Journal of Intellectual & Developmental Disability最新文献

Background: Minimally verbal autistic people with intellectual disabilities are at risk of anxiety, yet remain underrepresented in research due to the lack of tools adapted to their functional profiles. This study aimed to develop and validate the AIDA Scale: Anxiety in People with Autism and Intellectual Disability Assessment.

Method: A total of 247 participants (133 parents; 114 professionals) contributed across three phases: indicator identification, pilot study, and validation.

Results: Evidence of reliability (internal consistency and omega coefficient) and validity was gathered, including examination of the scale's dimensionality (parallel analysis, model fit indices, and factor loadings inspection) and its relationship with other variables. Findings support the use of a single total score encompassing general behaviour and behavioural change indicators.

Conclusion: The AIDA Scale is an effective tool for assessing anxiety symptoms in this population. Meeting these needs is critical for improving emotional wellbeing and ensuring people' rights to appropriate emotional care.

Background: This study evaluated a 12-session fully immersive virtual reality (VR) training program for people with intellectual disabilities, assessing its effects on (i) non-practiced VR game performance, (ii) cognitive and neuromotor response times, and (iii) skill transfer to real-world tasks.

Method: A pre-post longitudinal design was used, with 17 participants in the VR group (VRG) and 21 in the control group (CG). The VRG completed two weekly 60-min training sessions over nine weeks, while the CG continued usual activities.

Results: VRG significantly improved VR game performance (ES = 0.46-1.38, p ≤ 0.040), while CG showed no changes. Response times did not improve in either group. Dual-task walking and balance improved in both groups, but motor skill performance declined in CG (p = 0.003).

Conclusion: Fully immersive VR enhances cognitive-motor skills, but their transfer to specific real-world tasks remains limited, highlighting the need for integration with practical training.

Background: The aging of people with intellectual disabilities constitutes a growing demographic phenomenon, yet it remains underexplored from a rights-based perspective. Understanding how self-determination is experienced in residential settings is fundamental for promoting dignified aging.

Method: This qualitative study involved semi-structured interviews with 86 older adults with intellectual disabilities living in nine long-term care facilities in Chile.

Results: Five central themes were identified: margins for daily decision-making, validation of personal voice, structural barriers to autonomy, enabling supports, and the relationship between self-determination and emotional wellbeing. Findings showed that self-determination was heavily influenced by institutional cultures, communication accessibility, and relational environments rather than by individual characteristics alone.

Conclusions: Promoting self-determination in long-term care requires institutional reforms focused on cognitive accessibility, flexible routines, and formal participatory spaces. Ensuring the right to decide is essential for improving emotional wellbeing and guaranteeing dignified aging for people with intellectual disabilities.

Background: Adults with Down syndrome present comorbidities that may worsen with age. Although falls are common in this population, postural control hasn't been clinically studied. This study aimed to assess postural control in adults with Down syndrome using Computerized Dynamic Posturography (CDP) and evaluate the role of sensory inputs.

Method: Adults with DS (age >18 years) were recruited from outpatient clinic. Exclusion criteria included inability to cooperate or stand. Postural control was assessed with the Equitest DP system which includes the Sensory Organization Test (SOT), measuring composite equilibrium score (COMP), and sensory contributions: somatosensory (SOM), visual (VIS), and vestibular (VEST).

Results: Sixty subjects (mean age 36.6 ± 10.3 years, 48.3% male) participated. Pathological COMP scores were in 43.3%. VIS and VEST impairments in 31.7% and 55%, respectively; SOM scores were normal. In linear regression models, VIS and VEST showed associations with age.

Conclusions: Postural deficits are frequent and unrecognised in Down syndrome.

Background: This study focused on public transport accessibility as experienced by the parents of people with profound intellectual and multiple disabilities.

Method: Research material consisted of unfocused, partially-structured interviews concerning the personal experiences of parents of people with profound intellectual and multiple disabilities; 20 parents of persons with profound intellectual and multiple disabilities participated in the study. The analytical method relied on open and axial coding performed by means of grounded theory methodology procedures.

Results: The study revealed two main themes: the first related to disruptions in the daily use of urban public transport; the second provided an assessment of the impact of public transport's (in)availability on the family.

Conclusion: The study showed that everyday mobility for families caring for people with profound intellectual and multiple disabilities was influenced by a variety of constraints that these families sought to negotiate and overcome.

