Journal of Developmental and Physical Disabilities最新文献

To observe changes in three clients with intellectual disabilities and severe behavioral problems and staff in a long-term care residential facility after redesigning the clients’ rooms by making them more personal and homely, adjusting the amount of stimuli, changing the layout, connecting to the outdoor area, and using high-quality natural materials. Relatively many clients with intellectual disabilities exhibit severe problem behaviors, including self-harm, aggression toward others, and repeated destruction of their own rooms, which can eventually result in a barren, inhumane living environment. Research on these clients is limited. Data were collected in a mixed methods study in which quantitative and qualitative data were analyzed. After the redesigns, positive changes were observed in the well-being and behavior of all three clients, for example, with respect to quality of life, privacy, freedom of choice, problem behavior, mood, cognition, activities of daily living, leisure activities, social behavior, self-harm, and constraints. There were no changes in the use of psychotropic medication. Quality of life scores increased in two cases, but were significant in only one. Emotional and behavioral problem scores decreased significantly in two cases, but in only one case these results were maintained at follow-up. Staff experienced a more pleasant, safe, and functional work environment, with improved provision of indicated care and interaction. Absenteeism decreased significantly in two of the three cases. Redesigning clients’ rooms could potentially be a promising intervention for clients with intellectual disabilities and severe chronic behavioral problems.

There are inequities in engagement with established early childhood developmental surveillance programs, eclipsing disadvantaged families. The current study sought to address this by dovetailing developmental surveillance with immunization visits and other opportunistic contacts with children at general practices). While 53 General Practices were recruited, significant COVID-19 disruptions resulted in only 81 children being screened (both parent-administered and GP completed). Of the 81 children, 11 screened positive and all of them along with 5% of screen negatives (i.e. 4 children) received clinician-administered reference-standard assessment for autism and developmental delay (DD) using Autism Diagnostic Observation Schedule (ADOS), Autism Diagnostic Interview Schedule –Revised (ADI-R), and Mullen Scales of Early Learning (MSEL). All children found by reference-standard assessment to have probable autism and/or DD had screened positive during the screening process, and 90.9% of children who screened positive were found by reference-standard assessment to have probable DD or autism. The findings provide early evidence for the feasibility and usefulness of parent completed and GP administered developmental measures during opportunistic contacts with GPs as a promising method to facilitate early identification of DD or autism.

Despite strong evidence in favor of physical activity (PA), adults with autism spectrum disorder (ASD) are not meeting established PA guidelines to engage in at least 150 min of moderate to vigorous PA per week. Barriers to daily PA engagement include limited access to health services, transportation, and reduced self-determined motivation. Telehealth provides a potential alternative to deliver PA programming in a more accessible platform for adults with ASD. This pilot randomized controlled trial (RCT) assessed the preliminary efficacy of a 10-week PA intervention program called Physical Activity Connections via Telehealth (PACT) that utilized telehealth and remote technology, including Fitbit wearable device use, peer-guidance, and individualized home exercise program among adults with ASD. Primary health outcomes, collected at baseline before randomization and post-intervention, included self-determined motivation assessment via Behavioral Exercise Regulation Scale (BREQ-2), self-report PA via Godin-Shephard Leisure-Time Physical Activity Questionnaire (GSLT-PAQ), steps per day PA via Fitbit device, body mass index (BMI), and waist-to-height ratio (WtHR). A total of 18 adults, 11 males, with a mean age of 26.4 years, with a primary diagnosis of ASD participated in the study. Although there were no changes in BMI or WtHR at post-intervention, participants receiving PACT, significantly increased both their self-report PA scores (GSLT-PAQ) from 26 to 68, (p = 0.002), and steps per day from 5,828 to 7,443, (p = 0.015) with a moderate effect size (d = 0.72). The results of this pilot study support peer supported telehealth-based PA intervention for adults with ASD to increase PA.

Increasingly, interventions are being developed and tested with families of color, including Latino families of transition-aged youth with autism. However, without culturally responsive measures, it is difficult to determine whether an intervention is effective. The purpose of this study was to improve the cultural responsiveness of measures related to: knowledge of adult disability services, advocacy, and family empowerment. Altogether, 30 Latinx parents of youth with autism participated in this study. Participants completed surveys and interviews to inform changes to the measures. Changes were made in relation to: wording, format, and concepts. The revised measures were demonstrated to have high reliability. Implications for future research and practice are discussed.

Abstract

Sibling relationships may be strained when one sibling is diagnosed with autism and the other is not. The way that siblings interact during play is one indicator of the quality of this relationship. Non-autistic siblings have been taught to encourage play in their autistic siblings, but there is limited literature examining the impact of intervention on the quality of the siblings’ relationships. In this study, we taught four non-autistic siblings to encourage and praise play with their autistic siblings as well as self-monitor those play skills. We also measured changes in social-communicative behaviors during siblings’ interactions. All non-autistic siblings learned the targeted play skills and the majority increased social-communicative behaviors. Only one autistic child increased their social-communicative behaviors toward their non-autistic sibling. On average, sibling dyads engaged in more interactions, with an increase in the duration of interactions during play. Future sibling intervention research should evaluate child characteristics and intervention factors that may influence children’s response to intervention, additional interventions, and continue to incorporate other measures of relationship quality.

