Journal of Intellectual Disability Research最新文献

Background: Although sexual health literacy is recognised as critical to sexual health and well-being, little is known about how people with intellectual disabilities acquire or use sexual health literacy skills. This scoping review examined research to explore what is known about sexual health literacy among adults with intellectual disability.

Method: We used Arksey and O'Malley's scoping framework to guide our review. We searched five electronic databases and reference lists of full-text articles. Inclusion criteria included (i) original research in peer reviewed journals; (ii) published in English; (iii) addressed perspectives or experiences of people with intellectual disabilities regarding sexual health literacy or related topics. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (PRISMA-Scr). All text labelled 'results', 'findings' or 'discussion' was subjected to interpretive content analysis.

Results: The search strategy identified 5447 records, 102 met all eligibility criteria and were included for review. A conceptual framework to understand factors shaping sexual health literacy was developed. In this framework, sexual health literacy is underpinned by two fundamental pillars: sexual knowledge and sexual autonomy. The availability of sexual knowledge and sexual autonomy is threatened by several factors in the social environment: presumed sexual vulnerability and sexual incompetence, and expectations of heteronormativity and asexuality. Combined these factors reduce opportunities for acquisition of sexual knowledge and enactment of sexual autonomy and ultimately appear to limit sexual literacy among people with intellectual disabilities.

Conclusion: Sexual health literacy is critical for people with intellectual disabilities to enjoy full sexual citizenship. Despite this limited attention has been paid to supporting people with intellectual disabilities to acquire and use sexual health literacy skills. Comprehensive education programs are needed to address this gap and ensure the rights of people with intellectual disabilities to engage in safe, pleasurable sexual experiences and enjoy good sexual health are upheld.

Background: Health care accessibility and inequality for people with intellectual disabilities have long been subjects of discussion. Issues related to eye examinations and visits to ophthalmologists are particularly challenging for these people. However, disability studies and healthcare from the perspectives of people with intellectual disabilities remain scarce. The current study aims to explore the experiences and expectations of adults with intellectual disabilities during ophthalmologist visits, with a focus on their subjective viewpoints.

Methods: A qualitative study was conducted between 2021 and 2022 that involved semistructured interviews with 22 adults with intellectual disabilities who were users of day programs or residential services in Taiwan. The interviews, supplemented with pictures, were conducted using purposive sampling. Thematic analysis was used to analyse the data.

Findings: Four themes emerged regarding their experiences with ophthalmologists: 'Because my eyes itched, I went to the doctor;' the need for clear and slow explanations during vision screening; anxiety and discomfort during equipment use and focused examination; and 'The doctor is good. She smiles and is gentle with me.' In addition, two themes related to their expectations were identified:equipment use and pre-examination instructions and ideal characteristics of ophthalmologists: smiling and talking slowly.

Conclusion: For people with intellectual disabilities, an ideal ophthalmologist is patient-centred and provides individualised care-'Smiling and Talking Slowly'; otherwise, fear of visiting eye doctors worsens their health inequalities. Integrating these considerations into ophthalmology training and practice is essential to enhance the quality of care for and the well-being and dignity of people with intellectual disabilities.

Over time, sexuality has become a crucial aspect in people's lives, regardless of physical, intellectual or social conditions, ranging from sex and sexually transmitted diseases to gender identity and sexual orientation. The aim of this study was to carry out a review of the scientific literature on sexual orientation in people with intellectual disabilities from the Education and Health Sciences and to analyse how sex education is addressed in this group. To this end, a systematic review of research on sexual orientation in people with intellectual disabilities was carried out. The results obtained reveal that there is hardly any scientific corpus on this subject, so emphasis should be placed on the attitudes towards LGTBIQA+ people with intellectual disabilities, as well as on the training and understanding of the different sexual orientations they may have. It is essential to face the obstacles, stigmas and prejudices established in society to normalise the sexual needs of these people, improving, consequently, their quality of life.

Background: Borderline intellectual functioning (BIF) is a condition that involves limitations in cognitive skills that affect the daily functioning of people who present it. BIF has lost visibility in diagnostic manuals such as the DSM-5-TR and ICD-11, which relegate it to complementary categories of aspects requiring attention, rather than recognising it as a category of its own. This lack of recognition as well as unclear criteria for diagnosis underscores the need for a deeper understanding of BIF.

Method: The study conducted a scoping review to map the available evidence in the field of BIF. Following the PRISMA-ScR framework, ProQuest, WoS, SCOPUS and EBSCOhost databases were searched. Documents were selected based on inclusion criteria: date of publication (since 2012), study of BIF as a specific group and language (English or Spanish). A total of 138 documents were included, both academic and grey literature.

Results: The review mapped the literature into key categories: intellectual functioning, adaptive functioning and additions for a comprehensive evaluation. Most research focused on comorbid psychiatric, emotional and behavioural disorders associated with BIF, as well as cognitive aspects. Very few addressed adaptive functioning explicitly, a crucial area for diagnosing and supporting individuals with BIF, though many covered its domains (conceptual, social and practical). Studies predominantly used quantitative methodologies, with only a few incorporating qualitative methods and directly involving people with BIF.

Conclusions: The review emphasises the need for a clearer definition of BIF. Future studies should incorporate the perspectives of individuals with BIF to fully understand their needs and challenges across various life domains.

Background: Dravet Syndrome (DS), Helsmoortel-Van Der Aa Syndrome (HVDAS) and Tuberous Sclerosis Complex (TSC) are rare genetic syndromes, sharing intellectual disability (ID) and motor delay. In DS, two distinct gait patterns, crouch and non-crouch, have been described using instrumented 3D gait analysis (i3DGA). This cross-sectional study measures gait in participants with TSC and HVDAS. The findings are compared to the known crouch and non-crouch gait patterns observed in DS and to typical gait.

