Understanding Behavioral Manifestations of Obsessive-Compulsive Disorder in People with Intellectual Disabilities—A Qualitative Study

Background: There is limited knowledge about obsessive-compulsive disorder (OCD) in people with intellectual disabilities (IDs). This paper describes the manifestation of compulsive behaviors associated with OCD at the behavioral level in people with ID in institutionalized settings. The aim was to gain nuanced insight into appropriate understanding and classification in this specific context, and derive implications for research and practice. Methods: Individual cases of people with ID (n = 7) were studied to assess compulsive symptoms through two days of on-site observation of the person with ID within the institution, guided group discussions (n = 28), and semi-structured interviews with key informants and caregivers of the person with ID (n = 20). Caregiver ratings of the compulsive behavior checklist were compiled. Data were analyzed using qualitative content analysis. Results: All forms of OCD were present. Characteristics of compulsive behaviors in people with ID at the behavioral level included less complex and more obvious compulsive acts, immediate responses, signs of tension, motor restlessness, facial expression changes, repetition, need for predictability, time-consuming behaviors, and aggressive reactions when these acts were interrupted. Some of the compulsive behaviors corresponded to the ICD-11 OCD code 6B20, and others to compulsions as a psychological symptom (MB23.4). Conclusions: OCD may manifest atypically at the behavioral level in people with ID, posing significant challenges for accurate classification due to symptom ambiguity. Follow-up differential diagnostic studies are needed to more accurately identify and differentiate OCD symptoms in people with ID. Further, disorder-specific guidelines for recognizing OCD in people with ID are needed for institutionalized settings without psychiatric-psychotherapeutic expertise.

Assessment of Quality of Life, Family Function and Family Empowerment for Families Who Provide Home Care for a Child with Severe Motor and Intellectual Disabilities in Japan

Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted;QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.

Processes through Which the Grandparents of a Child with Severe Motor and Intellectual Disabilities (SMID) May Become Involved in Raising the Child

In Japan, it is common practice to involve grandparents in the care of children with severe motor and intellectual disabilities (SMID), as it may be difficult for nuclear families to handle such children by themselves. This study aimed to explore and describe the process through which the grandparents of children with SMID may be involved in their upbringing. Data were obtained via semi-structured interviews with 13 grandparents who had a grandchild with SMID. The collected data were examined using Yasuhito Kinoshita’s modified grounded theory approach. Altogether, 11 categories were identified from 29 themes. The results revealed two broad patterns concerning the nature of the grandparents’ involvement and their definition of grandparenthood in the context of raising a grandchild with SMID. In one process, grandparents supported the child’s family. They also learned to relate to the child and their family, despite experiencing a lack of responsiveness from the child initially. This ultimately resulted in them being inspired by their grandchild. In the other process, the grandparents left the care of their grandchild to the child’s family and chose to monitor the child’s welfare indirectly. In both the processes, the level of involvement was determined by the extent to which the family chose to ask grandparents for help. The study’s findings can be used to identify the kind of support that grandparents of children with SMID require while highlighting the role of considering the needs and intentions of the children’s families.

Epilepsy Properties and Seizure Suppression in a Severe Motor and Intellectual Disabilities

Purpose: In hospitalized patients with severe motor and intellectual disabilities (SMID), we analyzed the association of the SMID class to factors such as the prevalence of epilepsy, frequency of seizures and number of concomitantly used anti-epileptic drugs (AEDs), and evaluated the usefulness of addition of the new AEDs (gabapentin, topiramate, lamotrigine and levetiracetam) to the treatment regimen. Results: The prevalence of epilepsy in the study population was about 60%. There were 39.5% who were free of epileptic seizures during the 6-year survey period and remained well-controlled with medication. As the SMID increased in severity, the frequency of seizures increased, the number of concomitantly used AEDs increased, and the tendency towards addition of new AEDs became more marked. About the use situation of new AED and old AED, this comparison revealed a tendency towards addition of a new AED when the seizures were poorly controlled in response to concomitant use of multiple old AEDs. The frequency of seizures and the number of concomitantly used AEDs were higher in patients with SMID of high severity than in those with SMID of low severity. Analysis of the time-course of the frequency of seizures before and after the addition of new AEDs revealed a significant reduction in the frequency of seizures following the addition of the new AEDs (P > 0.001). Conclusions: These results suggest that the new AEDs are useful in the management of SMID-associated epilepsy, because of their effect of reducing the frequency of SMID-associated seizures and their high tolerability.

