Search

Quality of life (QoL) is an important outcome in aged care, but self-report is not always possible due to the high prevalence of cognitive impairment in older aged care residents. This study aims to assess the impact of family member proxy perspective (proxy-proxy or proxy-person) on interrater agreement with resident self-report by different cognition levels. The influence of proxy perspective and cognition level is a significant gap in the extant literature which this study seeks to address. A cross-sectional study was undertaken with residents classified into cognition subgroups according to the Mini Mental State Examination. Residents completed the self-report EQ-5D-5L, a well-established generic measure of health-related quality of life (HRQoL). Family member proxies completed EQ-5D-5L proxy version 1 (proxy-proxy perspective, where the proxy responds based on their own opinions) and proxy version 2 (proxy-person perspective, where the proxy responds as they believe the person would). Interrater agreement was assessed using the concordance correlation coefficient (CCC) for utility scores and the weighted kappa for dimension-level responses. Sixty-three residents (n = 22 no cognitive impairment, n = 27 mild impairment, and n = 14 moderate impairment) and proxies participated. EQ-5D-5L utility scores were lower for proxies compared with residents (self-report = 0.522, proxy-proxy = 0.299, and proxy-person = 0.408). Interrater agreement with self-report was higher for proxy-person (CCC = 0.691) than for proxy-proxy (CCC = 0.609). Agreement at the dimension level was higher for more easily observable dimensions, such as mobility, compared to less observable dimensions, such as anxiety/depression. Resident self-reported and proxy family member-reported HRQoL assessments, using the EQ-5D-5L, are different but may be more closely aligned when the proxy is specifically guided to respond from the person’s perspective. Further research is needed to address the impact of divergences in self-report and proxy-report ratings of HRQoL for quality assessment and economic evaluation in aged care.

Background: Local governments play an important role in supporting people with intellectual disability to feel included in their local communities and local-level inclusion is an increasing priority for councils and local authorities in many countries. However, people with intellectual disability themselves have had little involvement in setting the priorities for initiatives and activities in their local communities. In the project, we wanted to know what kinds of initiatives were being implemented and what people with intellectual disability felt was important about these activities in their local communities. In this paper, we explore how the involvement of people with intellectual disability has shaped the outcomes of the review and implications for research and practice. Methods: We completed a review of local-level inclusion-building initiatives. We translated the results into accessible formats and our inclusive research team used these to involve six people with intellectual disability in New South Wales, Australia, in exploring their priorities around kinds of activities, quality and depth of inclusion in their local communities. Findings: The data showed that people wanted to share their deep, rich insights and questions about the things that drive inclusion and exclusion—not only their views about the effectiveness of particular kinds of activities. Conclusions: Implications for future policy and practice are that consultation should not be framed narrowly, but invite people with intellectual disability into conversation about change-making at community and societal levels, as well as seeking their views on specific initiatives and activities. This opens up new opportunities to respond to the priorities of people with intellectual disability in local community-building.

BACKGROUND Microenterprises are very small businesses requiring little capital and can be an employment pathway for people with intellectual disabilities. This systematic review aims to identify the facilitators, barriers and outcomes from microenterprise. METHOD Web of Science, Scopus, EconLit, PsycINFO and ProQuest were searched to identify peer-reviewed studies on microenterprises owned by people with intellectual disability published up to and including 1 October 2019. RESULTS A total of 1080 papers were independently screened by two reviewers. Six papers met the inclusion criteria. Barriers included lack of access to business expertise and resources, and the tension between growing microenterprises and maintaining eligibility for welfare payments. Formal and informal supports were key facilitators. Outcomes experienced included additional income, skills development, increased confidence and engagement in meaningful activities. CONCLUSION Additional research is required to develop an evidence base which may support investment in this employment pathway, making microenterprise more accessible to people with intellectual disabilities.

This study explored the experiences of people with acquired brain injury and their families during the COVID-19 pandemic, focusing on how they maintained their communities and sense of belonging, the strategies they found helpful, and advice they have for improving service provision and community connectedness.Semi structured interviews with pictorial mapping were conducted with ten adults with ABI and six of their family members. Participants responded to recruitment information circulated by a state-wide ABI peer support network in South Australia.Four primary themes were identified from the findings: (1) disruptions to routine; (2) social isolation; (3) using technology; and (4) strategies for staying safe and keeping well. Results are discussed using a social and urban geography lens and a conceptual framework of belonging to explore the experiences of people with ABI and their communities.The study reinforces the role of robust peer/support networks to stay connected, stay well and support others. Government, health services and community groups must provide clear and accessible information and supports, and regularly reach out to ensure the safety and wellbeing of people with ABI and their families during the pandemic.IMPLICATIONS FOR REHABILITATIONPeople with acquired brain injury and their families experienced increased challenges to maintaining contact with their communities during the COVID-19 pandemic.The main challenges were disruptions to routine, social isolation, and use of technology for health, therapy and social contact.Strategies to support people with ABI to maintain connections, stay engaged, and access technology and information to stay safe and well during lock-down are presented.

The inclusion of people with intellectual disability in cultural and civic activities is an important point for discussion, particularly in the context of supporting the social sustainability of our local communities and cities. In line with a human rights approach to disability and inclusion, local governments and community organisations are poised to play a pivotal role in the inclusion of people with intellectual disability. Using PRISMA-P guidelines, we undertook a scoping review of local inclusion building initiatives in Australia and comparative international countries that helped connect people with intellectual disability with their local council and community. We also examined what role people with intellectual disability played in the assessment and evaluation of these resources in the literature. We analysed the initiative outcomes discussed in the included papers across the five themes outlined in framework for Building Inclusive Cities (Broadband & Keiran 2019) and through the lens of Simplican et al.’s (2015) framework for community participation. Participation-building initiatives that were investigated included more general community groups, specific community groups (Men's Shed, Unified Sports teams), dog walking, peer advocacy, community conversation and community mentorship. One out of the 11 studies reported an inclusive research methodology (Power, Bartlett, & Hall, 2016). Analysis of the results offers opportunities to consider the ways in which the personal preferences of people with intellectual disability can be interwoven with structure and levels of participation to improve social inclusion in their local communities.