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International Journal of Environmental... May 2023Mothers with intellectual and developmental disabilities (IDD) are vulnerable to perinatal complications and adverse outcomes. Their vulnerabilities may also be...
Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide Recommendations for Treatment/Services, Systems, and Research.
Mothers with intellectual and developmental disabilities (IDD) are vulnerable to perinatal complications and adverse outcomes. Their vulnerabilities may also be exacerbated by co-occurring behavioral health (BH) conditions. Their wellbeing may be compromised by a lack of tailored treatments or by treatments and services that are inaccessible, irrelevant, and/or ineffective. A five-session virtual Ideas Lab workshop series was implemented to bring together diverse community experts ( = 30), including mothers with IDD/BH, to discuss the experiences of mothers and set priorities for treatment/services, systems, and research. Participants completed background and evaluation surveys and brainstormed, grouped, and ranked items of importance, which fell into two broad categories: (1) cross-cutting themes drawn from lived experience with recommendations applicable to all substantive domains (i.e., accessibility, diversity, adverse experiences and trauma, and trust) and (2) substantive themes with specific recommendations for treatment/services and systems (i.e., services and supports, peer support, provider practices and training, and systems navigation/transformation). Research recommendations were generated in all discussions and emerged in relation to all themes, underscoring the importance of including mother-driven questions and priorities in research agendas and strengthening researcher training and skills to engage mothers with IDD/BH and other community members actively, and in meaningful ways.
Topics: Female; Pregnancy; Child; Humans; Mothers; Developmental Disabilities; Intellectual Disability
PubMed: 37239601
DOI: 10.3390/ijerph20105876 -
Journal of Developmental and Behavioral... May 2022Children with autism spectrum disorder (ASD) may achieve continence later than other children. Little is known about factors associated with toileting resistance in...
OBJECTIVE
Children with autism spectrum disorder (ASD) may achieve continence later than other children. Little is known about factors associated with toileting resistance in children with ASD and other developmental delays/disabilities (DD). We sought to describe toileting resistance in children with ASD and DD and those from the general population (POP) and identify factors associated with toileting resistance in children with ASD and DD.
METHOD
Families and children aged 24 to 68 months were enrolled in the Study to Explore Early Development, a multisite case-control study on ASD. Children with ASD (N = 743) and DD (N = 766) and those from the POP (N = 693) who were 48 months or older were included in this study. Parents reported toileting resistance, gastrointestinal issues, behavior problems, and ASD symptoms in their children. Children completed an in-person evaluation to determine ASD status and developmental level.
RESULTS
Toileting resistance was more common among children with ASD (49.1%) than children with DD (23.6%) and those from the POP (8.0%). Diarrhea and deficits in social awareness were significantly associated with toileting resistance in children with ASD and DD. Constipation, expressive language delays, and low social motivation were significantly associated with toileting resistance only in children with ASD; very low visual reception skills and oppositional behaviors were significantly associated with toileting resistance in only children with DD (all p ≤ 0.05).
CONCLUSION
Evaluating gastrointestinal issues, developmental delays, and social deficits before toileting training may help identify children with atypical development who are likely to present with toileting resistance. These evaluations can be incorporated into health supervision visits.
Topics: Autism Spectrum Disorder; Case-Control Studies; Child; Child, Preschool; Developmental Disabilities; Health Promotion; Humans; Parents; Problem Behavior
PubMed: 35170572
DOI: 10.1097/DBP.0000000000001036 -
Journal of Developmental and Behavioral... May 2020(1) Report the occurrence of wandering, or leaving a supervised space, among children with confirmed autism spectrum disorder (ASD), other developmental delay (DD) with...
OBJECTIVES
(1) Report the occurrence of wandering, or leaving a supervised space, among children with confirmed autism spectrum disorder (ASD), other developmental delay (DD) with a previous but unconfirmed ASD diagnosis (DDprevASD), DD without a previous ASD diagnosis, and a population comparison group (POP) at an age when wandering is no longer expected and (2) explore whether ASD status is associated with wandering independent of behavioral, developmental, and maternal factors.
