Journal of Intellectual & Developmental Disability最新文献

Background: Adults with severe or moderate intellectual disabilities frequently experience traumatic events, placing them at higher risk for trauma-related disorders. Although these events also affect their relatives, their experiences have not been studied.

Method: Thematic analysis was conducted on interviews with eight first-degree relatives of adults with severe or moderate intellectual disabilities who had experienced traumatic events, as identified through a trauma interview.

Results: Four themes emerged: (1) the impact varied, with some relatives developing trauma-related symptoms; (2) characteristics of events in terms of severity and frequency, accompanied by feelings of helplessness, guilt, and inadequacy; (3) coping strategies, including social support, persevering and avoidance; and (4) the link between impact and long-term care for the client, potentially increasing relatives' susceptibility to complaints.

Conclusion: Professionals must be aware of the effects of trauma on relatives of individuals with severe or moderate intellectual disabilities. Further research needs to explore differences among relatives.

Background: People with Down syndrome often face communication barriers, cognitive limitations, and inadequate service responses during hospital clinical encounters, leading to poorer health outcomes. Patient-led recordings, where individuals use their own smart devices to capture clinical encounters, show promise in helping to address these issues. However, their use in this population remains unexplored.

Method: Semi-structured interviews were conducted with 12 adults with Down syndrome and 12 nominated support people. Interviews were transcribed and analysed using a critical realist approach to thematic analysis.

Results: Participants identified several benefits of patient-led recordings, including improved communication, enhanced comprehension, supported decision-making, increased empowerment, and positive emotional impacts. However, barriers such as awareness, accessibility, digital literacy, consent, and confidentiality concerns were noted.

Conclusion: Patient-led recordings could improve healthcare experiences for some people with Down syndrome, but addressing key barriers is necessary for successful implementation.

Background: Teachers' beliefs are conducive to inclusion at school. Based on the intergroup contact theory, this study examined short  - and long-term effects of an innovative contact intervention on pre-service teachers' beliefs and inclusive practices.

Method: Using a pre-post-follow-up design, data were collected from N = 356 pre-service teachers in university teacher training, divided into an intervention group attending a seminar session with people with intellectual disabilities as lecturers and a comparison group following the standard curriculum.

Results: Structural equation modelling indicated that the intervention influenced pre-service teachers' beliefs (attitudes, modern prejudices, self-efficacy) in the short term; there was no evidence of long-term effects, such as on inclusive practices.

Conclusion: Incorporating interactive contact with people with disabilities into university teacher training could be an additional contribution to preparing teachers for inclusive education. An appropriate target for future research is to explore the mechanisms underlying changes in inclusion-related beliefs.

Background: During infection outbreaks people with intellectual disability face numerous challenges in accessing appropriate health information and guidance. This research sought to understand how information about infectious diseases was shared in Australian group homes, and what helps or hinders information access.

Method: Semi-structured interviews were conducted with six residents and eight support workers during the COVID-19 pandemic (2021-2022), and observational tours of two residential group homes were also completed. Interviews and observations underwent thematic and content analysis.

Results: Findings centred around five key themes: (i) the COVID-19 context; (ii) living in an information soup; (iii) seeking information from trusted sources; (iv) sharing information with others; and (v) the value of tailored communication support.

Conclusion: Our study found that information sharing about infectious diseases in disability group homes was multidirectional and drew on both formal and informal sources. Inclusive information sharing in these settings demands a coordinated and tailored approach.

Background: Improved life expectancy, among individuals with intellectual disability, highlights unique health, social, and emotional challenges in ageing, including premature ageing, comorbidities, and access barriers to accessing care. This review explores whether current systems adequately address the holistic needs of ageing individuals with intellectual disability, emphasising the importance of person-centred support.

Method: A qualitative evidence synthesis was undertaken using thematic synthesis to identify and analyse patterns across studies. A systematic search of eight databases was conducted, and 15 qualitative studies, published between 2010 and 2023, were included.

