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Journal article

Conceptualizing inclusive research with people with intellectual disability

Authors:
BIGBY Christine, FRAWLEY Patsie, RAMCHARAN Paul
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.3-12.
Publisher:
Wiley-Blackwell

A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research with people with intellectual disability and identify the issues associated with ways of approaching it. Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. (Edited publisher abstract)

Journal article

Why are conferences "Sometimes about us, without us"?

Authors:
FRAWLEY Patsie, BIGBY Christine, FORSYTH Heather
Journal article citation:
Journal of Intellectual and Developmental Disability, 31(4), December 2006, pp.249-251.
Publisher:
Informa Healthcare

In this article the authors identify a number of issues, and make suggestions, of how to make conferences about people with learning disabilities to be more accessible to people with learning disabilities. The article is based on their involvement with the Australasian Society for the Study of Intellectual Disability (ASSID) National Conferences.

Journal article

Shifting responsibilities: the patterns of formal service use by older people with intellectual disability in Victoria

Author:
BIGBY Christine
Journal article citation:
Journal of Intellectual and Developmental Disability, 23(3), September 1998, pp.229-243.
Publisher:
Informa Healthcare

As adults with intellectual disability age and inevitably lose support provided by parents, many will become more reliant on formal services. Potentially they can utilise both the aged care and the disability service systems, although neither have explicit policies in relation to this group. This qualitative study in Australia examined the patterns of service use by older people with intellectual disability.

Journal article

Critical realism in social work research: examining participation of people with intellectual disability

Authors:
CRAIG Diane, BIGBY Christine
Journal article citation:
Australian Social Work, 68(3), 2015, pp.309-323.
Publisher:
Taylor and Francis

Critical realism has not been taken up readily within social work research and this may be due to the difficulty of the language and lack of practice examples of its applicability. This paper outlines the basic precepts of critical realism, the implications of these for methodology, and then offers a practical example of its application to social work research in the area of intellectual disability using some of the techniques of more familiar qualitative research methodologies. In response to the increased influence of poststructuralist ideas within social work along with the somewhat contradictory call for evidence-based practice, this paper suggests critical realism as a way of developing empirically based knowledge about the effects of interventions while at the same time accounting for the complexity involved in social work practice. (Publisher abstract)

Journal article

Social inclusion and people with intellectual disability and challenging behaviour: a systematic review

Author:
BIGBY Christine
Journal article citation:
Journal of Intellectual and Developmental Disability, 37(4), December 2012, pp.360-374.
Publisher:
Informa Healthcare

Noting that the high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour, this systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the literature. It also aimed to explore the evidence about the extent of social inclusion of this group. 14 papers reporting community inclusion outcomes for people with challenging behaviour were identified through database searches, and thematic analysis was used to synthesise and interpret the findings. The article includes a table summarising the key features of the studies included in the review. It reports that the analysis found that social inclusion had been poorly defined and measured, and that the little research that had occurred in respect of people with challenging behaviour had demonstrated their potential to be socially included. The author discusses the implications of the findings, with particular reference to practice in Australia.

Journal article

Competencies of front-line managers in supported accommodation: issues for practice and future research

Authors:
CLEMENT Tim, BIGBY Christine
Journal article citation:
Journal of Intellectual and Developmental Disability, 37(2), June 2012, pp.131-140.
Publisher:
Informa Healthcare

The Department of Human Services in Victoria, Australia, manages over 500 group homes, including supported accommodation for people with intellectual disability. As part of a larger research project investigating outcomes in these group homes, this project used a list of 142 competencies for house supervisors or front-line managers in group homes (which had been identified in a research study in Minnesota) as a basis for reviewing what should be expected of the equivalent position in Victoria. The competency statements, adapted and reworded to reflect the local context and terminology, were used as the foundation for semi-structured interviews with a sample of 16 highly performing house supervisors and 5 senior managers which explored their perceptions about their roles. The article describes the analysis of the transcribed interviews, with examples from the interviews, and discusses the emergent findings. It highlights the importance of house supervisors' "orientations" (passion and dedication, stamina and flexibility, calmness, tolerance or liking for a degree of freedom, and perceptions of work-life balance).

Journal article

Encounter as a dimension of social inclusion for people with intellectual disability: beyond and between community presence and participation

Authors:
BIGBY Christine, WIESEL Ilan
Journal article citation:
Journal of Intellectual and Developmental Disability, 36(4), December 2011, pp.263-267.
Publisher:
Informa Healthcare

In this article, the authors argue that people with intellectual disability are among the most disadvantaged and socially excluded in Australian society and that although they have become more present in society, most are not yet part of communities and there has been limited progress on social inclusion. The article discusses the concept of encounter, an innovative concept from urban studies used to describe and plan for interactions between strangers in cities. It notes that exchanges between neighbours, consumers, shopkeepers and strangers are examples of a range of encounters central to life in the city, and that convivial encounters, where strangers engage in a shared activity with a common purpose or intent, may be a potential tool to promote social inclusion for people with intellectual disability. It suggests that local governments and community organisations should think creatively about design and use of local space and facilities such as libraries or community centres that would facilitate encounters, and argues that understanding how people with intellectual disability experience encounters may assist evaluation of their social inclusion or exclusion.

Journal article

Reflections on doing inclusive research in the “Making Life Good in the Community” study

Authors:
BIGBY Christine, FRAWLEY Patsie
Journal article citation:
Journal of Intellectual and Developmental Disability, 35(2), June 2010, pp.53-61.
Publisher:
Informa Healthcare

The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. This study used action research to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. The co-researcher with intellectual disability was employed to be involved in the investigation of ‘homeliness’ in the ‘Making Life Good in the Community’ study. This paper describes the process of supporting the co-researcher rather than the findings of the research. The paper concludes that accepting the co-researcher's strengths and designing support on the job rather than teaching them to ‘pass’ before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Journal article

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: considerations for service development

Authors:
BIGBY Christine, OZANNE Elizabeth
Journal article citation:
Australian Social Work, 57(3), September 2004, pp.273-287.
Publisher:
Taylor and Francis

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programmes for older carers occupied a unique place within the service system. Discusses a study that further explored the functions of specialist programs for this group through a comparison with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.

Journal article

Parental Substitutes? The role of siblings in the lives of older people with intellectual disability

Author:
BIGBY Christine
Journal article citation:
Journal of Gerontological Social Work, 29(1), 1998, pp.3-21.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA

This Australian study examined the roles that siblings played in the lives of older people with intellectual disability and factors affecting this. Nearly half the sample had a sibling who acted as their primary carer after the death of the parents. However, in most cases this was not a permanent arrangement. In the long term a majority of older people did have a sibling who took responsibility for their well-being and played strong advocacy, mediator and supervisory roles. Fulfilment of such roles was associated with a lifelong close relationship between siblings.

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