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Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary. A scoping review of qualitative studies (2012–2022) was undertaken to identify which perspectives are present in research on adults with intellectual disabilities and future planning, and to examine key aspects of their future planning experience. The perspectives of parents and siblings predominate in the research. Those of adults with intellectual disabilities and service providers are underrepresented. The views of adults with intellectual disabilities need to be elevated in future planning and they need to be meaningfully involved in planning processes. Focus on the experiences of service providers is likewise needed. [ABSTRACT FROM AUTHOR]

Background: Although the Family Quality of Life Survey--2006 (FQOLS-2006) is being used in research, there is little evidence to support its hypothesised domain structure. The purpose of this study was to test the domain structure of the survey using confirmatory factor analysis. Method: Samples from Australia, Canada, Nigeria and the USA were analysed using structural equation modelling. The data from Australia, Canada and the USA were combined on the assumption that these countries are similar, at least to some degree, in economic development, language and culture. The Nigerian data were analysed on its own. The analysis was undertaken in two phases. First, the hypothesis that each of nine domains of the FQOLS-2006 is a unidimensional construct that can reliably measure the dimensions "Importance," "Stability," "Opportunities," "Attainment," "Stability" and "Satisfaction" was tested. Second, the hypothesis that family quality of life (FQoL) is a single latent construct represented by the nine domains measured in the FQOLS-2006 was tested. Results: In the first phase of the analysis, the "Importance" dimension was dropped because of skewness and lack of variance. The "Stability" dimension did not fit well within the individual domain model in both the Nigerian and the combined three countries' data. When "Importance" and "Stability" were excluded, the individual domain models showed good or acceptable fit when error variances of some dimensions were allowed to correlate. In the second phase of the analysis, the overall model, FQoL, represented by the nine domains of the FQOLS-2006 showed good fit in both data sets. Conclusions: The conceptual model of the FQOLS-2006 was supported with some qualifications. Each domain on the survey can be reliably measured by four dimensions "Opportunities," "Initiative," "Attainment" and "Satisfaction." The dimensions of "Importance" and "Stability," however, did not fit. Data reported on these dimensions from past and current studies should be interpreted with caution. The construct of FQoL is also reliably measured by the domains of the FQOLS-2006. Further research into the psychometric properties of the survey, particularly from a cross-cultural perspective, is needed.

Background: Family quality of life (FQOL) is a recent concept in intellectual/developmental disability research. Outcomes for the family are important to the provision of services because families, rather than institutions, are increasingly considered the primary support unit. This article presents Australian findings using the international "Family Quality of Life Survey: Main Caregivers of People with Intellectual or Developmental Disabilities" (FQOLS-2006). Method: Forty-two South Australian main caregivers of people with an intellectual/developmental disability were interviewed using the FQOLS-2006. The FQOL domains assessed were "Health of the Family," "Financial Well-being," "Family Relationships," "Support from Other People," "Support from Disability-Related Services," "Influence of Values, Careers, Leisure and Recreation," and "Community Interaction." Domains were measured in terms of Importance, Opportunities, Attainment, Initiative, Stability and Satisfaction. The FQOLS-2006 asked about the family's practical and emotional "Support from Other People" together, whereas the current study separated the constructs of practical and emotional support. Questions pertaining to FQOL in the past were also added, in order to gain a broader picture of present FQOL. Results: Results indicated that families considered all the FQOL domains to be important. However, "Health," "Family Relationships" and "Financial Well-being" were regarded as slightly more important than "Practical and Emotional Support from Others." The attainment of "Family Relationships," "Health," "Values," and "Leisure and Recreation" were rated as "quite a bit," but "Practical Support from Other People" was only rated as "a little." Families were generally "satisfied" with all FQOL domains, but they were "satisfied" with their "Family Relationships" and they were "neither satisfied or dissatisfied" with their "Financial Well-being." Results also indicated that there was a need to distinguish between the provision of practical and emotional support from others, because the attainment of emotional support was rated at a slightly higher level than practical support. Conclusions: The FQOLS-2006 provided a comprehensive measure of FQOL, which, with some additional modifications, could be used to better inform service provisions and ultimately enhance the quality of life of people with intellectual/developmental disabilities and their families

Background We tested whether social and educational integration combined with training in awareness of disability for secondary school students resulted in more positive, long-lasting attitudes about educational and social inclusion of people with an intellectual disability. Method Attitudes of 259 participants (116 males, 143 females) were assessed by questionnaire. Effects of awareness of disability programs (ADPs) were tested by comparing attitudes of current secondary school students participating in a 3-session or 8-session ADP (n = 67) and past students who had participated in a 10-session ADP 8 years prior to the present study (n = 46), with same-age controls without training (n = 146). Results Students completing 8-session ADPs reported more favourable attitudes than students in the 3-session ADP and peers without training. Past students' attitudes were also highly positive, compared with same-age controls without training. Conclusions ADP programs can promote positive attitudes towards people with an intellectual disability. Such training may have long-term benefits. [ABSTRACT FROM AUTHOR]