Mumbai is home to over 22 million people, of which 41.3% are estimated to live in bastis with limited access to basic facilities and support. The number of people with disabilities living in Mumbai was 0.48 million in 2011, expected to rise to 4 million by 2025. For people with disabilities to live a better quality of life, they require a combination of support from the community for their day-to-day living and formal support for their rehabilitation. This study used a qualitative exploratory approach and explored the benefit of integrated support (natural + formal) for people with disabilities. Fifteen people with diverse disabilities and thirteen support providers were purposely recruited from five bastis, and data was collected through face-to face interviews and through a psycho-social helpline. Three themes, i) understanding formal and natural supports in Bastis, ii) the role of the community, and iii) the Intersection of formal and natural support. Findings indicate that while formal and natural supports have their independent benefits, yet together these supports make life easier and more meaningful for people with disabilities.

Applied Behavior Analysis (ABA) is the branch of behavior science focused on solving problems of social significance. For over six decades, ABA researchers and practitioners have sought to improve the lives of people with intellectual and developmental disabilities (IDD) through application of evidence-based supports. Influenced by the disability rights movement which gained momentum in 1970s and 80 s, the field of ABA has developed an array of procedures to enhance autonomy and choice of people with IDD. These include assessing individual preferences, teaching choice making, augmentative and alternative communication, and techniques for supporting greater self-control. We present behavior analytic definitions of autonomy and choice, illustrate how each of these strategies enable greater autonomy and choice of people with IDD, and discuss unresolved issues and future directions.

Job burnout can lead to serious mental health problems and damage physical health, so it is meaningful to explore the predictors of job burnout. The purpose of this study was to explore the relationship between resilience, self-regulation and job burnout of parents of deaf and hard-of-hearing children in mainland China. A questionnaire on resilience, self-regulation and job burnout was conducted for 416 parents of children with deaf and hard of hearing, and the data were analyzed using mplus. The results show that resilience can reduce job burnout, and self-regulation regulates the relationship between resilience and job burnout. This study focuses on the relationship between resilience, self-regulation and job burnout of parents of deaf and hard-of-hearing children in mainland China, and expands the research field of resilience and job burnout. The limitation and influence of this study are also discussed.

Children on the spectrum often require both formal services and natural unpaid support from caregivers. Recent autism surveillance study in the US has reported an increase in racially/ethnically diverse autistic children (Maenner et al. in MMWR Surveillance Summaries 72(2):1, 2023). Standing at the intersection of race, disability and sometimes immigration status, racially/ethnically diverse autistic children and their caregivers face a plethora of barriers in accessing services and support. The time and effort devoted to learning this knowledge and managing services and support is significant (Brewer in Social Science & Medicine 215:61–68, 2018). As a result, families with low resources often struggle to maintain attendance once recruited to participate in parent training interventions (Carr et al. in Autism 20(6):643–652, 2016; Kasari et al. in Pediatrics, 134(1):e72–e79, 2014). Furthermore, these structural challenges can lead to elevated caregiver stress (DeLambo et al. in Journal of Developmental and Physical Disabilities 23:129–141, 2011; Martinez & Turnage in Issues in Mental Health Nursing 43(11):1030–1040, 2022), which in turn impacts their ability to learn new strategies and manage services (Marin et al. in Neurobiology of Learning and Memory 96(4):583–595, 2011). In the current paper we propose the adoption of using microlearning concept to breakdown culturally responsive interventions into bite-sized chunks to reach caregivers juggling with caregiving and other structural challenges. We present the process of adapting Parents Taking Action, a community-based culturally appropriate intervention targeting racially/ethnically diverse families of young autistic children, using the microlearning approach. We further discuss how the microlearning concept can be applied and its limitations.

Pediatric feeding disorders are common and are often associated with chronic medical conditions and developmental disorders. A multidisciplinary treatment approach may be offered through outpatient or intensive programs. Benefit has been demonstrated with intensive programs, but there is little data regarding outpatient approaches. We described outcomes from a well-established outpatient feeding assessment program related to the referral base and program outcomes. Study packets collecting demographics and self-reported feeding skills were distributed to the referral population and redistributed three months later. Standardized surveys implemented included Montreal Children’s Hospital Feeding Scale (MCH-FS) and parenting stress index (PSI-SF). One hundred and ninety-eight subjects completed the initial packet. MCH-FS was elevated in all subjects indicating a broad range of feeding concerns. PSI elevation was present in a broad range of comorbidities compared to group without comorbidities. At 3 months (n = 55), MCH-FS and feeding skills improved without change in PSI-SF. The quality of therapy overall was deemed excellent to above average by most subjects. A multidisciplinary outpatient program has a role in managing infants and children with feeding disorders regardless of comorbidity. Severely affected individuals may benefit from more intensive programs and/or may require long-term care to effect significant change.