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Shadowing as a qualitative research method for intellectual disability research: opportunities and challenges
- Authors:
- VAN DER WEELE Simon, BREDEWOLD Femmianne
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(4), 2021, pp.340-350.
- Publisher:
- Taylor and Francis
Background: While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method: The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Results: Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving “voice” to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Conclusions: Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships. (Edited publisher abstract)
Analyzing roles, barriers, and supports of co‐researchers in inclusive research
- Authors:
- VEGA-CORDOVA Vanessa, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 17(4), 2020, pp.318-331.
- Publisher:
- Wiley
Current research demands that we rethink the roles of people with intellectual disabilities (IDs) in the research that affects them. The paradigm of inclusive research responds to this need. Although the specialized literature is progressively adopting a more inclusive research approach, the study of roles and relationships within inclusive research and reflections on the process of doing participatory research has received little attention. From a qualitative approach and a participatory action research framework this study aims to: (1) report the experience of involving adults with IDs in inclusive research, and their improvements in terms of developed competencies; (2) identify their perceived roles as researchers, and (3) describe their perceived barriers and facilitators during the research process. This study describes the experiences of 11 adults with IDs who participated in a project aimed at evaluating the cognitive accessibility of public spaces and services in a Chilean city for 14 months. Different roles emerged, ranging from apprentices to experts by experience, and were adopted to different extent by co‐researchers as the process evolved. Co‐researchers developed conceptual, procedural, and attitudinal skills. They also identified contextual and personal barriers as well as facilitators consisting of natural, professional, and community supports, as well as assisted technology while performing their role as co‐researchers. Inclusive research is a challenging, evolving process and it requires ongoing support and feedback to monitor the process and the outcomes to guarantee that all the participants perform different roles involved while meeting the goals of the research. (Edited publisher abstract)
“I really want people to use our work to be safe”…Using participatory research to develop a safety intervention for adults with intellectual disability
- Authors:
- HUGHES Rosemary B., et al
- Journal article citation:
- Journal of Intellectual Disabilities, 24(3), 2020, pp.309-325.
- Publisher:
- Sage
- Place of publication:
- London
People with intellectual disability experience disproportionately high rates of interpersonal violence (IPV) due, in part, to disability-related risks that often can be minimized through targeted intervention. In this article, the authors describe using an academic and community participatory research approach to develop and test the feasibility of an accessible IPV prevention program for people with intellectual disability. The Safety Class, which is an interactive, structured, eight-session, weekly face-to-face group program, was found feasible for implementation in an efficacy study. Working in partnership with the intellectual disability community through all phases of the project helps ensure the relevance, inclusion, and accessibility of The Safety Class. (Edited publisher abstract)
The while of participation: a systematic review of participatory research involving people with sensory impairments and/or intellectual impairments
- Authors:
- RIX Jonathan, et al
- Journal article citation:
- Disability and Society, 35(7), 2020, pp.1031-1057.
- Publisher:
- Taylor and Francis
This paper reports on the first systematic review of literature associated with participatory research involving people identified with sensory impairments and/or intellectual impairments. It was initiated as part of ARCHES, an European Union-funded heritage project. The review sought to examine processes and activities used for organising participatory research involving people identified with sensory and/or intellectual impairments. 54 papers were included, involving studies from 14 countries and varying numbers of participants across different time scales. Insights were gained into use of advisory groups, organisation and support, collecting and analysing data, sharing findings and activity types. Emergent themes enabled an identification of the while of participation. The while represents the tensions, outcomes and component parts which are evident within the multiple moments that span an experience of participatory research. Participation is not about types of activity but how any activity is undertaken. (Edited publisher abstract)
Inclusive research: an Irish perspective
- Authors:
- SALMON Nancy, AOIFE Barry, HUTCHINS Enid
- Journal article citation:
- British Journal of Learning Disabilities, 46(4), 2018, pp.268-277.
- Publisher:
- Wiley
Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change. Method: This study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland. Results: Thematic analysis using Atlas.ti software yielded three themes: “Continuum of inclusive research,” “Value of inclusive research” and “Power relations within inclusive research.” Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors. Conclusions: This study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted. (Publisher abstract)
We are “both in charge, the academics and self‐advocates”: empowerment in community‐based participatory research
- Authors:
- STACK Erin E., MCDONALD Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 15(1), 2018, pp.80-89.
- Publisher:
- Wiley
Background: Community‐based participatory research (CBPR) brings academics and community members into research partnerships. Although power is central to CBPR, little is known about community partners' experience with empowerment in CBPR with people with developmental disabilities. We interviewed 15 community partners with and without developmental disabilities about empowerment in CBPR. Community partners identified empowered mindsets and behaviours and CBPR factors that facilitated or hindered their empowerment. Our findings indicate CBPR provides opportunities for people with developmental disabilities to gain and develop important qualities, such as empowerment. However, CBPR partnerships need to be carefully constructed and monitored to fully realise positive outcomes. (Edited publisher abstract)
Peer-reviewed articles on inclusive research: do co-researchers with intellectual disabilities have a voice?
- Authors:
- STRNADOVA Iva, WALMSLEY Jan
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(1), 2018, pp.132-141.
- Publisher:
- Wiley
Background: Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co-researchers with intellectual disabilities is presented remain underexplored in the literature. Materials and Method: The authors conducted a literature review and analysis of peer-reviewed journal articles reporting on inclusive research. The aim was to explore the ways the voices of co-researchers with intellectual disabilities are represented in published peer-reviewed journal articles. Results: The findings indicate that there are a wide range of ways in which inclusive research projects are reported in peer-reviewed journals. However, the experiences, views and opinions of co-researchers are often either absent or very selectively reported. Conclusions: The article concludes that although inclusive research has proliferated in the 21st century, more attention needs to be paid to the ways in which the voices of co-researchers with intellectual disabilities are heard in formal academic contexts. Guidelines for future practice are offered. (Publisher abstract)
Research with and by people with learning disabilities
- Author:
- DURELL Shirley
- Journal article citation:
- Nursing Times, 112(6/7), 2016, pp.15-18.
- Publisher:
- Nursing Times
People with learning disabilities are not actively involved in research, but inclusive studies can generate findings that are representative of this group of people. This article explores the development of inclusive learning disability research by tracing its background and influences, identifying key characteristics and highlighting some of the challenges in its application. It demonstrates how inclusive research can give people with learning disabilities a voice that will help to inform practice. (Edited publisher abstract)
Deciding what to research: an overview of a participatory workshop
- Authors:
- NORTHWAY Ruth, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.323-327.
- Publisher:
- Wiley
This paper discusses how a participatory workshop with people with learning disabilities was held to try and identify priority areas for research. It is hoped that by sharing these experiences, other people will be encouraged to try similar approaches. (Edited publisher abstract)
Unanticipated ethical issues in a participatory research project with individuals with intellectual disability
- Authors:
- MORGAN Michelle F., CUSKELLY Monica, MONI Karen B.
- Journal article citation:
- Disability and Society, 29(8), 2014, pp.1305-1318.
- Publisher:
- Taylor and Francis
The conduct of a participatory research investigation into the everyday literacy of adults with intellectual disability within the context of a PhD thesis highlighted issues related to the ethics of participatory research and the need to revisit and reconsider ethical guidelines around working with individuals with intellectual disability. Tensions were identified between participatory research ideology and the reality of research experiences, with additional issues arising due to disability in the first author. (Publisher abstract)