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Intellectual and Developmental... Dec 2023Participation in work during school is a known predictor of postsecondary employment for transition-age youth with intellectual and developmental disabilities (IDD)....
Participation in work during school is a known predictor of postsecondary employment for transition-age youth with intellectual and developmental disabilities (IDD). Recent research has demonstrated the benefits of work on skill development in major life domains. The purpose of this study was to examine the impact of customized employment on the support needs of youth with IDD with a significant disability compared to those receiving treatment as usual. Findings indicated significant increases in independence in three specific domains for the treatment group versus control on the Supports Intensity Scale-Adult Version, including Home Living, Employment, and Protection and Advocacy. Findings suggest a therapeutic effect of work activities on growth and development in important life domains. Implications for future research, policy, and practice are discussed.
Topics: Adult; Child; Humans; Adolescent; Developmental Disabilities; Intellectual Disability; Employment; Rehabilitation, Vocational; Disabled Persons
PubMed: 38011743
DOI: 10.1352/1934-9556-61.6.481 -
Journal of Applied Research in... Nov 2023Natural supports are widely used by adults with intellectual and developmental disabilities. However, little research has been conducted on this topic. This study adds...
BACKGROUND
Natural supports are widely used by adults with intellectual and developmental disabilities. However, little research has been conducted on this topic. This study adds to the literature by examining the role of parents as natural supporters, other members of the natural support network, challenges families face as they secure natural supports, and advice parents have for other families.
METHOD
Twenty-three parents of adults with intellectual and developmental disabilities were interviewed. Data was analyzed using a constant comparative approach.
RESULTS
Family members and friends were key natural supporters. However, parents provided the bulk of support. A hesitation with asking others for support was a common barrier to building natural support networks. Parents encouraged others to connect with families with similar circumstances.
CONCLUSIONS
To ensure proper care for adults with intellectual and developmental disabilities, we must develop supports that meet family members' needs and identify ways to strengthen natural support networks.
PubMed: 37515390
DOI: 10.1111/jar.13145 -
Journal of Adolescence Jan 2024Although diagnosis and identification of IDD is improving, adolescents with IDD receive limited attention in research, particularly concerning their psychosocial...
BACKGROUND
Although diagnosis and identification of IDD is improving, adolescents with IDD receive limited attention in research, particularly concerning their psychosocial development. Measures developed and normed with typically developing populations may not be appropriate for IDD populations and may result in biased assessment.
AIM
This study aimed to develop and validate modified psychosocial development assessments for adolescents with intellectual and developmental disabilities (IDD), addressing the absence of such assessments.
METHOD
It involved two phases: modifying existing instruments and validating the revised versions. Four stakeholder groups participated: adolescents with IDD, parents, and scholars in adolescent developmental and disabilities. Validation included two groups: neurotypical adolescents completing both measures and IDD adolescents completing modified measures.
RESULTS
Confirmatory factor analyses identified the need to adjust or eliminate scales for better understanding by individuals with IDD. The modified instruments provided suitable measures for assessing psychosocial development in adolescents with IDD.
DISCUSSION
All the scales allowed for accommodation toward comprehension for those with IDD except for identity formation. Further work is needed to understand the challenges associated with assessing identity formation in adolescents with IDD. The active involvement of and participation from adolescents with IDD and their parents in this research was paramount to understanding their comprehension and needs.
CONCLUSION
This study highlights the importance of tailored assessments for accurate measurement of IDD individuals' development, benefiting the assessment of all adolescents.
Topics: Child; Humans; Adolescent; Developmental Disabilities; Disabled Persons; Parents; Personality
PubMed: 37800453
DOI: 10.1002/jad.12262 -
Disability and Health Journal Oct 2023Adolescents with developmental disabilities and their caregivers often seek menstrual management. Caregivers frequently serve as medical decision-makers, and little is...
BACKGROUND
Adolescents with developmental disabilities and their caregivers often seek menstrual management. Caregivers frequently serve as medical decision-makers, and little is known about caregiver goals for menstrual management and satisfaction over time.
OBJECTIVE
Assess caregiver reasons for initiating menstrual management in adolescents with disabilities and satisfaction over 12 months.
METHODS
Prospective cohort study of caregivers of adolescents with developmental disabilities seeking menstrual management at a pediatric and adolescent gynecology clinic. Data derive from caregiver surveys and adolescents' electronic medical records.
