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.

Virtual Community Conversations as Catalysts for Improving Transitions for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) aspire to participate in a variety of activities after high school, such as attaining paid employment, enrolling in postsecondary education, being involved in their communities, living independently, and building friendships. However, complex and longstanding transition barriers require comprehensive solutions that are tailored to a local community's unique needs and available resources so that local youth with IDD may achieve their desired outcomes. This article presents "virtual community conversations" as a promising approach for bringing together local communities to tackle barriers to good outcomes for residents with IDD. Attendees were able to effectively generate innovative recommendations for addressing issues in their local communities. We offer recommendations for enhancing and extending implementation of this approach.

Development of a sexual consent intervention for adolescents with intellectual and developmental disabilities.

BACKGROUND: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. METHODS: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. RESULTS: The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. CONCLUSION: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.

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).

Exploring needs and requirements for a prototype device measuring physical activity in pediatric physical therapy: A qualitative study.

AIMS: To analyze needs and requirements of Pediatric Physical Therapists (PPTs), parents, children and adolescents with and without developmental disabilities in the future use of an activity monitor prototype (AM-p) in everyday clinical practice. METHODS: Qualitative exploratory study with a thematic analysis approach, based on Braun and Clarke's six steps. Codes derived from the analysis and central themes were collated, based on Fleuren et al.'s groupings of determinants. RESULTS: We interviewed 25 PPTs, 12 parents, and 12 children and adolescents. Within four groupings of determinants, we found nine themes: 1) development of information materials; 2) application: output visualization and ease of use; 3) design; 4) relevance and acceptance; 5) shared decision-making; 6) compatibility in daily living; 7) finances, 8) time, and 9) legislation and regulations. CONCLUSIONS: End-users have similar basic needs, with individual fine-tuning to be addressed during further development of the AM-p. A child-friendly design, information material, and an easy-to-use application to read and interpret results, need to be developed. Efficient training for PPTs is important for the use of the AM-p and analysis of results. Communication between PPTs and children as well as parents enhances shared decision-making. We recommend involving diverse end-users to enable maximum customization of the AM-p.

Implementation of Learn to Play Therapy for Children in Special Schools.

IMPORTANCE: Play is the primary occupation in childhood and fundamental to occupational therapy practice. OBJECTIVE: To evaluate a play intervention in special school settings. DESIGN: Pre- and postinvolvement of a 7-mo play program. SETTING: Four special schools in Victoria, Australia, for children with IQs < 70. PARTICIPANTS: Thirty-eight children with diagnoses including intellectual disability, autism, and global developmental delay, 7 teachers, 2 speech pathologists, and 2 occupational therapists. INTERVENTION: Learn to Play Therapy for 1 hr per week over a 7-mo period. OUTCOMES AND MEASURES: Pre-post outcome measures included children's pretend play skills, language, social skills, emotional regulation, and academic competence. RESULTS: Mean age of 38 children (15 girls and 23 boys) at baseline was 5 yr 7 mo (SD = 0.46 yr). Results showed significant changes in children's pretend play (p = .03), ability to recall sentences (p = .02), social skills (p = .022), and academic competence (p = .012). Learn to Play had a large effect on children's narrative skills (d = 2.72). At follow-up, object substitution at baseline influenced expressive language (p < .001), narrative mean language utterance (MLU; p = .015), social skills (p < .001), and academic competence (p < .001); elaborate play at baseline plus time influenced social skills (p < .001); and elaborate play at baseline influenced narrative MLU (p =. 016), sentence recall (p = .009), and academic competence (p = .001). CONCLUSIONS AND RELEVANCE: Embedding pretend play within practice positively influenced children's language, narrative, social, and academic skills. Plain-Language Summary: This study adds to the limited research on play-based therapy programs in special school settings for children with an IQ of less than 70. Children participated in Learn to Play Therapy, during which an occupational therapist, who has observed and assessed the child's play and understands the child's play abilities, played beside the child. Learn to Play Therapy is a child-centered therapy that is used to increase a child's ability to self-initiate and enjoy pretend play. The positive impacts of supporting the children's pretend play ability were highlighted by increases in their pretend play, language, social skills, academic competence, and narrative language after participating in Learn to Play Therapy in their special schools.

Menstrual education programs for girls and young women with intellectual and developmental disabilities: A systematic review.

