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Sexuality is a valuable part of people's lives, including people with intellectual disabilities (ID). Parents and social services personnel are significant parties for promoting the autonomy of people with ID regarding sexuality, although evidence reveals their actions tend to be in the opposite direction. Sexual attitudes do not emerge solely as personal or individual but evolve from interactions with others in a particular sociocultural environment. To explore the sexuality of people with ID, this study set out to understand the dynamic of people with ID, parents and social services personnel within the cultural context of Hong Kong. In total, 19 participants including people with mild ID, parents and social services personnel were recruited. Individual interviews were conducted, and the data were analyzed applying Interpretative Phenomenological Analysis and dramaturgy. Findings revealed the participants' experiences, obstacles, and underlying feelings regarding the sexuality of people with ID, and the phenomenon, "not taking action" formed by all the groups. Chinese Confucian culture was revealed as the factor influencing the dynamic on the issues of sexuality. With respect to cultural expectations, government and social services agency leadership should take the lead to adopt an evidence-based sex education protocol. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities share the same human need for affectionate and intimate relationships as people without a disability. Limited research has investigated sexual issues and concerns among adults with intellectual disabilities, including dating, intimate relationships, and marriage. This study employed Interpretative Phenomenological Analysis to identify the understanding and needs regarding sexuality of people with intellectual disabilities. Five people with mild grade intellectual disabilities participated in face-to-face interviews in which they discussed their struggle to have romantic relationships and sexual encounters. Their "understanding" and "doing" on sex issues were identified. The lack of adequate sex education and Chinese culture potentially impact people with intellectual disabilities' beliefs and behaviors on sexuality. Various types of intervention were discussed. Further research is necessary to understand the cultural context of the challenges and experiences regarding sexuality faced by people with intellectual disabilities and their families. [ABSTRACT FROM AUTHOR]

Interviews with fifteen teachers and educators delivering sex and relationships education to people with intellectual disabilities were conducted. The aim of the study was to investigate their experiences and views. Thematic analysis was used to look for patterns and themes in the verbatim transcripts. Three main themes were identified: challenges when delivering sex education, how to overcome these difficulties, and important topics for sex and relationships education. Implications for delivering sex and relationships education for people with intellectual disabilities and support needed for teachers are discussed. [ABSTRACT FROM AUTHOR]

The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking) participated in this study. The results supported the factor validity and reliability, measurement invariance (between English and French versions), a lack of differential items functioning (as a function of youth's age and ID level, but not sex in the English-Australian sample), temporal stability (over one year interval), and convergent validity (with global self-esteem and school loneliness) of a bi-factor exploratory structural equation modeling representation of the GAS-ID. The present study supports the psychometric properties of the English-Australian and French-Canadian versions of the adapted GAS-ID. [ABSTRACT FROM AUTHOR]

Dating agencies are a small, but growing sector of social care provision for people with intellectual disabilities. The research reported here is the first to explore, with 10 specialist agencies in the UK, why they were set up, how they operate, the barriers and problems they encounter and their success or otherwise in facilitating relationships for people with intellectual disabilities. A strong case is made for the proliferation of such services. [ABSTRACT FROM AUTHOR]

The article focuses on the view of intellectually disabled people towards sexuality and its effects on the advancement of sex education. Topics discussed include the study being done on 20 people with intellectual topics through semi-structured interviews on topics like sex education, relationships and support, and results of the study recommended topics for enhancing a sex education programme like online relationships, social media and parenthood through Intervention Mapping.

The article aims to investigate the perceptions of parents and professionals about the Internet as a social arena for love and sexuality among young people with intellectual disabilities. It indicates a continuous restrictive net script where young people with intellectual disabilities as a group are looked upon as more vulnerable than other youth and are therefore are in need of more rules and threats than other young people.