RESULTS
Ninety-two caregiver-adolescent pairs enrolled. The mean age of adolescents was 14.4 (±2.6). The most common method started was levonorgestrel intrauterine device (LNG-IUD; 52, 56.5%), followed by oral norethindrone acetate (21, 22.8%). Caregivers cited hygiene concerns (84.8%), behavioral problems (52.2%), and heavy/excessive bleeding (48.9%) as reasons for initiating menstrual suppression. Caregivers who identified hygiene or heavy/excessive bleeding as the most important reason for management were more likely to select LNG-IUD (p = 0.009). Caregivers who cited behavioral/mood or seizure concerns as the most important reason were more likely to choose other methods (p < 0.05). At 12 months, caregiver satisfaction with all methods was high (66.2-86.9 on a 100-point scale). For every additional day of bleeding, satisfaction decreased by 3.7 points (95% CI: 2.3-5.0).
CONCLUSIONS
Caregiver satisfaction with all methods is high; however, it negatively correlates with days of bleeding. Caregiver reasons for menstrual suppression influence the method chosen. Management may reflect both patient and caregiver priorities; research is needed to better understand shared decision-making models that promote reproductive autonomy in adolescents with a developmental disability.
Topics: Adolescent; Female; Humans; Child; Caregivers; Developmental Disabilities; Goals; Prospective Studies; Intrauterine Devices, Medicated; Disabled Persons; Personal Satisfaction
PubMed: 37344273
DOI: 10.1016/j.dhjo.2023.101484 -
Journal of Applied Research in... Nov 2023In the United States, 16 states have adopted Technology First initiatives to improve people with intellectual and developmental disabilities' access to technology.
BACKGROUND
In the United States, 16 states have adopted Technology First initiatives to improve people with intellectual and developmental disabilities' access to technology.
METHOD
Our aim was to examine if Technology First initiatives impact the allocation of technology in Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities. To do so, we analysed HCBS programs from across the United States in fiscal year 2021.
RESULTS
Technology First states were more likely to offer telehealth service delivery in their HCBS programs. However, we found few other significant differences in allocation of technology - the number of people receiving and projected spending - based on states' Technology First status.
CONCLUSIONS
While these findings do not mean that there is no value in Technology First initiatives, it appears these initiatives have yet to truly impact resource allocation when it comes to HCBS.
PubMed: 37482893
DOI: 10.1111/jar.13144 -
Journal of Pediatric Nursing 2024This study was designed to assess the developmental outcomes among preschool-aged children and its associated factors in Palestine.
PURPOSE
This study was designed to assess the developmental outcomes among preschool-aged children and its associated factors in Palestine.
METHODS
A cross-sectional, descriptive-correlational design involved a representative sample of preschool-aged children from kindergarten in Ramallah governorate. Data were collected using the Ages and Stages Questionnaire, Arabic version-3. Associations between developmental delay (DD), parent, child and family characteristics were analyzed utilizing SPSS-25 version.
RESULTS
A total of 249 preschoolers participated in the study. The overall rate of children with Global Developmental Delay (GDD) was 23.7%. The most prevalent DD were in gross motor, personal social, and fine motor skills (25.3%, 17.7%, and 16.5%, respectively). Binary logistic regression analysis revealed that the male gender of a child (OR = 2.66, 95% CI [1.37, 5.19]), the mother's part-time work (OR = 6.01, 95% CI [1.68, 21.52]), low family income (OR = 3.67, 95% CI [1.05, 12.73]), and families with three or more children (OR = 1.43, 95% CI [1.15, 1.781]) were statistically significant independent predictors of GDD.
CONCLUSION
The study findings revealed higher rate of DD among preschoolers in Palestine than regional areas, especially in gross motor, fine motor, and personal social skills, which has consequences for both national and global health. According to the results, factors related to the child, the mother and the family are associated with the cumulative risk of preschoolers having DD.
IMPLICATIONS
It is a crucial role for pediatric nurses to detect DD early and its related risk factors through screening programs to limit the burden of problems in childhood and later adulthood.
Topics: Child; Female; Humans; Male; Child, Preschool; Adult; Developmental Disabilities; Cross-Sectional Studies; Poverty; Risk Factors; Family Characteristics
PubMed: 38035460
DOI: 10.1016/j.pedn.2023.11.023 -
JAMA Pediatrics Apr 2024Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic...