Family Support Situation and Educational Strategies for Primary School Children with Intellectual Disabilities Learning in Regular Class

This paper aims to verify the family support situation for primary school children with intellectual disabilities learning in regular class and to explore various educational strategies to promote their development.A self-made questionnaire was used in this survey,and the parents of 380 intellectual disabled students were the subjects of this survey.It turns out that the overall family support for intellectual disabled children learning in regular class in China is good,but it is affected by the degree of obstacles.Factors such as grade,gender,and parental education had no significant effect on family support.It is the shared responsibility of the government,schools,and parents to promote the level of family support.Governments at all levels must implement family support projects,schools must carry out family education guidance to impart scientific parenting knowledge,and parents must take note of their own responsibilities,so as to promote the physical and mental development of children with intellectual disabilities.

Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities

Objectives:Family caregivers raising children with severe motor and intellectual disabilities(SMID)experience the enormous burden of care.The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families.The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan.Methods:We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools.We assessed the main outcomes using the Family Empowerment Scale(FES).We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment.Results:In total,1362 primary caregivers were included in our study.Our results show that factors contributing to high FES scores are higher age of the primary caregiver,higher education,greater recognition of regional support,lower childcare burden,higher utilization of home visit services,higher usage of a childcare institution,higher household income,and stronger family bonding.Conclusion:Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education,low household income,high childcare burden,and fragile bonding with the family.Second,they should encourage such families to use regional support resources for childcare.That is,policy makers should consider ways to promote home visits and institutional services for the care of children with SMID,aiming especially for the provision of well-coordinated care and services.

Depressive symptoms, social support, cognitive function, and stigma: predictors of resilience in caregivers of children with intellectual disabilities

Objective:Family plays an important role in taking care of children with intellectual disabilities(IDs).Resilience supports coping strategies for caregivers with their children caring.However,factors influencing the resilience of caregivers with ID in Thailand are yet to be identified.Therefore,the aim of this study was to identify the predictors of resilience in caregivers of children with moderate to severe ID.Methods:A cross-sectional study was implemented in caregivers of children with ID aged 18 years and older who had children diagnosed with ID aged 6–18 years and classified as moderate to severe ID.Descriptive statistic and multiple linear regression were used for data analysis.Results:The study sample consisted of 85 caregivers who took care of their children older than 5 years(95.30%).Depression,social support,cognitive function,and stigma could predict the resilience(F[4,80]=26.79,P<0.001)and explain the variability of resilience by 57.3%.Conclusions:Caregivers have to take care of their children for a long period,which could develop a burden to the caregivers.The resilience and influencing factors should be monitored and managed by developing a campaign to promote caregivers’health and well-being.

Healthy lifestyle for people with intellectual disabilities through a health intervention program

There are well known gaps related to health care service and public health interventions for people with Intellectual Disabilities (ID), but there is still lack of research information of what nurses can do to reducing health disparities of persons with ID. The present study aimed at exploring the views of people with ID about a healthy lifestyle, exercise, and to take part in a health promotion program. A qualitative method was an appropriate method for capturing the informants’ points of view. Participants were adults with intellectual disability who would be able to give their consent verbally and in written form. Women (n = 7) and men (n = 6). Data were collected from focus group interviews and analysed according to a qualitative content analysis of the tape-recorded and verbatim transcribed interviews. The participants took part in four workshops about healthy food, and ten physical activities addressing the connection to physical, social and emotional health. The results of the focus group interviews show that participants have knowledge about the importance of a healthy lifestyle for good health including physical activity and healthy food. Participants also describe social interaction and self-determination as important aspects in their life. It could then be concluded that the health promotion program result point at consciousness about a healthy lifestyle. There is still lack of research information of what public health nurses can do to reducing health disparities of persons with ID. Public health nurses work in community-based services and therefore they also might support persons with ID through health intervention programs.

Curriculum Adaptation in Special Schools for Students with Intellectual Disabilities(SID):A Case Study of Project Learning in One SID School in Hong Kong

Using a qualitative case study approach,the authors analyzed the curriculum adaptation process for one project learning activity in School K,which is a SID school in the context of school-university collaboration.Multiple sources of data were collected for triangulation,including interviews,documents and observations.Curriculum adaptation strategies in this study were analyzed from five perspectives:instructional goals,instructional content,instructional strategies,instructional settings,and student behavioral needs.It was found that curriculum adaptation efforts could help students with ID develop potential at their own level through project learning activates and teachers could also gain professional development during the university-school collaboration process.As for future studies,enlarging the sample size,involving teachers’past orientations and motivations in the project learning process,and collecting quantitative data could all be taken into account.