METHOD
Parents and children aged 4 to 5 years enrolled in the Study to Explore Early Development Phase-1+2. All children were screened for ASD symptoms upon enrollment. Those with ASD symptoms and/or a previous ASD diagnosis received the Mullen Scales of Early Learning (MSEL) to determine their developmental level and 2 ASD diagnostic tests to determine their ASD status. All other children were evaluated with the MSEL alone. Mothers completed the Child Behavior Checklist/1½-5, which includes an item on whether the child wanders away (categorized as at least sometimes true vs not true) and items assessing behavior problems.
RESULTS
Children with ASD (N = 1195) were significantly more likely to wander than children classified as DDprevASD (N = 230), DD (N = 1199), or POP (N = 1272) (60.4%, 41.3%, 22.3%, and 12.4%, respectively, p < 0.01). ASD status, very low developmental level, and affective, anxiety, attention, and oppositional problems were each independently associated with wandering behavior.
CONCLUSION
Wandering is significantly more common among children with ASD and those with behavioral and developmental problems compared with other children. These findings can be used to increase the awareness of wandering among children with atypical development.
Topics: Autism Spectrum Disorder; Child Behavior; Child, Preschool; Cohort Studies; Developmental Disabilities; Female; Humans; Male; United States; Wandering Behavior
PubMed: 31977588
DOI: 10.1097/DBP.0000000000000780 -
International Journal of Environmental... Mar 2022The COVID-19 pandemic has resulted in substantial service disruption and transition from in-person services to telehealth for children with developmental disabilities....
The COVID-19 pandemic has resulted in substantial service disruption and transition from in-person services to telehealth for children with developmental disabilities. However, there is limited knowledge about the specific dimensions and consequences of the disruption and transition. This study aims to examine the extent of service disruption and transition, the experiences of client children and their caregivers with telehealth vis-à-vis in-person services, and the impacts of the disruption and transition on child wellbeing. The cross-sectional study collected data from parents of children with developmental disabilities using an online survey. McNemar's tests were used to compare service changes before and after the pandemic outbreak, and multivariate analyses were used to examine how service changes were associated with child wellbeing. Results show that more than two-thirds of the children experienced reduction in service amount, and one-third lost services for more than two months in about five months into the pandemic. While telehealth had comparable features relative to in-person services, it had lower ratings with respect to diagnostic accuracy, treatment effectiveness, and rapport building. Service disruption/transition and social isolation were associated with behavioral and emotional deterioration in children. However, child and family stress may have confounded these adverse effects. We concluded that the magnitude of service disruption and transition was large in the first half year after the pandemic outbreak, and the amount and duration of service loss varied substantially across clients. Diagnostic accuracy, treatment efficacy, and rapport building were areas in which parents had major concerns toward telehealth relative to in-person services. However, such drawbacks may partially be due to the limited logistics in telehealth implementation during the pandemic. Service disruption and transition seemed to contribute to family stress, which played a direct role in eroding child wellbeing. Implications of these findings for future research and practices are discussed.
Topics: COVID-19; Child; Child Health; Cross-Sectional Studies; Developmental Disabilities; Humans; Pandemics; Telemedicine
PubMed: 35328947
DOI: 10.3390/ijerph19063259 -
Health Expectations : An International... Oct 2022The application of telehealth in the paediatric setting is growing, and yet, limited research has focused on using telehealth in developmental diagnostic assessment and...
BACKGROUND
The application of telehealth in the paediatric setting is growing, and yet, limited research has focused on using telehealth in developmental diagnostic assessment and the consumers' perceptions of their telehealth experience. This study explored parents'/carers' and staff experiences of using telehealth as part of the developmental diagnostic assessment.
METHODS
Parents/carers who attended an assessment between June 2020 and July 2021 that incorporated a telehealth component within a hybrid service delivery model were invited to provide feedback about their experience of telehealth appointments at a multidisciplinary developmental assessment service. All parents were invited to complete an online survey, with a sample of families being offered a telephone interview. Staff members were invited to a focus group to explore their experiences of delivering services via telehealth. Data obtained were analysed descriptively and thematically using a mixed method of analysis. Codes were categorized, enabling facilitators and barriers to be explored.
RESULTS
The use of telehealth in the diagnostic assessment of complex developmental disorders received high levels of acceptance from parents/carers and staff, despite having limitations such as technical issues, difficulties building rapport between families/clinicians and limited direct observations of the child. Telehealth services are perceived to reduce costs and increase flexibility, including increased ability to accommodate family needs.
