The strength of Frontline Practice Leadership in Australian supported accommodation services: Challenges confronting service providers.

BACKGROUND: The strength of practice leadership predicts the quality of Active Support but it can be compromised by other demands on frontline managers. The study aimed to identify and understand differences in practice leadership over time and between organisations. METHOD: Data collected in 2022 in 96 services from 11 organisations using the Observed Measure of Practice Leadership were compared to similar data from 2013 and 2018. Qualitative fieldnotes were analysed thematically. FINDINGS: Practice leadership scores increased significantly between 2013 and 2018 but declined significantly between 2018 and 2022. Scores were significantly higher in organisations that had implemented Active Support since 2013 compared to later adopters. Higher scoring organisations had structures that supported frontline managers with practice leadership and that countered increasing administrative demands. CONCLUSIONS: Establishment of support structures for practice leadership by organisations warrants further investigation together with the relative importance of each task of practice leadership.

Organisational culture in 'better' group homes for adults with intellectual and developmental disabilities in England: A qualitative study.

BACKGROUND: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. METHOD: Participant observations and semi-structured interviews with staff were carried out in two group homes. Field-notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re-examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five-point Likert scale for each of the dimensions. RESULTS: The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted. CONCLUSION: The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities.

More-than-care: People with intellectual disability and emerging vulnerability during pandemic lockdown.

This paper offers more-than-care as a framework for analysing how vulnerability emerges in the lives of people with intellectual disability beyond relations of care. More-than-care detaches vulnerability from the identity category of disability. It provides a framework for conceptualising vulnerability in an unequal, neoliberalising, and ableist world and sheds new light on the ever-evolving constitution of vulnerability and disability. This intervention breaks with conceptions of vulnerability centred on care needs that leave other circumstances that inform vulnerabilities unexamined. Importantly, the framework shifts responsibility for managing vulnerabilities away from carers alone. The more-than-care framework is grounded in socio-material conceptualisations of disability and advances a tripartite framing of vulnerability. First, it grounds studies of vulnerability in histories of spatially uneven investment in infrastructure and resources that shape how care and other practices can assemble to produce, challenge, and manage vulnerability. Second, it recalibrates dominant conceptions of the temporality of vulnerability to ensure sensitivity to the unpredictability of emergent vulnerabilities. Third, in following a socio-material conceptualisation of intellectual disability, more-than-care expands discussions about agency in the context of vulnerability. These concepts are empirically examined through an analysis of how vulnerability emerges in the lives of four self-advocates with intellectual disability during Melbourne's first and second COVID-19 lockdowns. The analysis shows that vulnerability was highly dynamic and unpredictable as it emerged in complex socio-material assemblages that included care arrangements, embodied experiences and agencies, and past instances of neglect and exploitation.

Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature.

BACKGROUND: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender diverse adults with intellectual disability experience exclusion within disability services. OBJECTIVE: This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services. SEARCH METHOD: A systematic search was conducted of peer-reviewed research published between January 2014 and April 2019. Five databases returned 66 articles plus three from hand searches. APPRAISAL AND SYNTHESIS: Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles. RESULTS: Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services. CONCLUSIONS: Research into interventions that support the inclusion of this cohort in disability support services is needed.

What is good service quality? Day service staff's perspectives about what it looks like and how it should be monitored.

BACKGROUND: Australian disability services must comply with quality standards defined by federal government. Standards are abstract, focus on paperwork and rarely describe what good service quality looks like in practice. This research explored frontline day service staff's perceptions of good service quality to identify ways that it may be better monitored. METHODS: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 9 frontline staff from 3-day services. Interviews were recorded, transcribed and analysed for themes using constant comparison and line-by-line coding. RESULTS: Five categories of good practice were identified: collaborative hands-on leadership, well-planned services, respect for people with intellectual disabilities and their carers, a culture of continuous improvement and professionalization of the support worker role. CONCLUSIONS: Results align with research undertaken in accommodation services for people with intellectual disabilities, suggesting commonalities in frontline staff's perceptions of quality in both day and accommodation services.

Dimensions of group home culture as predictors of quality of life outcomes.

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.

Development and psychometric evaluation of the Group Home Culture Scale.

BACKGROUND: Organizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under-researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure. METHOD: The Group Home Culture Scale (GHCS) was developed using a theory-driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front-line staff were used for exploratory factor analysis. RESULTS: The content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92. CONCLUSIONS: The GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL.

Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model.

BACKGROUND: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support. METHODS: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM). RESULTS: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support. CONCLUSIONS: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership.

An exploration of communication within active support for adults with high and low support needs.

BACKGROUND: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. METHODS: Data from 182 service users, 20-81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. RESULTS: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). CONCLUSIONS: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.

The state of health services partnering with consumers: evidence from an online survey of Australian health services.