I KNOW I CAN The Special Olympics in Shanghai next year can help more people with intellectual disabilities learn to cope with the challenges of life

Preparations for the Beijing Olympic Games are changing gears, moving from the planning to the operational stage

The Role of Music Therapy in Supporting Intellectually Disabled Youth in Senegal

Introduction: Music therapy is a practice for helping and supporting people with intellectual and relational difficulties. This study illustrated the benefits of music therapy for young people living with intellectual disabilities (YLID) in an African context. Methodology: This study investigated six young individuals with intellectual disabilities who had undergone three years of music therapy. They were participants in the inclusive non-academic training program at the National School of Arts in Dakar from 2017 to 2019. Data collection utilized individual interviews with the youths, evaluation grids from teachers and psychiatrists. Guardians provided informed consent along with the assent of the young participants. Results: The six young were aged between 18 and 30 years old, with an average age of 24.6 years. Four of the YLID were male. Three young people with intellectual disabilities had delayed psychomotor development. Observations revealed the beneficial influence of music therapy on the health and well-being of young individuals. Music played a role in alleviating stress and anxiety among youth with intellectual disabilities (YLID), enhancing their mood and mental health. It assisted in navigating challenging situations and heightened alertness among YLID. Additionally, music therapy contributed to improvements in dyslexia, fine and gross motor skills, and memory development among intellectually disabled youth, ultimately facilitating their integration into society. Conclusion: In light of our results, music therapy makes a major contribution to the empowerment of YLID. Engaging in musical activities helps young people connect with others through instrumental expression and a sense of accomplishment. By facilitating music therapy, it becomes possible to combat discrimination and stigmatization, thus promoting the social inclusion of intellectually disabled youth. Therefore, it is important to promote music therapy in Senegal to meet the needs of YLID.

Clinical observation on Governor Vessel-unblocking and brain-refreshing scalp acupuncture for cerebral palsy complicated with intellectual disabilities

Objective：To observe the clinical efficacy of Governor Vessel-unblocking and brain-refreshing scalp acupuncture for cerebral palsy （CP） complicated with intellectual disabilities. Methods：A total of 300 CP cases aged between 1 and 5 years were randomly allocated into a treatment group （n=150） and a control group （n=150）. Patients in the treatment group were treated with Governor Vessel-unblocking and brain- refreshing scalp acupuncture combined with rehabilitation training, whereas patients in the control group received rehabilitation training alone. The Beijing Gesell developmental （Gesell） scale and gross motor function measure （GMFM） scale were used to assess the motor and intellectual development before and 3 months after the treatment. In addition, the head CT/MRI examination was applied to assess the brain nerve repair before and after the treatment. Results：After the treatment, the total effective rate in the treatment group was 78.0%, versus 42.7% in the control group, showing a statistical significance （P〈0.05）. As for scores of five subscales in the Gesell scale, there were significant intra-group differences in the treatment group （allP〈0.05）; and the scores in the treatment group were significantly better than those in the control group （allP〈0.05）. As for scores of five dimensions in GMFM scale, there were significant intra-group differences in the treatment group （allP〈0.05）; and the scores in the treatment group were significantly better than those in the control group （allP〈0.05）. According to the head CT/MRI findings, the total effective rate was 73.3% in the treatment group, versus 62.0% in the control group, showing a statistical significance （P〈0.05）. Conclusion：When used in combination with rehabilitative training, Governor Vessel-unblocking and brain-refreshing scalp acupuncture can significantly improve the clinical efficacy for cerebral palsy complicated with intellectual disabilities. It can also improve the patients＆#39; motor function, intelligence and language ability.

Utilizing the China Health and Retirement Longitudinal Study (CHARLS) to Understand the Aging of People Living in the Community with Intellectual and Developmental Disabilities

There remain challenges in understanding the aging lives of people with intellectual and developmental disabilities. Method: A cross-sectional comparison of people with and without I/DD was created using China Health and Retirement Longitudinal Study (CHARLS). A definition of I/DD was established, three samples were created: those with an assigned/described intellectual and developmental disability prior to age 22 years;those with similar impairments at and after age 22 years;and those in the population without an assigned/described impairment. Findings: Those with I/DD appeared to have greater health needs on initial analysis. People with an impairment similar to I/DD but occurring after age 22 years had the same or greater needs in subsequent analyses. Both groups had greater needs than those with no identified disability. Discussion: There must be greater efforts to discover those with I/DD who are already in existing datasets, greater attention to the full range of lives led by people with I/DD and inclusion of data from a broader range of countries.

