Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

[Being born moderately premature: a risky developmental trajectory]. / Naître moyennement prématuré : une trajectoire développementale à risque.

Babies born prematurely are frequently prone to developmental disorders, which are all the more severe in babies of low gestational age. However, medium prematurity also generates its own set of difficulties, including sensory, motor, cognitive, behavioral, relational and emotional disorders. It is essential to gain a better understanding of the developmental trajectory of these children and its various ups and downs, in order to support their development as early as possible.

Improving Quality of Life and Reducing Behavioral Problems of People With Intellectual and Developmental Disabilities Through Deinstitutionalization.

ANTECEDENTS: People with intellectual and developmental disability (IDD) with extensive support needs are more likely to live in segregated and highly institutionalized environments. The aim of this study was to analyze changes in functioning and quality of life for people with IDD and extensive support needs after transitioning to ordinary homes in the community. METHOD: The sample included 54 adults with IDD and extensive support needs, who were assessed at three time points: before transition, six months later, and one year after transition. The Resident Choice Scale, San Martin Quality of Life Scale, Active Support Participation Measure, and the Behavior Problem section of the Inventory for Client and Agency Planning were administered. Partial least squares-structural equation modeling (PLS-SEM) and t-tests for repeated measures were carried out. RESULTS: There were significant improvements in decision-making, participation and independence in daily activities and quality of life, as well as a reduction in the presence and intensity of behavioral problems. CONCLUSIONS: The benefits found in this study support transformation processes towards more inclusive services and professional practices that foster people's rights and feeling of belonging to the community.

Positive family connections for families of children with a developmental disability: Cluster randomized controlled trial.

Positive Family Connections is a coproduced, positively oriented, family-systems program for families of children with a developmental disability aged 8-13 years. The study was a feasibility cluster randomized-controlled trial which was registered prospectively (International Standard Randomised Controlled Trial Number 14809884). Families (clusters) were randomized 1:1 to take part in Positive Family Connections immediately or to a waitlist condition and were followed up 4 months and 9 months after randomization. Feasibility outcomes included participant and facilitator recruitment rates, retention, intervention adherence, and fidelity. The proposed primary outcome measure was the family APGAR, a measure of family functioning. Quantitative data were analyzed using multilevel modeling. Sixty families (60 primary parental carers and 13 second carers) were randomized. 73.33% of primary parental carers and 71.43% of second carers in the intervention group attended ≥ 4 intervention sessions, and fidelity of delivery was high (M = 94.02% intervention components delivered). Retention for the proposed primary outcome was 97.26% at 4-month follow-up and 98.63% at 9-month follow-up. Intervention condition was not associated with family APGAR scores at 9-month follow-up (estimate = 0.06, 95% CI [-0.49, 0.61], p = .86, Hedges' g = 0.03, 95% CI [-0.43, 0.49]). However, meaningful improvements were observed for other secondary outcomes related to parental well-being and family relationships. A definitive randomized-controlled trial of Positive Family Connections is feasible. Preliminary evaluation of outcomes shows that Positive Family Connections may be beneficial for parental psychological well-being and family relationships. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

"She Couldn't Say the Word Penis": Experiences of 2SLGBTQ+ People with Developmental and Intellectual Disabilities with Sex Education in Alberta, Canada.

This exploratory qualitative study sought to better understand the experiences of Two-Spirit, lesbian, gay, bisexual, transgender, queer (2SLGBTQ+) disabled people when learning about sexuality, sexual orientation, and gender identity. We conducted 31 semi-structured, in-depth interviews with adults labeled/with developmental and intellectual disabilities in Alberta, Canada. Findings showed a significant lack of comprehensive sex education available to 2SLGBTQ+ disabled people. Sexual and gender identities were rarely discussed in formal school-based education settings and most parents and caregivers did not feel comfortable addressing these topics either. As a result, many participants had to do their own research and use other sources for information and advice. Participants then provided recommendations in terms of what they wish they had learned in sex education as well as potentially effective ways of delivering that content to disabled people.

Identifying a failure-to-thrive fraternal twin profile with 3q29 deletion syndrome.

