Self-Advocate and Family Member Experiences With Supported Decision Making.

Supported decision making (SDM) is a needed focus of policy and practice to enhance opportunities for people with disabilities to exercise self-determination as they are supported to make decisions about their life. This study used content analysis to analyze five focus groups comprised of 27 adults with intellectual and developmental disabilities (IDD) and 16 family members to understand how people with IDD use supports for decision making and how families support decision making. People with IDD and family members described a range of strategies and supports they used for decision making, including engaging trusted supporters, accessing technology, and using early experiences to build decision-making skills. Findings from this research can inform development of practices and policy to enhance use of SDM in research, policy, and practice.

Paths of cognitive and social-emotional delays before age three in rural China: Predictive power on skills at preschool age.

Cognitive and social-emotional development in the first three years of life is associated with later skills. However, little is known about the paths of developmental delays in both cognitive and social-emotional skills before age 3 or to what extent these paths predict later developmental outcomes. The aim of this study is to examine the associations between the different paths of developmental delays in both cognitive and social-emotional skills of children before age 3 and the levels of development of the children when they are preschool age. Using a longitudinal data collected at three time points from 1245 children and their caregivers in rural China, we identified four different paths of developmental delays in cognitive and social-emotional before age 3 and examined how these paths are associated with different levels of developmental outcomes at preschool age. We used a non-parametric standardization approach and an ordinary least squares model to perform our analyses. Findings show that rates of developmental delays in either cognitive or social-emotional domain or both domains are high at all different time points, ranging from 20% to 55% for cognitive delays and 42% to 61% for social-emotional delays. Over half of children experienced deteriorating levels of either cognitive or social-emotional development before age 3. A large share of children was found to be persistently delayed in either domain. Only a small share of children raised their levels of development in either domain before age 3. In addition, we identified certain socioeconomic status of the family that are associated with never or deteriorating path of child developmental delays. More importantly, we revealed that different paths of developmental delays before age 3 have predictive power on different levels of developmental outcomes at preschool age. Our results suggest that actions are needed at the earliest times to improve child development when children are still infants or toddlers.

Caregivers' perspectives of early developmental tele-assessments in challenging circumstances.

BACKGROUND:  Outbreaks, such as the COVID-19 pandemic in 2020, exacerbate barriers to accessing early childhood developmental care. Tele-assessment may serve as an innovative approach to developmental monitoring to overcome service delivery amidst challenging circumstances. It is vital to collect caregivers' perspectives of this potential service delivery method to inform clinical decision making. OBJECTIVES:  This study aimed to determine caregivers' perspectives of interview-based early developmental tele-assessment in a South African context. METHOD:  Thirty caregivers of children (aged birth - 36 months) completed a caregiver-report developmental assessment via a telecommunications platform, as well as an online questionnaire probing their perspectives on the tele-assessment. RESULTS:  Most participants (96.7%, n = 29 out of 30) rated their overall experience of the tele-assessment as positive; however, 53.8% (n = 14 out of 26 that answered the question) indicated that they would additionally still prefer in-person assessment. CONCLUSION:  Tele-assessment appears to be a viable approach for caregivers to access developmental care during circumstances such as COVID-19.Contribution: This study provided valuable insight into a novel approach using interview-based early developmental tele-assessment and the perspectives of caregivers thereof.

Predictors of health-related quality of life (HRQoL) for caregivers of children with developmental disabilities in Saudi Arabia: An observational study.

To examine predictors of health-related quality of life (HRQoL) for caregivers of children with developmental disabilities, a cross-sectional design was used. Participants were primary caregivers of children with developmental disabilities. Caregivers completed a demographic form about the child and the family, and the Arabic version of Patient-Reported Outcomes Measurement Information System-Profile 29 (PROMIS-29 v2.0). Descriptive statistics were used to report on demographic data, 1-sample Z tests to compare PROMIS domain scores with the general population, and multiple linear regression analyses to identify predictors of each domain. Participants were 111 primary caregivers, mostly mothers (65.8%). Caregivers reported higher levels of anxiety, depression, fatigue, sleep disturbance, and pain interference, and lower levels of physical function and social participation compared to the general population, P < .05. The regression models for predicting the HRQoL accounted for 12.3% of the variance in the physical function domain (P = .016), 13.9% in the anxiety domain (P = .009), 24.7% in the ability to engage in social activities and roles (P < .001), and 11.4% in the pain interference domain (P = .02). In these models, the severity of the child's disability and/or the child's age were common significant predictors. Specifically, child's age was the only significant predictor in 2 domains, the anxiety domain (ß = -.29, P < .01) and ability to participate in social activities and roles domain (ß = .42, P < .05). The severity of the child's disability was the only significant predictor in the physical function domain (ß = -.52, P < .01). Both the severity of the child's disability and the child's age were significant predictors in the pain interference model (ß = .40, P < .05), and (ß = -.23, P < .05), respectively. However, the models did not significantly predict depression, fatigue, or sleep disturbance, P > .05. HRQoL is a complex construct and is influenced by multiple child and family factors. Implications of the study emphasize the importance of regular HRQoL screening for caregivers, the development of efficient referral systems for support services, and the exploration of respite care options.