People with neurodevelopmental disabilities, including intellectual disabilities and autism, want to have relationships but few are given the tools and opportunity to create those relationships in a safe and meaningful way. This strong desire to have relationships, coupled with reduced access to information, puts people with neurodevelopmental disabilities at high risk for being targets of sexual abuse and exploitation, as well as demonstrating social-sexual behavior that is unexpected or offensive to others. Research has long demonstrated that people with intellectual disabilities are sexually assaulted at much higher rates than the general population. In addition, it is common for people with intellectual disabilities and autism to miss out on employment, housing, and social opportunities due to unexpected social-sexual behaviors. To address this need, the research team developed the social-sexual education (SSE) program to teach people with neurodevelopmental disabilities how to create safe and meaningful relationships while also giving them information about sexual abuse and coercion. We recruited licensed professionals to pilot test the SSE program, and then we evaluated the tool using quantitative and qualitative methods. Our findings provide preliminary support for the SSE program. Implications and future directions are discussed. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to investigate whether socio-demographic variables and physical disability (e.g. sensory impairment and mobility problems) were associated with self-reported stigma in people with intellectual disabilities (ID), and to examine whether age, sex and ethnicity modified the relationship between severity of intellectual disability and self-reported stigma.Methods: 229 participants with mild or moderate intellectual disabilities were recruited from 12 centres/sites in England from community intellectual disability services, day centres, supported housing schemes, voluntary organisations and invitation letters. Information on physical disability and socio-demographic variables were obtained using a structured data collection form. Self-reported stigma was measured using a validated questionnaire.Results: Age was associated with self-reported stigma, with older adults reporting more stigmatising experiences. Participants with moderate intellectual disabilities were more likely to report being treated differently such as being made fun of and being treated like children. Physical disability such as sensory, mobility and speech problems were not associated with self-reported stigma. Gender modified the relationship between severity of ID and self-reported stigma as participants who were male and had moderate ID were more likely to report stigma compared to females with moderate ID. Categorical age also modified the relationship between severity of ID and self-reported stigma as older participants who had moderate ID were more likely to report stigma compared to younger people with moderate ID.Conclusions: Older adults and those with moderate ID are potentially at higher risk of being targets of public stigma or are more likely to report stigma. Interventions to help individuals cope with stigma could be targeted to this group. [ABSTRACT FROM AUTHOR]

During transition to adulthood, emerging adulthood is characterized by continuous identity negotiations (Deaux and Perkins in Individual self, relational self, collective self. Psychology Press, Philadelphia, pp 299-313, ). However, for young people with intellectual disabilities (ID) the ID identity may overshadow the development of sexual identity (Burns in Clin Psychol Forum 137:137-139, ). This study conducted an in-depth exploration of four young people and four of their carers' experiences of the development of sexual identity alongside the ID identity. Interviews were analysed using interpretative phenomenological analysis. Young people struggled for an ' as normal as possible' adult identity, and to develop sexual identity as a ' normal' identity, in the context of the overshadowing ID identity. Despite believing they should be enabled to develop sexual identity as part of their transition to adulthood, young people faced many obstacles, including stigma related to their ID. Carers described their challenges in proactively supporting sexual identity education and exploration, due to concerns about risk. Equality and protection need not be either/or priorities; however, there remains need for considerable change in UK practice and policy if the principles of rights, independence, choice and inclusion (Department of Health in Valuing people now: a new three-year strategy for people with learning disabilities. The Stationary Office, London, ; Department of Health in Valuing people. The Stationery Office, London, ) are to be met in relation to sexual identity development in people with ID transitioning to adulthood. [ABSTRACT FROM AUTHOR]

Background: Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation. Method: The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis. Results: Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people's relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future. Discussion: Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people's autonomy and take their relationships more seriously. [ABSTRACT FROM AUTHOR]

A limited amount of previous work has investigated the effects of course-based disability awareness programs in promoting attitudes towards people with disabilities. This study aimed to evaluate the effects of a 10-week course on university students' ( N = 42) attitudes towards individuals with intellectual disabilities. The effectiveness of the intervention was evaluated through quantitative and qualitative methods. The quantitative results showed significant improvements in the participants' attitudes (i.e., Empowerment and Similarity) after the intervention. Qualitative findings provided some support for the quantitative results and provided reasons for the attitudinal improvements. Overall, the results suggested that the course-based intervention program improved university students' attitudes towards people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