BACKGROUND: Involving consumers in producing health services is mandated in many countries. Evidence indicates consumer partnerships lead to improved service design, quality and innovation. Involving participants from minority groups is crucial because poor understanding of distinctive needs affects individuals' service experiences and outcomes. Few studies consider service compliance with consumer partnering requirements or inclusion of minority group participants. METHODS: An online survey structured by domains of the Australian National Safety and Quality in Health Service Standards (NSQHS, 2013), was conducted. Questions covered consumer partnering in service planning, management and evaluation plus patient care design and inclusion of consumers from minority groups. Approximately 1200 Australian hospital and day surgery services were identified and 447 individual email addresses were identified for staff leading consumer partnerships. Quantitative data were analysed using SPSS. Qualitative responses, managed in NVivo, were analysed thematically. Frequencies were produced to indicate common activities and range of activities within question domains. RESULTS: Comprehensive responses were received from 115 services (25.7%), including metropolitan and non-metropolitan, private and public service settings. Most respondents (95.6%) "partnered with consumers to develop or provide feedback on patient information". Regarding inclusion of participants from minority groups, respondents were least likely to specifically include those from socially disadvantaged backgrounds (23.6%). Public health services were more likely than private services to engage with consumers. CONCLUSIONS: The survey is the first to include responses about consumer partnering from across Australia. While many respondents partner with consumers, it is clear that more easily-organised activity such as involvement in existing committees or commenting on patient information occurs more commonly than involvement in strategy or governance. This raises questions over whether strategic-level involvement is too difficult or unrealistic; or whether services simply lack tools. Minority views may be missed where there is a lack of specific action to include diversity. Future work might address why services choose the activities we found and probe emerging opportunities, such as using social media or online engagement.

Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?

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.

How frontline staff manage paperwork in group homes for people with intellectual disability: Implications for practice.

BACKGROUND: Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications. METHOD: Constructivist grounded theory methodology guided the research. Data collection included semi-structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork. RESULTS: Staff followed organizational paperwork rules when they aligned with their resident-focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion. CONCLUSIONS: Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development.

Being a valuable contributor on the frontline: The self-perception of staff in group homes for people with intellectual disability.

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.

Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review.

BACKGROUND: Little progress has been made towards community participation of people with intellectual disability despite it being a policy aim since the 1980s. We aimed to identify the features of programmes designed to support community participation. METHOD: A scoping review was conducted of peer-reviewed literature between 2000 and 2015, about interventions to support community participation for adults with intellectual disability. RESULTS: A small body of evidence relates to the design and effectiveness of interventions to enhance community participation. Seventeen studies reported programmes reflecting three conceptualizations of community participation (as social relationships, as convivial encounter and as belonging) that used strategies such as active mentoring, facilitative support worker practice and arts-based programmes. CONCLUSIONS: Studies showed the diverse and person-centred nature of community participation and demonstrated the need for larger-scale studies of promising interventions that include details of costs, and strategies to guide implementation of policies to support community participation.

Self-Advocacy as a Means to Positive Identities for People with Intellectual Disability: 'We Just Help Them, Be Them Really'.

BACKGROUND: Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability. AIM: The study explored the effects of membership of independent self-advocacy groups on the social identity of people with intellectual disability. METHOD: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 25 members of six self-advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK. RESULTS: Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business-like person, a self-advocate and an independent person were opened up. Self-advocacy is an important means of furthering social inclusion of people with intellectual disability.

"I won't be around forever": Understanding the decision-making experiences of adults with severe TBI and their parents.

There is growing recognition of the right of all individuals, including those with cognitive impairment, to make decisions about their own lives. However, little is known about how the process of decision making is experienced after severe traumatic brain injury (TBI). This study used constructivist grounded theory to explore processes used by adults with severe TBI and their parents in making decisions about life after injury. Data consisted of 18 individual, in-depth interviews with four dyads (consisting of an individual with severe TBI and his or her parent). The overlying construct emerging from the data was a process of reimagining the future, which influenced how participants approached and participated in making decisions. In line with this construct, two central themes described processes of joint decision making within parent-adult child relationships after severe TBI over time: (1) making decisions with parental support, and (2) reducing parental involvement. These findings emphasise the complexity of supporting decision making after injury, and illustrate that both parents and their adult children with TBI use explicit and implicit strategies to facilitate increased participation in making decisions. This study also underscores the need for brain injury clinicians to consider the needs of parents who find themselves in this role.

'The biggest thing is trying to live for two people': Spousal experiences of supporting decision-making participation for partners with TBI.

PRIMARY OBJECTIVE: To understand how the spouses of individuals with severe TBI experience the process of supporting their partners with decision-making. DESIGN: This study adopted a constructivist grounded theory approach, with data consisting of in-depth interviews conducted with spouses over a 12-month period. Data were analysed through an iterative process of open and focused coding, identification of emergent categories and exploration of relationships between categories. PARTICIPANTS: Participants were four spouses of individuals with severe TBI (with moderate-severe disability). Spouses had shared committed relationships (marriage or domestic partnerships) for at least 4 years at initial interview. Three spouses were in relationships that had commenced following injury. MAIN OUTCOME AND RESULTS: Two main themes emerged from the data. The first identified the saliency of the relational space in which decision-making took place. The second revealed the complex nature of decision-making within the spousal relationship. CONCLUSIONS: Spouses experience decision-making as a complex multi-stage process underpinned by a number of relational factors. Increased understanding of this process can guide health professionals in their provision of support for couples in exploring decision-making participation after injury.

Mediating Community Participation: Practice of Support Workers in Initiating, Facilitating or Disrupting Encounters between People with and without Intellectual Disability.

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters.

'We Just Call Them People': Positive Regard as a Dimension of Culture in Group Homes for People with Severe Intellectual Disability.

BACKGROUND: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively. METHOD: Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review. RESULTS: Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities. CONCLUSIONS: This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.

A systematic review of hospital experiences of people with intellectual disability.

BACKGROUND: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps. METHOD: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought. RESULTS: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals' fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes. CONCLUSIONS: Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors.