Journal of Intellectual Disability Research最新文献

Background: Young adults with intellectual disability (ID) are increasingly attending college through inclusive post-secondary education (IPSE) programmes. However, little is known about their psychological experiences at college. The current study aimed to examine the role of belongingness, anxiety and depressive symptoms in predicting life satisfaction for college students with ID enrolled in IPSE programmes at 4-year American colleges and universities.

Method: College students with ID (n = 129) from 21 IPSE programmes across the United States completed an online survey reporting on mental health symptoms, belongingness and life satisfaction. Programme staff (n = 21) from each of the IPSE programmes also completed an online survey providing information about their programmes.

Results: Results of the study indicated that there were significant differences in life satisfaction and level of anxiety based on gender, residential status and access to mental health services. A hierarchical regression analysis revealed that belongingness was significantly associated with life satisfaction and accounted for 12.5% additional variance in life satisfaction, above and beyond the variance accounted for by race, ethnicity, residential status and mental health symptoms.

Conclusion: This study provides information on the well-being of college students with ID attending IPSE programmes, indicating high rates of mental health symptoms along with the role played by their sense of belonging in relation to their reported life satisfaction.

Background: Physiotherapy plays a vital role in the care and development of children with Down syndrome (CDS), especially in addressing related health issues. Understanding caregivers' perspectives on physiotherapy for CDS is essential for enhancing service delivery. This scoping review aims to synthesize research on parental experiences and expectations concerning physiotherapy for CDS.

Method: Scoping review methodology follows the recommendations of Arksey and O'Malley and the steps described by the Joanna Briggs Institute. A comprehensive search strategy was employed across four electronic databases: PubMed, Scopus, Web of Science and CINAHL, as well as relevant grey literature sources.

Results: Out of the 97 studies screened, five met the inclusion criteria and were included in the review. Parents widely viewed physiotherapy as essential for their child's development, reporting benefits in motor skills, confidence and independence. However, they also faced challenges such as limited access, emotional strain and service dissatisfaction.

Conclusions: This review enhances our understanding of the experiences and expectations of parents concerning physiotherapy for children with Down syndrome. It identifies important areas where future research and clinical practice can improve developmental outcomes and the quality of life for CDS.

Background: Adults with Down syndrome (DS) are less physically active than those without DS. Among adults with DS, those with congenital heart disease (CHD) have lower physical activity than those without CHD. Many trials exclude people with CHD from exercise trials; thus, the safety and effectiveness of these interventions for increasing physical activity and fitness in adults with DS and CHD are not known. The purpose of this analysis was to evaluate the safety and preliminary effectiveness of an exercise intervention in adults with DS and CHD for increasing physical activity and fitness.

Method: This secondary analysis used data from a 12-month randomized controlled physical activity intervention for adults with DS. Safety of the intervention was assessed as number and severity of adverse events and compared by CHD status. Changes in physical activity (accelerometry) and fitness (VO_2peak) among those with CHD were evaluated using mixed effects models.

Results: Thirty-six participants had CHD and were randomized to one of the exercise intervention arms (average age 25.5 years, 55.6% female). There were no differences in number (CHD: 18 vs. no CHD 22 events; rate ratio 1.02, p = 0.94) or severity (p = 0.25) of adverse events between those with and without CHD. Participants significantly increased moderate-to-vigorous physical activity minutes per day (+8.6 min/day, p = 0.045) and VO_2peak (+2.1 mL/kg/min, p = 0.036).

Discussion: Results from this analysis show preliminary support for young adults with DS and CHD to safely participate in exercise interventions that are appropriately designed for their inclusion. These interventions also demonstrate preliminary effectiveness for increasing physical activity and fitness. Findings should be repeated and confirmed in a larger, more diverse sample to understand the safety and impact of exercise on health in persons with DS and CHD.

Background: Despite the growing relevance of dementia in people with intellectual disabilities, there are currently no national recommendations in Austria to inform diagnostic protocols within care facilities. In order to gain a state-of-the-art understanding of the issue, the aim of this study was to map out the process currently followed by formal caregivers when they suspect a person in their care has dementia.

Method: We conducted 30 interviews with formal caregivers working in three care facilities for people with intellectual disabilities in Styria, an Austrian province. The interviews were transcribed and analysed using structured qualitative content analysis.

Results: In order to notice signs of early dementia and start the diagnostic process, a long-term relationship between formal caregivers and the person with intellectual disabilities appears to be crucial. Standardised observational instruments for monitoring changes were used by only three formal caregivers. In 19 out of 30 cases, no diagnostic assessment was carried out, even though dementia was suspected.