Disseminating the F-Words for Child Development to Parents of Children With Developmental Disabilities in Iran: A Qualitative Pilot Feasibility Study.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

Child and Family Predictors for Mastery Motivation in Children With Developmental Delays.

Motivation is a key factor for child development, but very few studies have examined child and family predictors of both child task and perceived motivation. Thus, the three aims of this 6-month longitudinal study in preschoolers with global developmental delays (GDD) were to explore: 1) differences between task and perceived motivation in cognitive domain; 2) differences among three domains of perceived motivation: cognitive, gross motor, and social; and 3) early child and family predictors of cognitive task motivation and the three domains of perceived motivation 6 months later. Results indicated that preschoolers with GDD showed higher cognitive task motivation than cognitive perceived motivation, and lower perceived cognitive motivation than the other two perceived motivation domains. Different child and family factors predicted cognitive task motivation and the three domains of perceived motivation. Practitioners should educate caregivers on how to observe children's motivation to enhance children's active participation.

Motivation in caregiving among mothers of children with intellectual and developmental disabilities in Iran: A qualitative study.

BACKGROUND: The motivation of caregivers plays a crucial role in the treatment, follow-up, and care of children with intellectual and developmental disabilities. Previous studies have focused on the older people and end-stage diseases, while giving less attention to the motivation of mothers caring for children with special needs. This study aimed to explore the motivations of mothers caring for children with intellectual and developmental disabilities in Iran. METHODS: This study employed a qualitative approach, guided by the Self-Determination Theory. Purposeful sampling was initially used, followed by theoretical sampling until data saturation was achieved. Data were collected through semi-structured interviews with 26 mothers of children with intellectual and developmental disabilities. Mayring's seven-step directed content analysis approach was utilized for coding and categorization. The research adhered to ethical standards and ensured data trustworthiness through credibility, dependability, confirmability, and transferability measures. RESULTS: The findings revealed that mothers' caregiving motivations could be classified into four main categories: (I) intrinsic, (II) identified-extrinsic, (III) introjected-extrinsic, and (IV) external-extrinsic. Additionally, twelve sub-categories were identified within these four main categories. CONCLUSION: The findings revealed that mothers demonstrated varying levels of intrinsic and extrinsic motivations in caring for children with intellectual and developmental disabilities. By recognizing and enhancing the diverse sources of motivation, healthcare providers and policymakers can better support mothers in their caregiving roles, ultimately contributing to improved outcomes for both the mothers and their children.

Time in childhood extracurricular activity and mental health of young adults with developmental disability.

BACKGROUND: People with developmental disability have higher rates of mental health problems such as anxiety, depression, psychological distress, or a limited sense of belonging to a community. Extracurricular activity can help children and adolescents build social connections beyond family, increasing social capital, which may promote mental health in the transition into adulthood. Little is known about such associations among people with developmental disability. OBJECTIVE: To examine associations of childhood extracurricular activity with mental health in young adulthood among people with and without developmental disability. METHODS: Data: Panel Study of Income Dynamics (PSID, 1968-2017), its Child Development Supplement (1997, 2002, 2007) and its Transition into Adulthood Supplement (2005-2019) (n = 2801). Time diaries measured time in activity. Outcomes were psychological distress (Kessler K6) and flourishing (Mental Health Continuum-Short Form). Adjusted linear regressions modeled associations. RESULTS: In nationally representative results, 9.6 % (95 % confidence interval, CI 7.8, 11.4) had a disability. Children without disability reported more average weekly time in group activity, 125.1 min (CI 113.2, 136.9) vs. 93.6 (CI 55.1, 132.0; not significant at conventional levels). In adjusted results, "some" group activity (0-180 weekly minutes) was associated with greater flourishing for those with developmental disability (0.89; CI 0.16, 1.61). CONCLUSION: Among people with developmental disability, group activity in childhood was associated with greater flourishing in young adulthood. More research is needed to understand the complex nature of activity participation for children with developmental disabilities.

Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

College Students With Intellectual and Developmental Disabilities' Experiences, Conception, and Development of Emotional Wellness.

This study aimed to understand the ways in which college students with intellectual and developmental disabilities (IDD) experience and develop their understanding of emotions and emotional wellness. Semi-structured interviews with college students with IDD were conducted. The research team utilized consensual qualitative research (CQR) to analyze interviews and came to consensus in generating domains, core ideas, and a cross-analysis to answer the research question, "What are the experiences of college students with IDD in developing an understanding of emotions and emotional wellness?" Findings suggest college students with IDD have experience developing and maintaining their emotional wellness, though they may experience barriers prior to and during college enrollment. Limitations and implications for future research are discussed.