In 2005, the 3q29 deletion syndrome was identified and defined as a rare chromosomal anomaly that effects approximately one in 30,000-40,000 children. It has a complex neuropsychiatric profile, often resulting in developmental delays, intellectual disabilities, attentional deficits, classic physical traits, and behavioral health disturbances, including social and emotional issues. Rarely has this syndrome been seen and evaluated in fraternal twins, only one of whom has the 3q29 deletion syndrome. This case study highlights Twin 1's strengths and weaknesses and compares her 2020 neuropsychological data, including a comparison of her Reitan-Indiana Neuropsychological Battery (RINB) results to her 2022 profile, which reveals a failure-to-thrive profile.

Psychosocial development measures modification for adolescents with intellectual and developmental disabilities.

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.

A Paradigm for Improving Transition Planning for Adolescents With Intellectual Developmental Disorder.

Families of children with intellectual and developmental disorder (IDD) face unique challenges while navigating the transition into adulthood, such as finding suitable housing, optimizing independence, fostering meaningful relationships, and identifying a vocation.1-3 Often, the daily struggles of managing the individual's needs overshadow essential long-term preparation. Individuals with IDD and their families need guidance to transition from an entitlement-driven system (special education) to multiple eligibility-driven systems (adult care, postsecondary education services, housing supports, etc). The majority of those currently involved in transition planning are school personnel, followed closely by family members. Few of these planning meetings include the individuals themselves or personnel from outside agencies, such as social services and mental health.2 The complexity of these systems marginalizes this population by creating barriers to accessing necessary support. This is where psychiatrists, especially child and adolescent psychiatrists, can create a bridge.

The role of thriving in mental health among people with intellectual and developmental disabilities during the COVID-19 pandemic in Canada.

BACKGROUND: The COVID-19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic-related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The current study examined the associations among COVID-19 stressors, thriving, and mental health problems among youth and adults with intellectual and developmental disabilities. METHOD: Caregivers of 159 people with intellectual and developmental disabilities between 12 and 35 years of age from Canada completed an online questionnaire. RESULTS: A mediation analysis revealed that COVID-19 stressors were positively associated with mental health problems, and that thriving partially mediated this association. CONCLUSION: Our findings suggest that experiences of thriving may be an important target for mental health support for people with intellectual and developmental disabilities.

Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19.

BACKGROUND: Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19. OBJECTIVE: The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic. METHODS: A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic. RESULTS: Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048). CONCLUSIONS: Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

Post-COVID-19 condition risk in patients with intellectual and developmental disabilities: a retrospective cohort study involving 36,308 patients.

BACKGROUND: To date, no studies have investigated the prevalence of post-COVID-19 conditions in patients with Intellectual and Developmental Disabilities (IDD). Addressing this research gap is crucial, as understanding post-COVID-19 conditions in IDD patients can improve care planning, and it is essential not to overlook this vulnerable population in COVID-19 studies. This study was aimed at investigating the prevalence of post-COVID-19 conditions in patients with IDD and compare their risk with that of the general population. METHODS: Using the TriNetX network, we identified patients with and without an IDD who had COVID-19. Subsequently, we compared the risk of developing any post-COVID-19 condition between these two groups, during the 90-180-day follow-up after SARS-CoV-2 infection. RESULTS: During the follow-up, patients with an IDD exhibited a significantly higher prevalence of post-COVID-19 conditions compared to the general population (hazard ratio [HR], 1.120; 95% confidence interval [CI]: 1.053-1.191). Specifically, COVID-19 survivors with IDD had a significantly increased risk of experiencing abnormal breathing (HR, 1.216; 95% CI: 1.077-1.373), abdominal symptoms (HR, 1.259; 95% CI: 1.128-1.406), fatigue (HR, 1.397; 95% CI: 1.216-1.606), anxiety/depression (HR, 1.157; 95% CI: 1.050-1.274), cognitive symptoms (HR, 1.828; 95% CI: 1.529-2.186), myalgia (HR, 1.325; 95% CI: 1.077-1.631), sleep disturbances (HR, 1.481; 95% CI: 1.148-1.910), and cough (HR, 1.315; 95% CI: 1.146-1.508) compared to the non-IDD group. CONCLUSIONS: Patients with IDD might be associated with a higher risk of post-COVID-19 conditions following SARS-CoV-2 infection compared to the general population.