Associated Factors of Dental Caries among Intellectually Disabled Persons in Specialized Centers of Ouagadougou

Introduction: Several studies have reported a high prevalence of dental caries among the people with intellectual disabilities. In order to identify the sociodemographic, clinical and behavioral factors associated with it, we conducted a study in specialized centers welcoming subjects with intellectual disabilities in Ouagadougou (Burkina Faso). Objectives: The objective of this study was to identify the factors associated with it among intellectually disabled in the specialized centers of Ouagadougou. Methods: The study was cross-sectional analytical. The survey took place between November 2020 and January 2021 among people with intellectual disabilities in reception centers receiving a grant from the Ministry of Women, National Solidarity, Family and Humanitarian Action. Data collection was done with a questionnaire adapted from the World Health Organization (WHO) and dental caries was recorded according to WHO criteria in decayed, missing or filled teeth generating a DMF index. Logistic regression was used to identify factors associated with the presence of dental caries. Results: A total of 193 participants were included in the study with an average age of 12.4 years ± 7.9. The overall prevalence of caries measured with the DMF index was 58.6% 95% CI [51.2 - 65.8]. It was significantly associated with female gender (OR = 4.2;95% CI [1.4 - 12.5], p = 0,01), the clinical form of mental illness (epilepsy OR = 3.8 95%;CI [1.2 - 12.7], p = 0,02, trisomy OR = 5.0;95% CI [1.1 - 22.9], p = 0,03, motor autonomy OR = 0.2 95%;CI [0.1 - 0.7], p = 0,01) and at use of toothpaste OR = 9.33;95% CI [1.05 - 82.7], p = 0,04. Conclusion: Dental caries remains a very present pathology in most people living with an intellectual disability. Also, it is necessary to put in place prevention strategies to reduce its prevalence and improve access to oral care for these people.

CNKSR2 interactome analysis indicates its association with the centrosome/microtubule system

The protein connector enhancer of kinase suppressor of Ras 2(CNKSR2),present in both the postsynaptic density and cytoplasm of neurons,is a scaffolding protein with several protein-binding domains.Variants of the CNKSR2 gene have been implicated in neurodevelopmental disorders,particularly intellectual disability,although the precise mechanism involved has not yet been fully understood.Research has demonstrated that CNKSR2 plays a role in facilitating the localization of postsynaptic density protein complexes to the membrane,thereby influencing synaptic signaling and the morphogenesis of dendritic spines.However,the function of CNKSR2 in the cytoplasm remains to be elucidated.In this study,we used immunoprecipitation and high-resolution liquid chromatography-mass spectrometry to identify the interactors of CNKSR2.Through a combination of bioinformatic analysis and cytological experiments,we found that the CNKSR2 interactors were significantly enriched in the proteome of the centrosome.We also showed that CNKSR2 interacted with the microtubule protein DYNC1H1 and with the centrosome marker CEP290.Subsequent colocalization analysis confirmed the centrosomal localization of CNKSR2.When we downregulated CNKSR2 expression in mouse neuroblastoma cells(Neuro 2A),we observed significant changes in the expression of numerous centrosomal genes.This manipulation also affected centrosome-related functions,including cell size and shape,cell proliferation,and motility.Furthermore,we found that CNKSR2 interactors were highly enriched in de novo variants associated with intellectual disability and autism spectrum disorder.Our findings establish a connection between CNKSR2 and the centrosome,and offer new insights into the underlying mechanisms of neurodevelopmental disorders.