Purpose: This paper examines the current state of services and support for children and young people with intellectual disability in Vietnam through the perspectives and experiences of parents and professionals in the education and health systems., Materials and Methods: We undertook 24 semi-structured interviews with parents and professionals from two Vietnamese central provinces to ask about their experiences and support needs. We draw on the networked model of ecological systems to identify contextual factors in the micro-, meso-, exo- and macro-systems., Results: Access to education and healthcare services were found to be limited for children, young people, and families in central Vietnam. Barriers to provision, accessibility and quality of services were identified at multiple intersecting levels and systems. Parents reported high needs for formal services provided by trained professionals as well as information and education for themselves to provide optimum support for their children. For professionals, further training and government investment and oversight are needed to improve access and ensure quality of services., Conclusions: Services and support in education and healthcare for children and young people with intellectual disability and their families remains lacking and needs significant improvement. Further information and support for parents, capacity building for professionals, strengthened disability policies and regulations, and public awareness are required.

Background: COVID-19 influenced education delivery worldwide. The Up the Hill Project (UTHP), a university mentoring program in Australia for people with intellectual disability, transitioned from a face-to-face to online format during 2020., Results: The experience of transitioning online for one semester (12-week period) had positives and challenges associated with it. The UTHP Coordinator reported initial doubts for the online mode and identified the importance of at home support. However, the experience has opened up avenues for future program practices, such as intake processes and increased flexibility. From the participants' perspective, the online experience supported participants to develop new technology skills. However, challenges were that participants needed support, and missed face-to-face contact., Conclusion: Online mentoring in the UTHP had challenges, but has also supported continuation of university programs. Lessons learnt will influence the development of the UTHP in some capacity into the future.

Background: Adults with intellectual disability who attended higher education programs have reported increasing self-determination, developing social skills and forming relationships. However, there is limited evidence about what adults with intellectual disability do after they complete such programs. This study investigated the experiences of adults with intellectual disability after they completed an inclusive higher education university program in Australia., Materials & Methods: This qualitative study used a phenomenological approach. Semi-structured interviews were conducted with adults with intellectual disability who had completed the program (N = 6). Data were thematically analysed and interpreted using Bronfenbrenner's ecological systems theory., Results: Participants developed lasting connections with mentors and staff but not with peers. Some participants accessed more opportunities, returned to study, increased topic-specific knowledge, and developed life skills; however, others faced challenges with transition from the program., Discussion: Findings highlight a need to explore ways to enhance the transition from the program to the wider university environment and/or employment. Suggestions for practice are provided to help inform future development of inclusive higher education programs for adults with intellectual disability., Conclusion: With appropriate support adults with intellectual disability can experience positive post-university outcomes and opportunities; however, limited social interaction with informal supports such as peers, challenges the inclusive model., (© 2022 John Wiley & Sons Ltd.)

Background/aims: The COVID-19 pandemic has highlighted the need for accessible support for children with developmental disabilities. This study explored online literacy instruction with supplementary parent-led shared book reading (SBR) for children with autism., Methods: Twenty-one children with autism (5-12 years) completed a battery of assessments (T1) before being assigned to ability matched Instruction (n = 10) and Control groups (n = 11). Instruction group participants completed 16 h of ABRACADABRA instruction working with a researcher 1:1 online and SBR activities at home with a parent over 8 weeks. All participants were reassessed after the instruction period (T2) and parents of children in the Instruction group were interviewed regarding their views and experiences., Results: Quantitative analyses showed no significant improvements in reading for Instruction group children relative to Control group children. However, each child successfully participated in 16 online instruction sessions and qualitative data revealed that parents were generally positive about the program, with some observing improvements in their child's literacy skills and reading confidence., Conclusions and Implications: While it appears children with autism can participate in online literacy instruction, sixteen hours of online ABRACADABRA instruction with parent-led SBR may not be effective in improving their reading skills. Further research is required to explore whether more intensive and/or extended online instruction may be feasible and effective, and to improve uptake of parent-led book reading activities at home., (Crown Copyright © 2022. Published by Elsevier Ltd. All rights reserved.)

