Journal of Developmental and Physical Disabilities最新文献

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.

Abstract

Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between formal and natural supports. Often, there are systemic and personal boundaries around the nature and extent of support that can be offered to persons with developmental disabilities through formal mechanisms, yet the value of natural supports in the lives of persons with developmental disabilities is often undervalued in society. Therefore, the objectives of this study were to explore formal support providers’ perspectives on (a) the unique skillsets and attributes of natural support providers and formal support providers; and (b) how we might best enable both natural and formal supports for persons with developmental disabilities and their families. Following a qualitative approach, we interviewed 16 formal support providers working with adults with developmental disabilities and their families via Zoom. We analyzed data using thematic analysis. We organized results into three themes: the role of natural supports, the role of formal supports, and strategies to best configure a system of supports. Results imply that there is a need for investment of funding to incentivize both support structures for adults with developmental disabilities and their families. Future studies should explore the perspectives from people with developmental disabilities and their natural support providers.

The present study aimed to examine the effectiveness of a multi-component intervention on cooperative behaviors in children with autism spectrum disorder (ASD). In this study, three dyads comprising six boys aged between 4.5 and 7 years with ASD participated, following a randomized multiple baseline design. The participants were asked to construct models together using toy sets. The visual analysis and randomization test (p < .01) showed that the intervention increased cooperative behaviors for all six participants, and improvements were maintained after the intervention components were terminated. Four participants in two dyads demonstrated generalization to three new toy sets. For the remaining two participants, the interdependent group contingency was reintroduced in order for them to demonstrate cooperative behaviors.

Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study’s aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I examined fiscal year (FY) 2021 Medicaid HCBS 1915(c) IDD waivers to determine trends in how they allocated respite, family support services, and family training and counseling, and how they permitted paying family caregivers to provide services. HCBS waivers provided respite services to relieve unpaid caregivers, family support services to relieve caregivers and enhance family functioning, and family training and counseling services to strengthen caregiver abilities and self-efficacy. In FY2021, states projected spending $947.4 million on respite services for 174,406 people with IDD, $433.3 million on family support services for 14,159 people with IDD, and $9.3 million for family training and counseling services for 8,744 people with IDD. In addition, states also supported family caregivers by allowing them to be paid to provide certain HCBS services to their family members with IDD; 1,843 HCBS services, or approximately half of HCBS services in FY2021, allowed family members to be paid to provide services to people with IDD. Through integrated supports, states can maximize the quality of life of both people with IDD and their families.

Physical health habits including physical activity and nutrition are essential for numerous health benefits. However, beginning in childhood, individuals with intellectual disability engage in lower levels of physical activity and healthy nutrition habits compared to individuals without intellectual disability, a trend that carries on into adulthood. Researchers continue to examine the effectiveness of interventions to increase engagement in physical health habits and improve health outcomes for individuals with intellectual disability, with an increased focus on technology-based interventions. This scoping review aimed to describe how technology was being utilized within interventions to improve health-related outcomes for adults with intellectual disability. We described the technology being used, who used the technology, and the feasibility of the interventions. Forty-one studies met criteria, with a total of 698 adult participants with an intellectual disability. While no studies on nutrition were located, technology was used in various physical activity interventions, with the most common being preferred stimulus access, exergaming, and video-based instruction. Most studies took place at day or rehabilitation centers, were implemented by research teams, and either did not discuss cost or were vague in their description related to cost. Implications, limitations, and future research directions are discussed.