Background: This research investigated quality of life (QoL) predictors in Spanish adults with intellectual and developmental disabilities. Individuals with high versus low-support intensity levels were compared.

Method: In this cross-sectional study, 396 participants were divided into two groups based on support intensity and their QoL was evaluated using validated proxy-report measures (INICO-FEAPS/San Martín). Hierarchical regression analysis was conducted for 19 variables (QoL predictors) relating to personal characteristics, support needs, and environment.

Results: Findings demonstrated distinct QoL predictors for the two groups: recorded intellectual disability etiology; mental health status; living environment, adaptive behaviour; and institutionalisation were significant for the low-support intensity group, while adaptive behaviour and behavioural disorders were significant for the high-support intensity group.

Conclusion: Different variables affect QoL for low and high-support intensity groups and highlight potential benefits of personalised care based on individual dependency levels.

Background: Objective assessment of pain-related behaviours is crucial in adults with profound intellectual and multiple disabilities. No standardised pain observation instrument that specifically focuses on this target group is currently available. A previous study identified 12 pain-related behaviours in these persons. This study aimed to develop a valid and reliable instrument based on these 12 pain-related behaviours to assess pain in these adults in daily situations.

Method: Videos of 91 adults with profound intellectual and multiple disabilities in potentially painful daily situations were scored using the 12 pain-related behaviour items. Mokken scale analysis was used to determine the construct validity of these items.

Results: Analysis resulted in a 9-item scale (H = .46, Rho = .70), which appeared to be sample independent for the variables of sex, age and level of motor functioning.

Conclusion: A scale containing 9 items (APOS-PIMD) with reasonable construct validity and sufficient reliability was developed, which can be used to measure pain in adults with profound intellectual and multiple disabilities in daily situations.

Background: Family quality of life (FQOL) includes objective and subjective factors representing wellbeing for families of individuals with intellectual and developmental disabilities. The current project investigated the integration of objective and subjective data using the Family Quality of Life Survey - 2006 (FQOLS-2006).

Method: 169 parents/caregivers of individuals with intellectual and developmental disabilities participated. Relationships were examined between objective information from the A Sections of the Health, Finances, and Support from Services domains of the FQOLS-2006, and more subjective FQOL ratings in the B Sections.

Results: We found strong relationships between the objective and subjective sections of the FQOLS-2006. Respondents reporting challenges in the A Sections generally reported lower Attainment/Satisfaction ratings in the B sections. However, some responses were discrepant.

Conclusion: Objective and subjective measurements of FQOL were consistent but independent. Each type of measurement provided unique information and FQOL is best understood through the integration of these methods.

Background: The comprehensive literacy program Schoolmates, an adaptation of the program Friends on the Block, combines (high-frequency) sight word and phonics instruction for German-speaking students with intellectual disabilities.

Method: A single-case multiple baseline design was used to assess the progress of nine primary school students with intellectual disabilities in reading practised sight words and simple syllables (basic decoding). Data were analysed using standardised visual inspection, non-overlapping indices and hierarchical piecewise linear regression.

Results: Students demonstrated moderate improvement in reading sight words, with a significant effect on both the level and trend. Six out of nine students improved their basic decoding skills from the baseline to the follow-up phase.

Conclusion: The comprehensive literacy program Schoolmates appeares to promote sight word reading among primary school students with intellectual disabilities. Future studies could investigate whether a higher frequency or longer duration of instruction affects basic decoding skills.

Background: Families with intellectual disabilities are overrepresented in child protection systems. However, little is known about how adverse experiences co-occur in this population. This study examined the prevalence and interrelations of original and extended adverse childhood experiences (ACEs) and contextual child and family variables in families with intellectual disabilities under family supervision orders (FSOs).

Method: We conducted an exploratory cross-sectional analysis of 128 Dutch case files concerning children aged 0-17 under an FSO, using structured codebooks.

Results: Children were exposed to M = 4.4 original ACEs (SD = 2.0); 66.4% experienced four or more. Extended ACEs (e.g., out-of-home placement) and family risk factors (e.g., parental mental health problems, limited social support) were common. Several significant interrelations emerged across child, parent, and resource domains.

Conclusion: Findings highlight the need to address co-occurring adversities across family contexts when developing ACE-informed strategies in child protection settings.