Conclusions: To uphold the right to health for older adults with intellectual disabilities, policies and recommendations must be established in Austria to ensure timely and accurate dementia diagnoses. This requires the introduction of standardised observational and documentation tools, clear diagnostic pathways and specialist diagnostic centres.

Introduction: Until recently, no diagnostic instrument was available to classify posttraumatic stress disorder (PTSD) in individuals with severe or moderate intellectual disability (SID). This study investigates the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability (DITS-SID), a caregiver-administered interview corresponding with DSM-5(TR) PTSD criteria for children ≤ 6 years. Interrater reliability and convergent and content validity were examined.

Methods: The DITS-SID, Aberrant Behavior Checklist (ABC) and Child and Adolescent Trauma Screener 3-6 (KJTS 3-6) were administered to relatives and professional caregivers of 97 adults with SID.

Results: Interrater reliability was good to excellent. Convergent validity was supported by correlations with ABC and KJTS 3-6 scores. Content validity appeared good as adults who met PTSD symptom criteria had, on average, higher interference scores, higher DITS-SID atypical symptom scores and a greater number of experienced traumas and stressors. No association was found between meeting PTSD symptom criteria and PTSD criterion A.

Conclusion: The DITS-SID appears feasible for classifying PTSD in adults with SID. Future research should evaluate its validity in children with SID.

Background: This study examined the experiences of infants diagnosed with fragile X syndrome (FXS) in the newborn period and their caregivers during the infant's first year of life. The primary objective was to understand caregiver concerns and access to early intervention services for infants diagnosed with FXS presymptomatically.

Methods: Participants for this study were part of a pilot intervention programme for newborns with FXS and their caregivers. A mixed-methods approach was taken combining data from caregiver questionnaires as well as intervention session notes to identify caregiver concerns and early intervention services.

Results: Caregivers of infants with FXS consistently reported concerns in motor development in the first few months of life with increasing concern regarding communication development closer to 12 months of age. Despite all being eligible based on having an established condition and instruction for accessing early intervention services provided by the intervention team, only half of participants were enrolled in their state's Part C programme by the child's first birthday. Occupational therapy was the most accessed service (33% of infants), followed by physical therapy (27%), feeding therapy (20%), speech therapy (13%) and developmental play therapy (7%).

Conclusions: Although one of the main benefits of earlier diagnosis is purported to be earlier access to interventions, we found infants diagnosed with FXS prior to emergence of symptoms experienced barriers to accessing early intervention services, despite FXS being an established condition for Part C services. These findings highlight the need for further exploration of the referral process for infants diagnosed with neurogenetic conditions in infancy.

Background: Family members' involvement in the care for their relative often continues after their relative has moved out of the family home. However, little is known about the needs of family members when collaborating specifically with support staff caring for their relative. This scoping review provides an overview of existing literature to inform future research.

Method: The review was conducted in accordance with the PRISMA for Scoping Review statement. Seven databases were systematically searched in April 2022 (with a final update in May 2025). Studies that were published in English in peer-reviewed journals and examined the needs and experiences of family members collaborating with support staff in residential care settings were considered for inclusion. The Mixed Methods Appraisal Tool was used to assess risk of bias and a thematic synthesis was conducted to analyse the data.

Results: Ten articles met the inclusion criteria. Four studies focused on family members' experiences following a relative's transition from institutional or hospital settings, one study on sibling-staff collaboration, one on the roles of adult siblings, one exploring family experiences during the COVID-19 pandemic, one on parental perceptions of communication, one on family experiences postabuse inquiry and one focused on collaboration within hospital settings. The studies involved relatives with severe (n = 1), mild, severe and profound (n = 1), severe to profound (n = 1) or profound intellectual disabilities (n = 3). Four did not mention the level of intellectual disability. The synthesis yielded four analytical themes: (1) complexities in building personal relationships amidst changing contexts (n = 8), (2) navigating how to address unmet needs and the vulnerability it exposes (n = 3), (3) a desire for partnership and recognition (n = 10) and (4) a desire for staff to uphold their relative's quality of life (n = 10).

Discussion: This review highlights key areas for future research, including how family characteristics, disability severity and living arrangement can influence needs and experiences when collaborating with support staff. Additionally, further insight is needed on what impacts the dynamic nature of family-staff relationships. Lastly, understanding the views and experiences of support staff regarding family involvement is important, as it can aid the development of collaboration that is sensitive to their specific needs.