This study proposes a revision (R) of the Center for Epidemiologic Studies Depression Scale for youth with ID (CESD-ID) in English and French. 346 youth (36.02% girls) with mild (51.26%) and moderate (48.78%) ID (11–22 years; M = 15.69), enrolled in secondary schools in Canada (French-speaking; n = 115), and Australia (English-speaking; n = 231), as well as their parents and teachers, participated in this study. Results support the reliability, factor validity, equivalence (sex, ID level, comorbidities, and country), and convergent validity (with youth-, parent-, and teacher-rated measures of depression, anxiety, and loneliness/social isolation) of the CESD-ID-R. The CESD-ID-R allows youth with ID to provide a reliable and valid assessment of their depressive mood and happiness suitable for epidemiological studies. [ABSTRACT FROM AUTHOR]

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Objectives: Positive Behavioral Support (PBS) is considered the treatment framework of choice for children with intellectual and developmental disabilities (IDD) at risk of behavior that challenges. PBS demands stakeholder engagement, yet little research has explored goal formation in this context for caregivers of children with IDD. Methods: We used Talking Mats and semi-structured interviews to support 12 caregivers of children with IDD who displayed behaviours that challenge, to develop goals for PBS. Interviews covered quality of life for caregivers and their child, adaptive and challenging aspects of child behavior, and aspects of caregiver's own behavior. Results: Caregivers were able to form individualised and meaningful goals in relation to all domains, demonstrating rich insight into personal needs and needs of their child. The process of forming goals was psychologically and emotionally complex given prior experiences and needs of participants but effectively supported by the interview method. Conclusions: We conclude that goal formation in PBS requires careful consideration and structuring but has the potential to support effective working relationships and ensure assessment and intervention is aligned with the needs and aspirations of families. [ABSTRACT FROM AUTHOR]

Self-harm and suicidal behaviors are prevalent among autistic adults without intellectual disability (ID). Emotion dysregulation (ED), the difficulty in modulating emotions, has been identified as an important risk factor. Dialectical behavior therapy (DBT) has been proved effective to treat ED in disorders other than autism spectrum disorder. Our study aimed at assessing the feasibility, acceptability and preliminary efficacy of DBT in seven autistic adults without ID exhibiting self-harm and/or suicidal behaviors linked to severe ED. Our results suggest that DBT is feasible and highly acceptable to autistic adults without ID. Additionally, mean scores on the Difficulties in Emotion Regulation Scale decreased significantly post-treatment and at 4-month follow-up, suggesting that DBT might be efficacious in reducing ED in this population. [ABSTRACT FROM AUTHOR]

The SPARK cohort was established to facilitate recruitment in studies of large numbers of participants with autism spectrum disorder (ASD). Online registration requires participants to have received a lifetime professional diagnosis by health or school providers although diagnoses are not independently verified. This study was set to examine the validity of self- and caregiver-reported autism diagnoses. Electronic medical records (EMR) of 254 SPARK participants (77.6% male, age 10.7 years) were abstracted. Using two different methods, confirmation of ASD diagnosis in EMRs was obtained in 98.8% of cases. Core clinical features recorded in EMRs were typical of autism samples and showed very good agreement with SPARK cohort data, providing further evidence of the validity of clinical information in the SPARK database. [ABSTRACT FROM AUTHOR]

Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries. [ABSTRACT FROM AUTHOR]