'Being a part of something': Experiences and perceived benefits of young adult peer mentors with intellectual/developmental disabilities and co-occurring mental health conditions.

BACKGROUND: Peer-provided services are a common model for addressing mental health concerns. Peer providers report a range of benefits and challenges associated with their role. However, there is little information about the experiences of peer providers with intellectual/developmental disabilities. AIM: To explore the experiences of young adult peer-providers with intellectual/developmental disabilities in the context of a mental health intervention. METHODS: We conducted interviews with four young adults with intellectual/developmental disabilities and their parents and teachers to understand their experiences providing a peer mentoring mental health intervention. RESULTS: Young adult peer mentors perceived themselves as responsible for maintaining the mentoring relationship, delivering the intervention and acting as helpers and independent professionals. The experiences of young adult peer mentors were driven by the temporal, institutional and social contexts of their work. Peer mentoring was an enjoyable, social activity. Mentors, parents and teachers emphasised how taking on the peer mentoring role during the transition to adulthood and within the capital-rich university context led to a sense of pride and professional development. Further, these contexts may have led mentors to emphasise their intervention-delivery, helper and professional roles over relationship maintenance. DISCUSSION & CONCLUSION: Context may shape the perceived roles and benefits for young adult peer mentors with intellectual/developmental disabilities.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

BACKGROUND: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. METHODS: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. RESULTS: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. CONCLUSIONS: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

Technology for supporting emotion regulation of individuals with developmental disabilities: A scoping review.

BACKGROUND: Emotional competencies are skills necessary to adequately understand, express, and regulate emotional phenomena. Among the emotional competencies is emotion regulation. Not having adequate development of this emotional competence is related to psychological problems such as depression. One of the characteristics of individuals with developmental disabilities is the presence of difficulties with emotion regulation. These difficulties can affect an individual's autonomy, social competence, and the development of independent life. AIMS: This paper presents a scoping review to identify the technology designed and developed to support the emotion regulation of individuals with developmental disabilities. METHODS AND PROCEDURES: We combined the guidelines for a systematic literature review in computer science and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology. The process resulted in twelve stages through which we conducted this scoping review. First, a search query was defined and executed in computer science's five most representative search engines. We used different inclusion, exclusion, and quality criteria for selecting the works included in this review. OUTCOMES AND RESULTS: Thirty-nine papers aimed at supporting the emotional competencies of individuals with developmental disabilities were included, of which nine support emotion regulation. As a result, different areas of opportunity in developing technology to support the emotion regulation of individuals with developmental disabilities are discussed. CONCLUSIONS AND IMPLICATIONS: Technology supporting emotion regulation in individuals with developmental disabilities is a growing but little-explored field. For the literature supporting emotion regulation, we detected opportunities for study. Some of them aimed at investigating whether we could use technologies developed for other emotional competencies to support emotion regulation and how the characteristics of this technology can support individuals with developmental disabilities.

Comparing sensory processing in children with Down syndrome to a mental age matched sample of children with autism, other developmental disabilities, and typically developing children.

BACKGROUND: Atypical sensory processing impacts children with intellectual and developmental disabilities (IDD). Research has focused on SP in individuals with autism spectrum disorder (ASD); comparatively, little has been written regarding individuals with Down syndrome (DS) and IDDs. AIMS: We compared patterns of sensory processing in children with DS to children with ASD, other IDDs, and typically developing (TD) peers examining the relationship among different sensory processing measures. METHODS AND PROCEDURES: We analyzed cross-sectional data using two caregiver questionnaires (SP, SEQ) and one observational measure (SPA). Groups were compared on three sensory processing patterns: hyporesponsiveness; hyperresponsiveness; and sensory interests, repetitions, and seeking (SIRS) via ANOVA. We assessed concordance through correlations. OUTCOMES AND RESULTS: Children with DS, IDD, and ASD demonstrated more atypical sensory processing behaviors than TD peers. Children with ASD exhibited the most atypical responses across all measures, significantly more than DS children on all but one subscale. The IDD and DS groups differed on several measures. Measurement concordance was higher between caregiver-report versus observational assessment. CONCLUSIONS AND IMPLICATIONS: Differences between three clinical groups indicate that sensory processing features may differ across clinical populations regardless of cognitive functioning. Lower concordance between caregiver-report and observation measures highlights the need to understand sensory processing expression across different tasks and environments.