CONCLUSIONS
Results demonstrated that telehealth is a highly acceptable mode of service in a developmental assessment service. The current study informs the development of a hybrid service delivery model by enhancing facilitators and reducing barriers commonly reported by consumers and provides direction for future research.
PATIENT OR PUBLIC CONTRIBUTION
Parents or carers of children who attended a tertiary paediatric assessment unit for a diagnostic developmental assessment completed the online survey and were interviewed.
Topics: Child; Humans; Ambulatory Care Facilities; Caregivers; Parents; Surveys and Questionnaires; Telemedicine; Developmental Disabilities; Pediatrics
PubMed: 35978461
DOI: 10.1111/hex.13582 -
Biochimica Et Biophysica Acta.... Apr 2020Stem cells are a sub population of cell types that form the foundation of our body, and have the potential to replicate, replenish and repair limitlessly to maintain the... (Review)
Review
Stem cells are a sub population of cell types that form the foundation of our body, and have the potential to replicate, replenish and repair limitlessly to maintain the tissue and organ homeostasis. Increased lifetime and frequent replication set them vulnerable for both exogenous and endogenous agents-induced DNA damage compared to normal cells. To counter these damages and preserve genetic information, stem cells have evolved with various DNA damage response and repair mechanisms. Furthermore, upon experiencing irreparable DNA damage, stem cells mostly prefer early senescence or apoptosis to avoid the accumulation of damages. However, the failure of these mechanisms leads to various diseases, including cancer. Especially, given the importance of stem cells in early development, DNA repair deficiency in stem cells leads to various disabilities like developmental delay, premature aging, sensitivity to DNA damaging agents, degenerative diseases, etc. In this review, we have summarized the recent update about how DNA repair mechanisms are regulated in stem cells and their association with disease progression and pathogenesis.
Topics: Aging, Premature; Animals; Apoptosis; Cellular Senescence; DNA Damage; DNA Repair; Developmental Disabilities; Humans; Neoplasms
PubMed: 30953688
DOI: 10.1016/j.bbadis.2019.03.017 -
Medical Education Online Dec 2023Despite the rising prevalence of developmental disabilities (DD) in the US, there remains insufficient training for healthcare professionals to care for this medically...
PURPOSE
Despite the rising prevalence of developmental disabilities (DD) in the US, there remains insufficient training for healthcare professionals to care for this medically underserved population - particularly adults. The National Inclusive Curriculum for Health Education (NICHE) aims to improve attitudes and knowledge towards people with intellectual and developmental disabilities (PWIDD); herein we describe one such intervention.
METHOD
The intervention integrated didactic, panel presentation and clinical skills components into a 2 year medical school curriculum. The didactic session, covering health and assessment of PWIDDs, history of IDD, stigma, etc., was co-taught by a developmental pediatrician, family medicine physician and social worker. A panel of 3 adult self-advocates (SAs) with DD and a parent of a child with DD spoke about their lived experiences. One week later, students practiced taking clinical histories of SAs within small group settings with adult PWIDDs, facilitated by medical school faculty. Students completed the NICHE Knowledge(49 items) and Attitudes (60 items) surveys. The evaluation analyzed pre/post intervention differences in a) knowledge and attitude scores overall and b) by student age, gender, intended medical specialty, and prior experiences with PWIDDs. Open-ended comments were analyzed with content analysis.
RESULTS
Overall Knowledge scores increased from pre-to posttest ( = 85; 65[19] vs. 73[17], = 0.00), while Attitudes score improved (i.e., decreased) ( = 88; 0.55 [.06] vs. 0.53 [0.06]); = 0.00). Higher pretest knowledge was found among female identified students (vs. others; = 0.01) and those knowing > = 5 PWIDD (vs < 5; = 0.02). Students characterize their IDD training and experience prior to intervention as 'lacking' and described the sessions as effective.
CONCLUSIONS
A brief (4 hours total) intervention was associated with modest but significant improved knowledge and attitudes towards PWIDDs. Replication and sustainability of this and other NICHE interventions are needed to fill gaps in PWIDDs' health care.
Topics: Adult; Child; Humans; Female; Schools, Medical; Developmental Disabilities; Pilot Projects; Curriculum; Faculty, Medical; Students, Medical
PubMed: 37859424
DOI: 10.1080/10872981.2023.2271224 -
Social Science & Medicine (1982) Jan 2022There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to...
OBJECTIVE
There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to examine whether social network types moderate the impacts of having a child with a developmental disability on parents' health.