Methods: Participants (6-22 years) with DS (n = 37; 19 crouch and 18 non-crouch), HVDAS (n = 12) or TSC (n = 8) were compared with typically developing (TD) peers (n = 33). All participants underwent i3DGA (Plugin Gait model processed with Vicon Nexus and MATLAB®) to investigate spatiotemporal and lower-limb kinematics.

Results: All three genetic syndromes showed increased step width. Participants with HVDAS and DS, but not participants with TSC walked with decreased step length and velocity compared to TD. HVDAS demonstrated increased knee flexion during the stance phase, lack of hip extension during pre-swing, and increased ankle dorsiflexion during some phases of the gait cycle (p < 0.001). Additionally, HVDAS showed similar kinematic deviations to DS-NonCrouch. No significant differences were found in terms of kinematics between TSC and TD peers (p > 0.05).

Conclusion: The current study reveals differences in gait characteristics from typical functional gait in rare genetic disorders. DS-Crouch, DS-NonCrouch and HVDAS display a more impaired gait from a biomechanical perspective than TSC. The variability of clinical and genetic features might explain heterogeneity in gait deviations and should be further explored.

Background: Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities.

Methods: We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify 'gate opening' actions (actions that support research participation) and 'gate closing' actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions.

Results: Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers.

Conclusion: We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with intellectual and/or developmental disabilities to learn about research opportunities.

Background: Adults with Down syndrome (DS) experience an increased risk of Alzheimer's disease (AD). Valid cognitive assessments for adults with DS with severe/profound intellectual disability (ID) are needed. It is unclear whether eye tracking is feasible for detecting AD in DS.

Method: Fifty-three adults with DS completed a visual paired comparison (VPC) task, a battery of cognitive measures, and underwent PET scanning. Study partners reported on the participant's dementia symptoms. Bivariate correlations assessed associations between eye-tracking metrics and AD-related pathology and symptomatology. Analyses included the full sample (n = 53) and a subgroup with an IQ ≤ 45 (n = 33).

Results: Greater fixation duration during the habituation phase was associated with better cognitive performance on the Modified Cued Recall Test (mCRT) (intrusions: r = -0.39, p = 0.011) and less PET tau (r = -0.47, p = 0.014). Larger saccadic amplitudes during the test phase were associated with younger age (r = -0.45, p < 0.001), better cognitive performance on the mCRT (total: r = 0.31, p = 0.041; intrusions: r = -0.33, p = 0.032) and less PET Aβ (r = -0.40, p = 0.025). Greater preference to fixate on the novel image was associated with fewer dementia symptoms (count: r = -0.44, p = 0.002; duration: r = -0.38, p = 0.009). This pattern of significance remained for the subgroup with lower IQ scores.

Conclusion: The VPC task is a potentially useful method for assessing AD-related cognitive impairments in adults with DS across varying ID levels.

Background: The connection between sleep problems and behavioural challenges in individuals with Down syndrome (DS) has been a central focus of research across different age groups. However, uncertainty remains regarding this association, particularly when relying solely on daily-based assessments. This study aimed to examine the relationship between sleep problems and behavioural challenges at both overall (macro) and daily (micro) levels among youth with DS.

Methods: Sleep disturbances were measured in a sample of 65 youth with DS aged 6-17 years using the Children's Sleep Habits Questionnaire (CSHQ) and actigraph watches assessing sleep efficiency, sleep duration and wake after sleep onset. Behavioural challenges were evaluated through externalising and internalising subscales of the Child Behavior Checklist (CBCL) and of the Scales of Independent Behavior, Revised (SIB-R).

Results: The findings demonstrated that over a period of time, sleep problems are significantly associated with both externalising and internalising behaviours as measured by CSHQ and CBCL, even after accounting for the effects of IQ and SIB-R Broad Independence. No significant correlations were observed on a daily basis over seven consecutive days, as measured by actigraphy and both externalising and internalising indices of SIB-R.

Conclusions: The results highlight the complexity of the sleep-behaviour relationship in DS, indicating that while chronic sleep issues impact long-term behaviours, nightly variations do not predict immediate behavioural changes.

Background: Resting metabolic rate (RMR), the energy required by the body at rest, is the largest part of total daily energy expenditure. Commonly used prediction equations may overestimate RMR in adults with Down syndrome (DS). The purpose of this study was to assess the equivalency of prediction equations for estimating RMR in adults with DS.

Methods: Twenty-five adults with DS (24 ± 5 years of age, 64% female) completed RMR assessments at an academic medical centre in the United States between November 2021 and July 2023. Measured RMR (kilocalories per day) was compared to estimated RMR from eight prediction equations using a null hypothesis significance (i.e., a paired t-test) and equivalence (i.e., a two one-sided test) tests. Bland-Altman plots, Pearson correlations and linear regressions were used to evaluate the bias between the measured and predicted RMR values.

Results: Measured RMR in adults with DS was 1090 ± 136 kcal/day. Prediction equations overestimated RMR by 8 ± 16% (76 ± 165 kcal/day) to 45 ± 16% (488 ± 165 kcal/day) except for the Bernstein fat-free mass equation which underestimated RMR by 0.2 ± 11.5% (8 ± 123 kcal/day) and was statistically equivalent to measured RMR in our sample (p = 0.027).

Conclusions: The Bernstein fat-free mass equation offers better accuracy in adults with DS than other RMR prediction equations, but the equation needs to be evaluated in larger, more diverse samples of adults with DS.