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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)
Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: bringing research, politics and policy together
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(4), 2020, pp.309-319.
- Publisher:
- Taylor and Francis
Background: Dedifferentiated policy treats adults with intellectual disabilities as part of the larger group of people with disabilities. The implications of the dedifferentiated National Disability Insurance Scheme (NDIS) for adults with intellectual disabilities are explored. Methods: Analysis of peer reviewed and grey literature between 2014 and 2020 about design of the NDIS and outcomes. Results: Many participants experienced problems with NDIS implementation. Outcomes for adults with intellectual disabilities compared poorly to other groups. They were disadvantaged by standardised planning processes relying on self-expressed needs and omission of supported decision making. As the NDIS matures, it is becoming more differentiated but issues relevant to adults with intellectual disability remain largely invisible. Conclusions: Further shifts towards standardised planning and functional assessment may be disadvantageous for adults with intellectual disabilities for whom support needs are dependent on social and contextual factors, and exercise of choice on support for decision making. (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)
Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference?
- Authors:
- BIGBY Christine, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(2), 2018, pp.e182-e200.
- Publisher:
- Wiley
Background: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes. Methods: A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters. Results: Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings. Conclusions: The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains. (Publisher abstract)
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)
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)
Predicting good Active Support for people with intellectual disabilities in supported accommodation services: key messages for providers, consumers and regulators
- Authors:
- BIGBY Christine, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(3), 2020, pp.279-289.
- Publisher:
- Taylor and Francis
Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services. (Publisher abstract)
Staff perspectives on paperwork in group homes for people with intellectual disability
- Authors:
- QUILLIAM Claire, BIGBY Christine, DOUGLAS Jacinta
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(3), 2018, pp.264-273.
- Publisher:
- Taylor and Francis
Background: Paperwork can transform organisational aims into action in group homes, but it can also be problematic for staff. The aim of this study was to explore frontline staff perspectives on paperwork in group homes for people with intellectual disability. Methods: Constructivist grounded theory methodology guided the study. Data were collected from 29 participants through semi-structured interviews, participant observations and journaling. Coding and sorting methods were used to analyse participants’ perspectives. Results: Staff have nuanced paperwork perspectives. They described and evaluated paperwork in terms of its value and fit with resident-focused practice. They identified gaps in paperwork and reimagined its design and use. Conclusions: Frontline staffs’ reflection suggests some paperwork hinders them from supporting residents well. This suggests organisations could consult better with staff to design paperwork that has a goodness of fit to their practice. Further research could explore how staff manage the limiting characteristics of paperwork. (Edited publisher abstract)