Submicroscopic 11p13 deletion including the elongator acetyltransferase complex subunit 4 gene in a girl with language failure, intellectual disability and congenital malformations: A case report

BACKGROUND We described the main features of an infant diagnosed with facial dysmorphic,language failure,intellectual disability and congenital malformations to strengthen our understanding of the disease.Currently,treatment is only rehabilitation and surgery for cleft lip and palate.CASE SUMMARY The proband was a 2-years-8-months-old girl.Familial history was negative for congenital malformations or intellectual disability.The patient had microcephaly,upward-slanting palpebral fissures,depressed nasal bridge,bulbous nose and bilateral cleft lip and palate.Brain magnetic resonance imaging showed cortical atrophy and band heterotopia.Her motor and intellectual development is delayed.A submicroscopic deletion in 11p13 involving the elongator acetyltransferase complex subunit 4 gene(ELP4)and a loss of heterozygosity in Xq25-q26.3 were detected.CONCLUSION There is no treatment for the ELP4 deletion caused by a submicroscopic 11p3 deletion.We describe a second case of deletion of the ELP4 gene without aniridia,which confirms the association between ELP4 gene with several defects and absence of this ocular defect.Additional clinical data in the deletion of the ELP4 gene as cleft palate,facial dysmorphism,and changes at level brain could be associated to this gene or be part of the effect of the recessives genes involved in the loss of heterozygosity region of Xq25-26.3.

Empirically supported psychological treatments:The challenges of comorbid psychiatric and behavioral disorders in people with intellectual disability

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability(ID)at all stages of their life.We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population,along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems.We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID.The review is structured around the three generations of therapies:Applied behavior analysis(e.g.,positive behavior support),cognitive behavioral therapies(e.g.,mindfulness-based cognitive therapy),and contextual therapies(e.g.,dialectical behavior therapy).We conclude with some recommendations for professional practice in the fields of ID and psychiatry.

Students With Intellectual Disability Learn How to Write With Motivation and Joy

Reading and writing can be seen as two sides of the same coin but have different demands for the writer and the reader to handle.The aim of this article is to focus on writing,how to create texts when students have intellectual disabilities and how students with intellectual disabilities have improved their writing skills through an intervention study.Writing will be highlighted from different perspectives,mostly about how writing can be supported through a structural way of working.When it comes to reading and reading difficulties,many studies have been done from different aspects of these topics.Most of these studies are among students with typical intellectual development.Studies about writing development and difficulties are fewer in number than studies about reading,but these are also mostly about children with typical development.When it comes to students with intellectual disability,studies about reading are rare and even rarer when it comes to writing.With this article,we will shed light on how writing difficulties can occur in general development and also when students have intellectual disability.The intervention study presented in this article will give some examples of how teachers can support every student’s writing development.

Neurobiology of Neuronal Network Alteration in Intellectual Disability Related to Fetal Alcohol Spectrum Disorders

The molecular and cellular mechanisms by which alcohol produces its deleterious effects on neuronal networks are only now beginning to be understood. This review focused on alcohol-induced neurobiological alterations on neuronal network components underlying information processing, for further understanding of intellectual disability related to FASD. Abnormal neurodevelopmental events related to alcohol-damaged fetal brain included neurogenesis inhibition, aberrant migration, impaired differentiation, exacerbated apoptosis, impaired axon outgrowth and branching altering synaptogenesis and synaptic plasticity, abnormal GABAergic interneurons triggering synaptic inhibitory/excitatory imbalance, reduced myelinogenesis causing injured white matter in prefrontal lobe and atrophied corpus callosum compromising interhemispheric information transfer, the whole compromising neuronal network scaffolding which may lead to biased information processing with deficits in executive function. What added to these abnormalities are smaller gray matter and reduced hippocampus, resulting in cognition and memory failures. As a whole, these developmental disorders may underlie intellectual disability related to FASD. In rodents, these neuronal network components matured mainly during the second and third trimesters equivalents of human gestation. Transferability of results from animal to human was also discussed. It was hoped that the understanding of alcohol-induced neuronal networks failure mechanisms during the developing brain may lay a foundation for prospective new treatments and interventions.

Support for Independent Work： Use of Cell Phones by the Intellectually Disabled in Their Daily Lives

This paper presents a technological solution to promote and help independent access to work for disabled people. The aim is to develop a form of technical assistance that supports them in the control of schedules, prevention of dangerous areas in the work place, warnings and automatic alarm generation. The device chosen to exchange all this information is a smartphone based on Android Operating System and GPS （Global Positioning System） technology mainly. A set of Android applications has been developed using Java language, and controlling the device via Google-developed Java libraries. All of them are connected to the Server Application through the Communications Module. The Server Application Module provides the assistants or psychologists the possibility of supervise all the handicapped people activities. The assistants, psychologists and users have all evaluated the application very positively as it covers disabled people＇s needs perfectly.