BACKGROUND: Providing menstrual education and guidance for menstrual management for girls and young women with intellectual disabilities is recommended to ensure smooth pubertal transitions and to support menstrual self-agency. METHOD: The purpose of this systematic review is to explore menstrual education interventions for girls and young women with intellectual disabilities. RESULTS: Nine studies were included. Interventions were provided in small groups (n = 4) and individually (n = 5). Most studies used dolls (n = 7) and task analysis (n = 7) to teach pad-replacement skills. All reported significant improvements in participant skills and/or knowledge following the intervention. Only one study addressed self-agency and self-esteem as an outcome of the intervention. Menstrual education for girls and young women with intellectual disabilities is largely focused on pad-replacement skills. CONCLUSION: Further research is needed to understand the impact of menstrual health and hygiene education on variables apart from skill improvement such as self-agency and long-term health outcomes related to menstrual health.

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.

The State of Employment for People With IDD: Implications for Practice, Policy, and Equity.

Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services. Recommendations address strengthening the implementation of employment policy, developing pathways to employment, and engaging individuals with IDD and, in particular, individuals with diverse social characteristics in reflecting on the quality of their experiences and supports.

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.

Environmental Modifications for People With Intellectual and Developmental Disabilities: A Policy Analysis of Medicaid Home- and Community-Based Services.

IMPORTANCE: Environmental modifications are targets for occupational therapy intervention because they support activities of daily living, self-efficacy, personal control, independence, and community living for people with intellectual and developmental disabilities (IDDs). OBJECTIVE: To examine how environmental modifications were provided to people with IDDs through Medicaid home- and community-based services (HCBS) waivers across the United States in fiscal year (FY) 2021. DESIGN: Using a mixed-methods policy analysis, we examined FY 2021 Medicaid HCBS 1915(c) waivers from across the United States to examine whether, and how, states provided environmental modifications to people with IDDs. RESULTS: In FY 2021, 35 states projected spending $68.8 million on environmental modifications for 12,671 people with IDDs. The purpose of environmental modifications was most often to promote the health, welfare, and safety of people with IDDs (82.68%), and to promote their independence (69.29%). The most common examples of environmental modifications included ramps and/or lifts (70.08%), widening doorways and/or hallways (61.42%), bathroom modifications (58.27%), specialized electrical and/or plumbing for medical equipment (54.33%), and grab bars and/or handrails (53.54%). CONCLUSIONS AND RELEVANCE: HCBS waiver data on environmental modifications for people with IDDs enhances an understanding of this funding source and provides a foundation of advocacy for occupational therapy practitioners to support people with IDDs with living, as well as aging, in the community rather than in institutions. An expansion of environmental modifications in HCBS for people with IDDs aligns with the aim of Medicaid HCBS waivers to promote community integration, self-determination, and independence, which are all benefits of environmental modifications. Plain-Language Summary: This study can help occupational therapy practitioners determine what funding sources are available in their state to help their clients with intellectual and developmental disabilities access environmental modifications. The findings can also help guide advocacy and lobbying efforts to expand access to environmental modifications.

Structured, Creative Dance Classes for Children with Developmental Disabilities: A Pilot Study of Feasibility and Preliminary Effect on Motor Function.

INTRODUCTION: Promoting physical wellness for preschool-aged children with developmental disorders (DD) is a known challenge. Interventions are more likely to succeed when physical activity opportunities are available to children within the context of their typical environments. We evaluated the feasibility and preliminary effect of 1 potential solution: structured creative dance classes delivered within a preschool environment. METHODS: Using a non-randomized feasibility study design, we offered physical activity in the form of creative dance classes for children with and without DD within an inclusive preschool. Classes lasted 30 minutes and were held once a week or 7 weeks. We measured attendance (primary), observed active participation (% of class duration), and balance (Pediatric Balance Scale). Non-parametric descriptive statistics are expressed as median (interquartile range). Balance was evaluated regarding (a) difference between groups at baseline (Mann-Whitney statistic) and (b) intervention effect for children with DD (1-tailed, paired t-test). RESULTS: Twelve preschoolers (age range = 3-5 years) participated: 4 with DD and 8 with neurotypical development. Attendance was 93% (79%-100%) for children with and 100% for children without DD. Per class, rate of active participation in dance activity was 33% (28%-45%) for children with and 80% (71%-82%) for children without DD. Starting balance scores were lower (P = .014) for children with DD (42 (39-45)) compared to those without (51 (50-52)). Post-intervention, balance scores improved for the children with DD to 50 (50-51) (df = 3, p = .014, t-statistic = 2.35); each child with DD surpassed minimal detectable change for balance. CONCLUSION: Creative dance classes, delivered within an inclusive preschool environment, are feasible for some preschool-aged children with DD to participate in and efficacious as a physical training challenge at low activity doses. More study is warranted of this potential solution to meet the need for physical wellness promotion among young children with DD.