IMPORTANCE
Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with I/DD in the foster care system is critical for identifying disparities and understanding service needs.
OBJECTIVE
To produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex.
DESIGN, SETTING, AND PARTICIPANTS
This cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023.
EXPOSURE
TAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex.
MAIN OUTCOMES AND MEASURES
The period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex.
RESULTS
A total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio [aOR], 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old.
CONCLUSIONS AND RELEVANCE
This study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.
Topics: Child; United States; Humans; Female; Adolescent; Infant, Newborn; Infant; Child, Preschool; Autism Spectrum Disorder; Cross-Sectional Studies; Developmental Disabilities; Medicaid; Foster Home Care; Intellectual Disability
PubMed: 38345807
DOI: 10.1001/jamapediatrics.2023.6580 -
HERD Oct 2023The presented systematic review explores the empirical studies regarding environmental design strategies that support adaptive behaviors while improving problem...
OBJECTIVES
The presented systematic review explores the empirical studies regarding environmental design strategies that support adaptive behaviors while improving problem behaviors of people with intellectual and developmental disabilities (IDD).
BACKGROUND
People with IDD perceive and interact with their environment differently from people without disabilities. Design research has not always considered these differences, and environmental design solutions are not commonly found.
METHODS
The review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocols. The study reports the findings from the systematic review of 32 peer-reviewed studies published in EBSCO, ERIC, ProQuest, PsycINFO, MEDLINE CINAHL, Consumer Health Complete (EBSCOhost), and Psychology and Behavioral Sciences Collection between 1990 and 2020. In addition, quality assessment tools appraised the study's quality.
RESULTS
The review identified 26 design strategies. Five themes qualitatively organized these environmental attributes: coherence, affordance, control, stimulation, and restoration.
CONCLUSION
The evidence indicates that adequately designed physical environments can support the adaptive behaviors of people with IDD while alleviating behavioral problems. Design features not supported by strong empirical evidence should be further addressed in future studies.
Topics: Child; Humans; Developmental Disabilities; Disabled Persons; Intellectual Disability; Problem Behavior
PubMed: 37165644
DOI: 10.1177/19375867231173393 -
Research in Developmental Disabilities Aug 2023Parents of children with developmental disabilities must navigate a complex network to obtain a diagnosis and interventions for their child. However, their subjective...
Barriers and facilitators to accessibility, continuity, validity, flexibility, and provider-family relationship along the diagnostic pathway in developmental disabilities.
BACKGROUND
Parents of children with developmental disabilities must navigate a complex network to obtain a diagnosis and interventions for their child. However, their subjective experience of this journey has yet to be analyzed through the lens of a theorical framework that could support research, organizational program evaluation, and facilitate providers' reflection on how to enhance families' diagnostic services trajectory.
AIMS
This study sought to examine the diagnostic journey as experienced by 77 parents whose children were recently diagnosed with developmental disabilities (e.g., autism, intellectual disability) in the metropolitan area of Montréal, Québec (Canada).
METHODS AND PROCEDURES
A mixed qualitative content analysis approach was used to describe their perspective on barriers and facilitators in reference to the five dimensions of the Evaluation of the Trajectory Autism for Parents (ETAP) model (Rivard et al., 2020): accessibility, continuity, validity, flexibility, and provider-family relationship.
OUTCOMES AND RESULTS
The barriers and facilitators related to systemic factors identified by parents were consistent with the five dimensions outlined by the ETAP model. However, beyond these characteristics of the service delivery system, parents additionally identified their own, personal facilitators CONCLUSIONS AND IMPLICATIONS: This study supports the relevance of the ETAP framework to understanding the experience of families seeking a diagnosis. It also reinforces the potential contributions of this model to organize extant and future research as well as structure program evaluation and improvements.
Topics: Child; Humans; Developmental Disabilities; Parents; Family Relations; Autistic Disorder; Canada
PubMed: 37423052
DOI: 10.1016/j.ridd.2023.104570 -
Journal of Intellectual Disabilities :... Dec 2023The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities...
Examining the Impacts of the COVID-19 Pandemic on Service Providers Working with Children and Youth with Neuro-developmental Disabilities and their Families: Results of a Focus Group Study.
The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and 'burn out', and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.
Topics: Humans; Child; Adolescent; COVID-19; Focus Groups; Pandemics; Developmental Disabilities; Intellectual Disability
PubMed: 35652791
DOI: 10.1177/17446295221104623