Mental Health Concerns in Individuals With Developmental Disabilities: Improving Mental Health Literacy Trainings for Caregivers.

Although approximately a third of individuals with intellectual and developmental disabilities (IDD) also experience a mental health concern, caregivers often miss early identification of these issues. In this perspective piece, we present an outline for a mental health literacy program that can enhance existing training approaches for caregivers of individuals with IDD. We describe three processes of the Mental Health Awareness and Advocacy (MHAA) curriculum and detail how it provides a strong preventative model to train caregivers to increase their mental health literacy. In describing these processes, we provide illustrative examples and conclude by providing a brief vignette that highlights how this process could be used by caregivers to help reduce mental health concerns in individuals with IDD.

Subjective Poverty Moderates the Association Between Carer Status and Psychological Outcomes of Adult Siblings of People with Intellectual and Developmental Disabilities.

Adult siblings are potentially important sources of care, support, advocacy, and friendship for their brothers and sisters with intellectual and developmental disabilities (IDD). Drawing on data about 851 adult siblings who completed an online national survey, we examined predictors and potential key moderators of siblings' mental distress, wellbeing, quality of life, and health outcomes. Moderated regression analyses indicated that siblings experiencing higher levels of subjective poverty; siblings with brothers and sisters with lower levels of independence; and siblings who are carers and also experiencing low levels of subjective poverty, had worse outcomes and may be in need of specific supports. Compared to normative samples, adult siblings of people with IDD had worse outcomes across the measures.

Health-related quality of life among mothers of children with cochlear implants with and without developmental disabilities.

BACKGROUND: Cochlear implants (CIs) are widely used among children with severe to profound hearing loss. Raising a child with a CI presents unique challenges to the family, especially when the child has a developmental disability (CI-DD). AIMS: This study aimed to elucidate the relations between the functioning of children with CIs, their mothers' coping resources (i.e., social support and family-centered care), and maternal health-related quality of life (HRQoL). Also, it examined whether the presence of a DD in addition to the child's deafness moderated these relations. METHODS AND PROCEDURES: A sample of 100 mothers of children with CIs (54 in the CI-DD group) completed questionnaires regarding perceived social support, family-centered care, and HRQoL. OUTCOMES AND RESULTS: Mothers of deaf children with CIs and DD experienced lower levels of family functioning and HRQoL across all dimensions compared to mothers of deaf children with CIs without DD. In addition, social support was positively related to HRQoL only among mothers of children in the CI-DD group, indicating the protective role of social support. CONCLUSIONS AND IMPLICATIONS: Social support is an important coping resource, and psychosocial support is needed for mothers of children with CIs, especially for mothers whose children also have a DD.

Timeliness of Early Identification and Referral of Infants with Social and Environmental Risks.

The Early Intervention Parenting Partnerships (EIPP) program is a home visiting program that provides home visits, group services, assessments and screenings, and referrals delivered by a multidisciplinary team to expectant parents and families with infants who experience socioeconomic barriers, emotional and behavioral health challenges, or other stressors. The present study examines whether EIPP successfully meets its aims of screening families for social and environmental factors that may increase the risk of children's developmental delays and connect them to the larger statewide early intervention (EI) system relative to families with similar background characteristics who do not receive EIPP. Coarsened exact matching was used to match EIPP participants who enrolled between 2013 and 2017 to a comparison group of families identified from birth certificates. Primary study outcomes including EI referrals, evaluations, and service receipt for children from 3 months to 3 years were measured using EI program data. Secondary outcomes included EI referral source, EI eligibility criteria (e.g., presence of biological, social, or environmental factors that may increase later risk for developmental delay), and information on service use. Impacts were assessed by fitting weighted regression models adjusted for preterm birth and maternal depression and substance use. EIPP participants were more likely than the comparison group to be referred to, evaluated for, and receive EI services. EIPP facilitated the identification of EI-eligible children who are at risk for developmental delays due to social or environmental factors, such as violence and substance use in the home, child protective services involvement, high levels of parenting stress, and parent chronic illness or disability. EIPP serves as an entry point into the EI system, helping families attain the comprehensive supports they may need to optimize their well-being and enhance children's development.