Using varied technological agents-assisted simultaneous prompting for teaching discrete skills to children with developmental disabilities.

This study examines the effectiveness of combining simultaneous prompting method with small group teaching through computer projection, SMART board, tablet computer and humanoid robot to teach discrete skills to children with developmental disabilities (CDD). The study included 14 CDD aged 10-15. It utilizes a multiple probe design across behaviors and probe conditions and replicates them across subjects. Each participant is taught discrete skills within a small group teaching arrangement. The study includes daily probes, full probes, teaching sessions, generalization, and follow-up sessions. It also collects interobserver reliability and application reliability data. Graphical analysis demonstrates the effectiveness of computer-based simultaneous prompting incorporating different technologies in a small group teaching setting. Additionally, we examined differences in children's responses to different technological agents in teaching discrete skills to children with developmental disabilities. The study provided preliminary data on which of these agents is best. The results demonstrate its effectiveness by showing that participants maintained the learned behaviors and applied them to a variety of tools, equipment, and individuals in the first, third, and fourth weeks after the intervention. Additionally, the study highlights the subjects' high accuracy in acquiring behavior through observational learning. Finally, simple humanoid robots, tablets, smart SMART boards, and computer projections have been effective in teaching discrete skills to CDD, respectively.

A systematic review of acquisition and mastery of skills taught using the Picture Exchange Communication System.

The Picture Exchange Communication System (PECS) is a popular augmentative and alternative communication intervention for individuals with developmental disabilities that includes six, sequential phases of instruction. We systematically reviewed published and unpublished single-case PECS studies for details about the percentage of participants mastering PECS phases, how long it took participants to master PECS phases (in trials to mastery), and what constituted mastery of PECS phases. We found most participants mastered only the first two phases of PECS, and Phases I, II, and IV showed the slowest and widest variability in trials to mastery. Moreover, participants who were taught the third PECS phase learned to select from an average array of three symbols, which may limit the range of messages they can communicate. We discuss our findings in light of a few important limitations and provide directions for future researchers along with recommendations for professionals who might consider PECS.

Pushing the Integrated Employment Agenda: Employment Systems Partners and the High-Performing States Model.

This article summarizes data collected from key informants in Iowa, Maryland, and Oklahoma regarding efforts to support integrated employment for people with intellectual and developmental disabilities (IDD). We highlight features that contribute to the effectiveness of collaborative structures that have resulted in each state's success in achieving integrated employment outcomes for individuals with IDD across three state systems: IDD, vocational rehabilitation, and education. We present these features using the seven elements of the High-Performing States Employment Model. These elements have been found to be important in achieving higher rates of competitive integrated employment outcomes for people with IDD.

Parent-authored memoirs: Lessons in the practice of narrative medicine.

Healthcare professionals, including practitioners of medical genetics and genetic counseling, have much to learn about the experiences of parents who are raising and caring for a child with a rare disease or developmental disability. Knowledge and understanding of the challenges in the care of a child with conditions such as Down syndrome and Wolf-Hirschhorn syndrome are at the core of the practice of genetic medicine. Insights into this experience can come from active listening to stories and from deep reading of memoirs and narratives authored by parents of children having these challenges. A recent book, Raising a rare girl: A memoir, by writer, poet, and teacher, Heather Lanier, represents a relevant and prototypic example of this genre. Spending the effort in the contemplation of the parental stories provides a valuable lesson in narrative medicine and the experience of empathy for the plight of the family.

Clinical management of individuals with Intellectual Disability: The outbreak of Covid-19 pandemic as experienced in a clinical and research center Research in Developmental Disabilities.

During the COVID-19 pandemic, the Oasi Research Institute of Troina (Italy) became an important hotbed for infection; in fact, 109 patients with different levels of Intellectual Disability (ID) tested positive for COVID-19. The procedures and interventions put in place at the Oasi Research Institute due to the COVID-19 pandemic are exhaustively reported in this paper. The description of the clinical procedures as well as remote/in person psychological support services provided to people with ID and their families are here divided into three different sections: Phase I (or Acute phase), Phase II (or Activity planning), and Phase III (or Activity consolidation). In each section, the main psycho-pathological characteristics of patients, the reactions of family members and the multidisciplinary interventions put in place are also described.