Analyzing the Psychometric Properties of Infant (0-24 Months) Developmental Assessments: A Scoping Review.

PURPOSE: To assess the psychometric properties of available developmental assessments for infants, aged 0-24 months. METHODS: A scoping review was conducted using the PRISMA Extension for Scoping Reviews as a guideline. The following four databases: Medline, CINAHL, Embase, and Web of Science were used to retrieve articles. Assessments were analyzed for psychometric properties of reliability and validity. Results: Fifteen developmental assessments were identified and evaluated based on their psychometric properties from 20 number of articles. RESULTS: Three assessments including Bayley Scales of Infant and Toddler Development 3rd Edition (BSID-III), Caregiver Reported Early Development Instruments (CREDI), and Ages and Stages Questionnaire 3rd Edition (ASQ-3), were identified to have the most supporting evidence. CONCLUSION: This study provided clinicians with an updated list of all-encompassing infant developmental assessments. Certain assessments require additional evidence regarding their psychometric properties to substantiate their clinical utility.

Infant and Early Childhood Mental Health (IECMH) and Early Childhood Intervention: Intentional Integration.

Infant and Early Childhood Mental Health (IECMH) is a multidisciplinary field of inquiry, practice, and policy concerned with enhancing the social-emotional competence of infants and young children. Early Childhood Intervention (ECI) is a system of services that supports infants and toddlers with disabilities and their families. ECI providers promote a child's development in all domains, including social-emotional. The purpose of this paper is to describe how two systems, Early Childhood Intervention and Infant Early Childhood Mental Health, collaborate when serving children who have developmental delays or disabilities and their families and other caregivers. We will discuss two models used to promote social-emotional development, the Pyramid Model and IECMH Consultation, and provide three examples that demonstrate how ECI and IECMH intersect at both the family, classroom, and system levels.

Early motor, cognitive, language, behavioural and social emotional development in infants and young boys with Duchenne Muscular Dystrophy- A systematic review.

Duchenne Muscular Dystrophy (DMD) is an X-linked recessive disorder caused by mutations in the dystrophin gene. Deficiency of the dystrophin protein causes not only motor, but also cognitive, language, behavioural and social emotional problems. This is the first systematic review investigating five early developmental domains in boys with DMD between 0 and 6 years old. Interactions between different domains and links with mutation types and sites were explored. A systematic search was performed in PubMed, Web of Science and Scopus. An adapted version of the Scottish Intercollegiate Guidelines Network (SIGN) Checklists for case-control and cohort studies was used to evaluate quality. Fifty-five studies of high or acceptable quality were included. One was an RCT of level 1b; 50 were cohort studies of level 2b; and four were an aggregation of case-control and cohort studies receiving levels 2b and 3b. We found that young boys with DMD experienced problems in all five developmental domains, with significant interactions between these. Several studies also showed relationships between mutation sites and outcomes. We conclude that DMD is not only characterised by motor problems but by a more global developmental delay with a large variability between boys. Our results emphasise the need for harmonisation in evaluation and follow-up of young boys with DMD. More high-quality research is needed on the different early developmental domains in young DMD to facilitate early detection of difficulties and identification of associated early intervention strategies.

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.

Reinforcer value moderates response magnitude and persistence during extinction: A randomized trial.

Extinction bursts, or temporary increases in rates and intensities of behavior during extinction, can preclude the inclusion of extinction in intervention packages meant to suppress severe challenging behavior. To identify underlying behavioral mechanisms responsible for response persistence and bursting, 69 adults with developmental disabilities completed a low-stakes translational investigation employing a 2 × 2 factorial, crossed, and randomized matched blocks design, with batched randomization logic. In each of the four test groups, we made distinct antecedent manipulations with two value parameters commonly studied through behavioral economics (i.e., demand intensity, Pmax) and evaluated the extent to which each of these manipulations influenced target responding during extinction. Although we found statistically significant differences attributable to both parameters, variations in reinforcer consumption relative to demand intensity were most influential across all dependent variables. This outcome implicates consumption relative to demand intensity as both a mitigating and exacerbating preextinction factor that influences the prevalence of adverse collateral extinction effects (e.g., bursts).

[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.

From a concept to a theory: The six eras of quality of life research and application.

