being talked down to,; assumptions made before meeting people, and the potential of becoming upset. Successes and benefits included: better understanding of the research topic, the opportunity to learn from one another, and how research participants could relate to lived experience co-researchers. There are few, good quality papers, but more research is needed to produce guidance to support safe, impactful collaboration.

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Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team.

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Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team.

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