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A process of decision-making support: exploring supported decision-making practice in Canada
- Authors:
- BROWNING Michelle, BIGBY Christine, DOUGLAS Jacinta
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(2), 2021, pp.138-149.
- Publisher:
- Taylor and Francis
Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters. Results: A common process of decision-making support was discovered, involving dynamic interaction between the person’s will and preferences and supporters’ responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision. Conclusion: The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice. (Edited publisher abstract)
Dimensions of group home culture as predictors of quality of life outcomes
- Authors:
- HUMPHREYS Lincoln, BIGBY Christine, IACONO Teresa
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1284-1295.
- Publisher:
- Wiley
Background: Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes. Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL‐dependent variables. Results: Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents’ engagement in activities. Supporting Well‐Being significantly predicted residents’ community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making. Conclusions: The findings suggest that strategies to improve Effective Team Leadership and Supporting Well‐Being dimensions of culture may contribute to enhancing certain QOL outcomes. (Edited publisher abstract)
Providing support for decision making to adults with intellectual disability: perspectives of family members and workers in disability support services
- Authors:
- BIGBY Christine, WHITESIDE Mary, DOUGLAS Jacinta
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 44(4), 2019, pp.396-409.
- Publisher:
- Taylor and Francis
Background: Supporting people with intellectual disability to make decisions is an important issue for policy implementation yet there is little evidence about the practice of providing support. Method: This study aimed to understand the experiences of family members and disability support workers in providing support to adults with intellectual disability in Victoria, Australia. Twenty-three people drawn from these two groups participated in individual or focus group interviews. Results: Three major themes emerged from inductive thematic analysis: their ideas about decision support, approaches to support, and challenges they faced. Overall these revolved around juggling rights, practicalities, and risks. Conclusions: This study identified some of the challenges and practical strategies for providing decision support that can be used to inform practice and capacity building resources for supporters. (Publisher abstract)
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:
- Taylor and Francis
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).
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:
- Taylor and Francis
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.
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.
Creating opportunities for convivial encounters for people with intellectual disabilities: “It looks like an accident”
- Authors:
- BIGBY Christine, ANDERSON Sian
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(1), 2021, pp.45-57.
- Publisher:
- Taylor and Francis
Background: “Convivial encounter” provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for such encounters. Methods: A case study design used mixed methods to collect data from two disability organisations about convivial encounters the people they supported experienced and staff practices that created these. Results: Most commonly convivial encounters created involved repeated moments of shared activity through which people became known by name by others without disabilities. Eight approaches and five processes were used to create these opportunities for encounter. Conclusions: The study provides a blueprint for scaling up or creating interventions to create opportunities for convivial encounters, and opens lines of enquiry about staff competences needed and parameters for costing this type of intervention. (Edited publisher abstract)
Quality of practice in supported accommodation services for people with intellectual disabilities: what matters at the organisational level
- Authors:
- BIGBY Christine, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(3), 2020, pp.290-302.
- Publisher:
- Taylor and Francis
Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories: senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice; understood Active Support; and strongly supported practice leadership. In these organisations practice leadership was structured close to everyday service delivery, and as part of frontline management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures. (Edited publisher abstract)
Being a valuable contributor on the frontline: the self‐perception of staff in group homes for people with intellectual disability
- Authors:
- QUILLIAM Claire, BIGBY Christine, DOUGLAS Jacinta
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(3), 2018, pp.395-404.
- Publisher:
- Wiley
Background: Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self‐perception of frontline staff about their role in group homes for people with intellectual disability. Method: Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants’ self‐perception. Results: Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Conclusions: Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue. (Edited publisher abstract)
Conundrums of supported living: the experiences of people with intellectual disability
- Authors:
- BIGBY Christine, BOULD Emma, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 42(4), 2017, pp.309-319.
- Publisher:
- Taylor and Francis
Background: Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method: Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results: Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions: If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships. (Publisher abstract)