This descriptive study aimed to determine the perspectives of nursing students regarding sexual development of children with intellectual disability. This study was conducted with 455 nursing students at the Faculty of Health Sciences in the Western Black Sea Region of Turkey over the period September–November 2020. Data were collected from the students by e-mail. The instruments used to collect the data were a "Personal Charateristics Form" and the "Perspectives on Sexual Development of Children with Intellectual Disability Questionnaire," which were prepared by the researchers. In this study, 55.4% of the students had previously received training on sexual development and health, and the source of education for 41.5% consisted of the courses taken in their undergraduate program. Of the students, 23.1% did not wish to communicate with children with intellectual disability or their parents about sexual development, 76.9% felt inadequate in their communication with children and parents about sexual development, 46.2% felt they could identify deviations in sexual development in children with intellectual disability, and 81.5% believed that children with intellectual disability were more vulnerable to sexual abuse. The viewpoints of 4th-year students about sexual development of children with intellectual disability were more positive. Sexual development education should be included in the nursing undergraduate curriculum from the first year of the program. [ABSTRACT FROM AUTHOR]

Postsecondary education (PSE) programs serving individuals with intellectual disabilities (ID) aim to improve life outcomes by increasing skills in three key areas: academics, independent living, and employment. To ensure that PSE programs are successful, ongoing evaluations are necessary. It is particularly important to gather parental perspectives given the integral role they play regarding decision making for students with ID. This qualitative study analyzed data from 58 interviews conducted with parents whose child was enrolled in a PSE program nested within a large public university. Thematic analysis with a deductive approach was the established theoretical model used to guide the analysis. Themes related to capability, opportunity, motivation, and behavior are presented, and future recommendations for PSE programs are discussed. [ABSTRACT FROM AUTHOR]

The transition from adolescence to adulthood may be a challenging period for all young people, yet, for youth with autistic spectrum disorder (ASD) it may present some additional challenges. Developing a more coherent sense of the self, defining one's values and having a sexual awakening are all important processes for the passage from youth to an adult life. People with ASD have difficulties in the aforementioned areas and also face additional risks for sexual exploitation or even abuse. Those challenges underline the importance of sexual education for individuals with ASD. The aim of this case study is to systematically investigate the effectiveness of a behavior analytic intervention in helping an adolescent with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) improve in the area of sexual behavior and at the same time minimize his inappropriate behavior. Specifically: (a) to develop a verbal repertoire pertaining to adolescence and sexuality, (b) to improve personal hygiene skills, (c) to develop or improve self-satisfaction related to sexual expression, (d) to decrease inappropriate behavior pertaining to sexuality, and (e) to train the father to undertake a part of the intervention that would be unethical for the researcher to contact—monitor the participant's masturbation practices. Using a multiple-baseline-across-response-categories experimental design, it was demonstrated that the majority of the aforementioned goals were attained, yet, one goal—the decrease of inappropriate behavior—was only temporarily reached. [ABSTRACT FROM AUTHOR]

Since 2016, Promotion of Human Rights of Persons with Disabilities in Bangladesh (PHRPB) has been working to include people with psychosocial disabilities in their community-based inclusive development work, and to increase access to formal mental health care. Field visits were carried out to PHRPBD catchment areas in Dhaka and Chittagong for a case study on the integration of mental health into community-based rehabilitation (CBR). This paper synthesizes the results of twenty-five semi-structured interviews carried out as part of the case study. Participants included people with psychosocial disabilities, intellectual disabilities, epilepsy or other cognitive impairments and their carers as needed. Interviews were audio-recorded, transcribed and translated from Bangla to English, then hand-coded for content analysis. Results were organized into five overarching categories: (1) explanatory models, (2) help-seeking behaviors, (3) impact of services, (4) challenges and barriers to improving mental health, (5) recommendations of users and carers. Respondents either had no explanation for why service users had become unwell or attributed it to physically and/or emotionally traumatic events or supernatural causes. Before attending PHRPBD's mental health services, most had visited formal or informal health care providers, often with disappointing results. Despite positive feedback on PHRPBD's services, participants identified ongoing challenges. Stigma, discrimination and human rights abuses persist and are compounded by issues of gender inequality. Participants also identified barriers and made recommendations specific to the program itself, mainly regarding accessibility (e.g., cost, distance, frequency). This study adds to the limited body of qualitative research on mental health in Bangladesh, reinforcing previous findings on explanatory models and health-seeking behaviors while providing new insights into the impact of a CBR program in this context. Feedback of service users and carers suggests that CBR may indeed be a useful approach to increase access to services in Bangladesh for people with psychosocial or intellectual disabilities, epilepsy or other cognitive impairments. However, this program is not without its limitations, some of which are the product of broader issues within the mental health system and others of the social and cultural context. More research is needed to formally evaluate this and other CBR programs in the Global South. [ABSTRACT FROM AUTHOR]