This article describes the evolution of the quality of life concept through the lens of six distinct eras. Each era reflects a shared process in which multiple stakeholders, including persons with intellectual and developmental disabilities and researchers, have played a significant role. Across these six eras, research on quality of life has evolved from operationalizing a concept to developing a theory. As described in the article, the first three eras resulted in formulating conceptualization, measurement, and application principles; developing quality of life conceptual and operational models; and constructing reliable and valid instruments to assess quality of life domains or domain-referenced indicators. The application era has focused on applying the concept of quality of life and its measurement, supports provision, conceptualization and theory, and systemic change. The final two eras have involved theory development and theory confirmation.

A capacity-building intervention for parents of children with disabilities in rural South India.

BACKGROUND: A disability service organization piloted a parent capacity-building intervention for parents of children with developmental disabilities in rural South India. AIMS: To examine the impact of this parent capacity-building group intervention on parent empowerment, peer support, social inclusion, advocacy skills, and the factors influencing these outcomes. METHODS AND PROCEDURES: A qualitative study recruited 37 participants from 17 parent groups through convenience sampling. Six focus groups occurred six months post the start of this intervention and explored these parents' experiences with the groups and their perceived impacts. OUTCOMES AND RESULTS: Qualitative analysis yielded four main themes and corresponding sub-themes: peer support (feeling peaceful and supported, building self-efficacy), social inclusion (space to share, acceptance and identity), knowledge sharing (increasing awareness, accepting advice), and advocacy (building confidence, making requests). Participation in parent groups provided participants with opportunities to find peer support, utilize knowledge sharing, feel socially included, and build advocacy skills. CONCLUSIONS AND IMPLICATIONS: This study provides a greater understanding of the impact and benefits of parent capacity-building interventions in low-resource settings. Results will improve this intervention and guide other organizations in creating similar programs. WHAT THIS PAPER ADDS: This paper adds perspectives of parents who are caregivers of children with developmental disabilities in rural South India. More specifically, this paper highlights the impact of a parent-focused intervention in group settings in both rural and urban areas. Parent support group interventions are not common in India and low- and middle-income countries and there is a paucity of literature describing these interventions and their impact. In this study, parents described a need for multifaceted interventions to support their child in the community. These parent groups provided space for caregivers of children with developmental disabilities to make connections, feel validated, and grow confidence to utilize new knowledge or advice shared by other parents to further enhance their lives. Further, parent-group settings provide opportunities to build advocacy skills through timely discussions. Parents reported an increase in feelings of acceptance within the group itself but not within the wider community. This highlights the need for involving the wider community in interventions to promote integration for families with children with disabilities.

Expectations, needs and mid-term outcomes in people accessing to secondary findings from ES: 1st French mixed study (FIND Study).

Generation and subsequently accessibility of secondary findings (SF) in diagnostic practice is a subject of debate around the world and particularly in Europe. The French FIND study has been set up to assess patient/parent expectations regarding SF from exome sequencing (ES) and to collect their real-life experience until 1 year after the delivery of results. 340 patients who had ES for undiagnosed developmental disorders were included in this multicenter mixed study (quantitative N = 340; qualitative N = 26). Three groups of actionable SF were rendered: predisposition to late-onset actionable diseases; genetic counseling; pharmacogenomics. Participants expressed strong interest in obtaining SF and a high satisfaction level when a SF is reported. The medical actionability of the SF reinforced parents' sense of taking action for their child and was seen as an opportunity. While we observed no serious psychological concerns, we showed that these results could have psychological consequences, in particular for late-onset actionable diseases SF, within families already dealing with rare diseases. This study shows that participants remain in favor of accessing SF despite the potential psychological, care, and lifestyle impacts, which are difficult to anticipate. The establishment of a management protocol, including the support of a multidisciplinary team, would be necessary if national policy allows the reporting of these data.

Conceptual Model of Effective Parenting Strategies for Mother with Children Who Experience Developmental Disorders.

AIM: Prior studies on Japanese parents raising children with developmental disorders have predominantly emphasized negative psychological aspects like parenting conflicts and challenges. Purpose of this study was to construct a conceptual model to aid mothers in parenting children with developmental disorders by identifying effective parenting strategies. METHODS: In this qualitative study, participants were mothers who engaged in a home program through individual outpatient occupational therapy. Therapy sessions occurred biweekly, totaling 12 sessions, each lasting 40 min. Data collection involved semi-structured interviews, and the data were analyzed through the Modified Grounded Theory Approach. RESULTS: Analysis of mothers' narratives revealed heightened physical burden, psychological distress, severe stress, and social isolation. Our findings highlight those mothers who engaged in the home program navigated the intricate parenting landscape through problem-solving, including managing negative emotions, their demanding schedules, and societal norms. CONCLUSION: This study offers insights into the perceptions, experiences, and behaviors of families in supporting the development of parenting strategies within the family. Occupational therapy should prioritize evaluating a mother's parenting context and her interactions with her environment. Furthermore, it is crucial to provide support for her to independently formulate suitable parenting strategies that resonate with the specific circumstances of her family.