Results: Five key themes were identified: challenges in managing physical health declines, reduction in personal autonomy and control, increased social isolation, uncertainty about future care, and age-related stigma, and discrimination.

Conclusion: This review underscores the importance of a holistic, person-centred approach to supporting ageing individuals with intellectual disability. Addressing health and psychosocial needs, and advocating for inclusive service planning remains essential.

Background: Few studies have examined care providers' expectations for children with autism spectrum disorders or intellectual disability in low-and-middle-income countries. We used data from a qualitative study to inform a quantitative investigation of parents' and service providers' expectations for children with autism or intellectual disability in Ghana and Zambia.

Method: 207 participants completed country-specific surveys examining expectations for children with autism or intellectual disability. Participants rated each expectation statement on two criteria: (i) the perceived importance and (ii) the perceived likelihood of attainment. We investigated differences using multivariate analysis of variance strategies.

Results: There were significant differences between parents and service providers in Ghana on the perceived importance of independence, and the likelihood of children with autism or intellectual disability attaining independence, quality education, and community acceptance and inclusion. No significant differences emerged in Zambia.

Conclusion: The findings and research, policy, and practice implications are discussed.

Background: This study explored human rights concerns of advocates and service providers during the COVID-19 pandemic in residential support services in Victoria, Australia.

Method: A desk-top review informed the content of individual interviews and focus groups with Victorian disability service providers and key advocacy focused agencies with roles in complaint, community visitor, guardianship, or advocacy.

Results: Concerns identified by both stakeholder groups included restricted access to choice, control, and decision making, barriers to communication and self-determination, reduced safeguarding, and a lack of accessible health information. Enablers included increased face to face contact with consistent support staff, and opportunities for increased engagement with friends and family online. Reductions in behaviours of concern and associated restrictive interventions were reported.

Conclusion: Prevention of human rights violations in the context of lockdowns due to disease outbreaks or other disasters can and should be a priority for public health policy in Australia and internationally.

Background: This study introduced a novel approach to designing accessible games for children with cognitive disabilities by directly incorporating clinicians' expertise, addressing a critical gap in evidence-based digital interventions.

Method: A qualitative study was conducted with 25 children in 15 occupational clinics, with varying levels of cognitive functioning. Interviews examined children's play needs to inform the development of a digital library of accessible games that were implemented in practice. A satisfaction questionnaire was distributed to participants.

Results: Useful insights for designing accessible games for children with cognitive disabilities to support their development were obtained. Accessible games allowed children with cognitive disabilities to perform all stages of play and develop social skills, meeting their unique needs.

Conclusion: Accessible game design enhances play abilities by offering inclusive opportunities that promote understanding, participation, and skill development. Future research should examine the long-term impact of digital interventions and explore integration within family contexts to maximise therapeutic outcomes beyond clinical settings.

Background: Borderline intellectual functioning (BIF) involves cognitive and adaptive limitations affecting behaviour and quality of life (QoL). This study compared self- and parent-reported behavioural difficulties and QoL in Thai children with BIF and identified associated factors.

Method: Fifty children aged 8-15 years with BIF and their parents completed the Strengths and Difficulties Questionnaire and Pediatric Quality of Life Inventory. Differences between child and parent reports were analysed using paired t-tests. Predictors of QoL were analysed using hierarchical multiple regression.

Results: Parents reported fewer conduct problems, peer problems, and total difficulties than children, while rating prosocial behaviours higher. Self-reported QoL scores were higher, especially in social and school domains. Lower self-reported difficulties and lower paternal education predicted higher self-reported QoL, while higher maternal education and IQ predicted better parent-reported QoL.

Conclusion: Discrepancies between self- and parent-reported outcomes highlighted the importance of integrating both perspectives in care planning for children with BIF.

Background: We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success.

Method: Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis.

Results: We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other.

Conclusions: Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.