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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)
Co-researching with people who have intellectual disabilities: insights from a national survey
- Authors:
- O'BRIEN Patricia, McCONKEY Roy, GARCIA-IRIARTE Edurne
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.65-75.
- Publisher:
- Wiley
In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. (Edited publisher abstract)
Researching together
- Author:
- JOHNSON Kelley
- Journal article citation:
- Learning Disability Today, November 2008, pp.28-30.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The author describes three examples of inclusive research with people with learning disabilities carried out in the Republic of Ireland. The examples show that real outcomes and valuable outcomes can be delivered. The projects involved services in rural Ireland; studying as a student at University and research around bullying and advocacy.
Researchers’ experiences and lessons learned from doing mixed-methods research with a population with intellectual disabilities: Insights from the SOPHIE study
- Authors:
- CORBY Deirdre, SWEENEY Mary Rose
- Journal article citation:
- Journal of Intellectual Disabilities, 23(2), 2019, pp.250-265.
- Publisher:
- Sage
- Place of publication:
- London
Researchers are challenged to provide opportunities for people with intellectual disabilities (IDs) and their families to become participants in research. This article explores the processes and procedures involved in conducting a mixed-methods study. The preparation for the study is described and explained. Recruitment is examined by describing the process and analysing phone calls made to potential participants. Reflections of research team members help to develop the analysis and contribute to a discussion of the fieldwork. Lessons learned show that research projects involving people with IDs and their families need careful planning and have additional costs. The research team requires a mix of expertise. Traditional recruitment methods may not be suitable, and researchers need to build good relationships with gatekeepers so that participants can be contacted directly. Good quality research with people with IDs and their families is possible once suitable strategies are employed throughout the research process. (Edited publisher abstract)
Identifying the key concerns of Irish persons with intellectual disability
- Authors:
- IRIARTE Edurne Garcia, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(6), 2014, pp.564-575.
- Publisher:
- Wiley
Aims: This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. Methods: A national study involving 23 focus groups and 168 persons was conducted in Ireland with people with intellectual disability as co-facilitators. Findings: A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. Discussion: The concerns are discussed within the framework of the United Nations Convention for the Rights of Persons with Disabilities, and implications for transforming service policy are drawn. (Edited publisher abstract)
Family voices: life for family carers of people with intellectual disabilities in Ireland
- Authors:
- CHADWICK Darren D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(2), 2013, pp.119-132.
- Publisher:
- Wiley
Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. The qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. (Edited publisher abstract)
No Longer Researching About Us Without Us: a researcher's reflection on rights and inclusive research in Ireland
- Author:
- JOHNSON Kelley
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(5), September 2009, pp.250-256.
- Publisher:
- Wiley
This essay on ‘No Longer Researching About Us Without Us’, an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland, is the author’s personal reflection, as co-ordinator of the project, on work undertaken by and with people with intellectual disabilities during its 18-month life span. Using two examples from the project, focusing on a coffee shop in a small community, and bullying, this paper explores links between the inclusive research aspect of the project, and the rights of people with intellectual disabilities to participate within their communities. As a result of ‘No Longer Researching About Us Without Us’, it was found that people with intellectual disabilities began to initiate and take action on some issues that were important to them, becoming stronger self advocates, resulting in the development of longer term changes in their role within one service in Ireland.
Parents as co-researchers: a participatory action research initiative involving parents of people with intellectual disabilities in Ireland
- Authors:
- WALMSLEY Jan, MANNAN Hasheem
- Journal article citation:
- British Journal of Learning Disabilities, 37(4), December 2009, pp.271-276.
- Publisher:
- Wiley
This paper evaluates a participatory action research approach to conducting family research in Ireland, where most adults with intellectual disabilities live with their parents. Drawing on participatory research methodology this paper describes how parents of people with intellectual disabilities were recruited and trained by staff of the National Institute for Intellectual Disability, in Ireland, to facilitate focus groups of parents, in order to create an evidence base to support improved dialogue between those parents and service providers. Seventy family members participated in the focus groups in nine locations across Ireland, of which 44 took part in training workshops for co-researchers. After the workshops 10 family members expressed continued interest in being co-researchers. The authors found that a participatory research approach has considerable potential to contribute to improved understanding of the realities of family life with an adult with intellectual disabilities, particularly if plans to create a dialogue with service providers and to build sustainable networks of parents are included in the project.
Making research live!
- Author:
- HOPKINS Rob
- Journal article citation:
- British Journal of Learning Disabilities, 37(4), December 2009, pp.330-331.
- Publisher:
- Wiley
Clare Inclusive Research Group (C.I.R.G.) started in March 2008 with the appointment of a Research and Communications Officer for the Clare region of Brothers of Charity, Ireland, which is the largest provider of intellectual disability support in the Republic of Ireland. Over its short life the C.I.R.G. has identified relationship, holiday break, and personal social histories as possible research topics, and produced dramatisations, in play form, of relationships. This brief paper outlines some of the work the group has accomplished with respect to relationships.
Inclusive research: making a difference to policy and legislation
- Authors:
- JOHNSON Kelley, MINOGUE Gerard, HOPKLINS Rob
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.76-84.
- Publisher:
- Wiley
While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. This paper explores the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. (Publisher abstract)