METHODS
Using cross-sectional data from the Midlife in the United States survey (MIDUS 2 and Refresher cohorts), we analyzed a sample of 363 parents of children with developmental disabilities and 4,919 parents of children without developmental disabilities. K-means cluster analysis was implemented to identify a social network typology. Modified Poisson and negative binomial regression models estimated the effect of having a child with a developmental disability and the typology on parents' physical health (self-rated health, number of chronic conditions) and mental health (self-rated mental health, major depression).
RESULTS
The cluster analysis revealed two social network types. Parents of children with developmental disabilities were more likely to have "restricted/unsupported" networks, whereas parents in the comparison group were more likely to have "diverse/supported" networks. Social support was more important for differentiating the network types of parents of children with developmental disabilities, while social integration was more salient for the comparison group. Parents of children with developmental disabilities fared worse on all outcomes relative to parents of children without disabilities. However, the typology had a compensatory psychological effect; the diverse/supported network type conferred greater mental health benefits to parents of children with developmental disabilities than to those in the comparison group. The diverse/supported network type was also associated with better physical health, but the associations did not differ between the two parent groups.
CONCLUSIONS
The results of this study emphasize the importance of social determinants of well-being for those with exceptional parenting responsibilities. Strengthening social networks may have a particularly positive impact on such parents' mental health.
Topics: Adult; Child; Cross-Sectional Studies; Developmental Disabilities; Humans; Parenting; Parents; Social Networking; United States
PubMed: 34891030
DOI: 10.1016/j.socscimed.2021.114623 -
Developmental Medicine and Child... Nov 2019The nurturing care framework (NCF) for early childhood development (ECD) launched at the 2018 World Health Assembly opens a range of opportunities and challenges for... (Review)
Review
The nurturing care framework (NCF) for early childhood development (ECD) launched at the 2018 World Health Assembly opens a range of opportunities and challenges for child neurodisability professionals. The United Nations Convention on the Rights of the Child and Convention on the Rights of People with Disabilities frame these pathways for collaboration and progress. This overview of the NCF and its contexts in inclusive ECD identifies avenues for innovation and collaboration in harmony with the field's clinical, scientific, and advocacy agendas. One avenue involves enhancing the alignment between health systems and human rights. A second avenue involves neurodisability professionals engaging with nurturing care as leaders, partners, and implementers. WHAT THIS PAPER ADDS: Participation and leadership by neurodisability professionals can enhance quality and impact. A rights-based framework that includes young children with disabilities and their families is widely encouraged.
Topics: Child; Child Advocacy; Child Development; Child Health Services; Developmental Disabilities; Health Promotion; Humans; Right to Health
PubMed: 30977124
DOI: 10.1111/dmcn.14234 -
Complementary Therapies in Medicine Sep 2020The primary aim of this study was to evaluate differences in the prevalence of complementary and alternative medicine (CAM) usage among children with and without... (Comparative Study)
Comparative Study
OBJECTIVE
The primary aim of this study was to evaluate differences in the prevalence of complementary and alternative medicine (CAM) usage among children with and without developmental disabilities (DD). Secondarily, the association between CAM usage and comorbid chronic medical conditions was explored among children with DD.
DESIGN
Data come from the 2012 Child Complementary and Alternative Medicine Supplement of the National Health Interview Survey, a nationally representative sample of children in the United States between the ages of 4 and 17 (n = 10,218).Main outcome measures Multiple logistical regression models provided insight into the relationships between parent-report CAM usage, DD, and chronic medical conditions.
RESULTS
Children with developmental disabilities were more likely to use CAMs compared to their typically developing peers (21% vs 16%). Children with DDs and comorbid chronic medical conditions used CAMs at even higher rates (23% vs 18%).
CONCLUSIONS
Results indicated that children with DD, especially those with a co-occurring chronic medical condition, use CAMs more often that typically developing children. Given scarcity of information on safety and effectiveness, clinical providers need to be alert to which children may be more likely to be exposed to CAMs. Communication between parents and providers needs to include discussion of CAM treatments.
Topics: Adolescent; Child; Child, Preschool; Chronic Disease; Comorbidity; Complementary Therapies; Developmental Disabilities; Disabled Children; Female; Humans; Male; Prevalence; United States
PubMed: 33066848
DOI: 10.1016/j.ctim.2020.102527