Objective: The objective of this review is to identify, appraise, and synthesize the available qualitative evidence on the lived experiences of adults with intellectual disabilities who identify as lesbian, gay, bisexual, or transgender in mainstream society., Introduction: People with intellectual disabilities who identify with a non-normative sexual orientation and gender identity (eg, lesbian, gay, bisexual, transgender, queer or questioning, intersex, asexual) are dually stigmatized due to the prevailing notion of ableism and heteronormativity within the wider society. This layered stigma can generate further segregation within society, increasing vulnerability in this population and limiting their facilitation of a meaningful and satisfying life. To date, there are no existing systematic reviews that have explored the proposed study., Inclusion Criteria: The review considered qualitative studies that explored adults (aged 18 and over) who have a formal diagnosis of intellectual disability or mental retardation (preceding diagnosis) in conjunction with their lesbian, gay, bisexual, transgender, queer or questioning, intersex, or asexual identity., Methods: The search strategy of eligible papers followed a three-step process. The search strategy aimed to locate published and unpublished studies in English from 1990 onward. The databases within the designated platforms that were searched included CINAHL, MEDLINE, PsycINFO, ScienceDirect, ERIC, ProQuest Dissertations and Theses Global, Scopus, PubMed, REHABDATA Database, Wiley Online Library, Google Scholar, and Google Advanced. The search was conducted in April 2017 and updated in January 2020. Titles and abstracts were screened by two independent reviewers for alignment with the inclusion criteria. Eligible studies underwent critical appraisal by three independent reviewers for methodological quality. Findings were assigned a level of credibility and synthesized using JBI's meta-aggregative method., Results: Following critical appraisal, 15 studies were included in this review. These studies were published between 1995 and 2018. The majority of the studies included in each synthesized finding scored either four or five "yes" responses or two or three "yes" responses on the relevant critical appraisal questions; therefore, the dependability scores were downgraded one level. With reference to the level of credibility, all findings in this systematic review were rated as unequivocal (U). Each synthesized finding was rated as moderate on the ConQual score. Data extracted from these studies resulted in 184 findings, which were then aggregated into 26 categories based on the similarities of meanings to form the eight synthesized findings. The synthesized findings provide a deeper and more comprehensive understanding of the lives of the participants. None of the participants in this review identified as queer or questioning, intersex, or asexual. Therefore, the findings in this review solely report on the lived experiences of participants with intellectual disabilities who identify as lesbian, gay, bisexual, or transgender., Conclusions: The synthesized findings indicated participants experienced a myriad of intersecting issues and multilevel environmental challenges that had a profound and adverse impact on their daily lives and development of a positively evaluated sense of self. Recommendations for policy and practice are provided to initiate further awareness and give precedence to a minority group within society that tends to be under-represented and overlooked., Competing Interests: The authors declare no conflict of interest., (Copyright © 2021 JBI.)

Background: Little is known about how older parent caregivers from culturally and linguistically diverse (CALD) backgrounds experience caring for their family member with intellectual disability into late life., Method: In-depth semi-structured interviews were carried out with N = 19 family caregivers aged 50-91 from ten Italian and four Greek families. The Sociocultural Stress and Coping Model was used as a framework to interpret their experiences., Results: A number of stressors including the need to make sacrifices, physical and emotional demands, uncertain futures and challenges associated with "the system" were identified. While family members play a key role in providing support, changing values around filial responsibility were evident., Discussion: Further attention needs to be given to CALD families to address challenges associated with caring for their family member with intellectual disabilities as they age. This study also challenges assumptions that CALD families prefer to keep caring within the family long-term., (© 2020 John Wiley & Sons Ltd.)

Inclusive post-secondary education (PSE) delivers positive personal, social and academic outcomes. However, there is limited support for students with intellectual disability (ID) to participate in higher education, particularly in Australia. This study investigated the expectations and experiences of students with ID in an inclusive individual support PSE programme. Semi-structured interviews were conducted with students ( n = 4) and peer mentors ( n = 6) at the beginning and end of one academic semester. Participants were asked about inclusive practices, goal attainment, mentoring experiences and skill development. Thematic analysis was used to analyse data. Four major themes and several subthemes were identified: self-determination (e.g. self-confidence), social development (e.g. social networks), intellectual development (e.g. subject knowledge) and inclusive practices. The results emphasized the value of inclusive PSE for students with ID. Recommendations regarding future practices of inclusive PSE for people with ID are provided.

Review Objective/question: The purpose of this systematic review is to identify, appraise and synthesize the best available qualitative evidence on the lived experiences of adults with intellectual disability who identify as lesbian, gay, bisexual, transgender, queer or questioning, intersex or asexual in mainstream society.

Purpose: This study explores the experiences and needs of bereaved family and friends following an epilepsy-related death in Australia., Method: An online survey was used to collect demographic details of the person with epilepsy, epilepsy status, time since the death, satisfaction with service providers at the time of death, follow-up support, perceptions on how well the death was explained, and gaps in support or services., Results: The survey was completed by 101 respondents describing 90 deceased individuals. Mean age at death was 32.1 years, with causes of death including SUDEP, epilepsy, drowning, cardiac arrest, asphyxiation, and motor vehicle accidents. Over half of the respondents indicated that they did not know, prior to the death, people could die of epilepsy. In addition, 38% indicated the death had not been adequately explained to them. Comments revealed services and supports which should be available following a death, and recommendations for existing epilepsy support services which might help to prevent future deaths., Conclusion: Findings highlight the need to improve community understanding and support for those affected by epilepsy and to promote informed risk assessment and communication amongst patients, families and health professionals. People bereaved by epilepsy require both immediate and long-term epilepsy-specific information and support from professionals, informal communities and peer supporters., (Copyright © 2015 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)