The high prevalence of people with Intellectual Disability (ID) fosters the recognition of their health, work, and social needs. However, few studies have focused on the assessment of their affective and sexual needs (a basic personal need and universal right). Even though the current literature suggests changes in social attitudes toward this population, it is unclear whether these changes have actually occurred and their impact on the development of healthy and non-stigmatized sexuality. This question is particularly relevant due to the lack of a sound measure to assess this shift in the social consideration of the sexuality of people with ID. Thus, this preliminary study focuses on the design and validation of a reliable measure to assess attitudes toward the sexuality of people with Intellectual Disability. This study comprises 1103 participants (43.3% men; 56.7% women) between 20 and 92 years old, classified into three groups: parents or relatives of people with ID, professionals working with ID individuals, and the general population. Results from Exploratory Factor Analysis (EFA) yielded three factors explaining 49.19% of the scale variance: Normalizing Attitudes (NOR-A), Negative Attitudes (NEG-A), and Paternalistic Attitudes (PAT-A). This three-factor structure was subsequently confirmed through Confirmatory Factor Analysis (CFA). Regarding internal consistency, Cronbach's alpha values ranged between 0.66 and 0.86. In conclusion, this research demonstrates that the ASEXID is useful and reliable for the assessment of relatives', professionals', and societal attitudes toward the sexuality of people with ID, contributing to the assessment of a potential paradigm shift in attitudes toward the affective sexual education of people with this condition. [ABSTRACT FROM AUTHOR]

Sexuality expression and experiences are an often-ignored component of health and well-being for adults with intellectual disabilities (ID). Adults with ID have gaps in their sexuality education, and experience restrictions from parents and caregivers exploring their sexuality. However, parental control does not deter adults with ID from desiring sexual experiences, and instead often leads to secretive and potentially exploitative relationships. Although this pattern is clear, we lack an understanding of the impact of parental attitudes on sexuality education and expression for adults with ID. The current study examines parental experiences attending to sexuality education and sexuality expression for adults with ID compared to their typically developing adult siblings. A mixed methods design was used including an online survey with 50 parents nationwide, and follow-up phone/video conferencing interviews with a subset of 20 parents. Findings from this study indicate that parents are more engaged with adults with ID and struggle to determine the appropriate level of sexuality education they should be providing to individuals with ID. Findings add to our understanding of the important role of the parent, and provides insight into training to support parents as they navigate these experiences. [ABSTRACT FROM AUTHOR]

Limited research has examined methods to investigate the views, preferences and experiences of young people with autism and complex needs. The aim of this study, based at a specialist residential school in England, was to develop and pilot an innovative method for this purpose—a 'Talking Wall'—that was trialled over a 6-month period. Thematic analysis of data from focus groups and semi structured interviews with staff, combined with structured observations of pupils, resulted in three key themes: supporting the expression and evaluation of emotions that underlie preferences; recognising the impact of transitions; and the important role of familiar adults in interpreting communication bids. These positive, initial findings suggest the Talking Wall approach merits further development and evaluation. [ABSTRACT FROM AUTHOR]

This qualitative study was carried out in order to examine the opinions of mothers on sexual education and development in children with intellectual disability. Participants were drawn from the pool of the mothers of 10–15 year-old children studying in a private education and rehabilitation center in Zonguldak/Turkey between February and June 2019; the sample included 14 mothers who consented to participate in the study. A questionnaire and a semi-structured interview form prepared by the researchers according to literature were used in the study. During the interviews, the mothers were asked questions such as, "How does your child develop sexually in adolescence?" The answers were noted by the both researchers. Content analysis of the data retrieved was performed by the researchers, who identified and interpreted the main themes. The knowledge levels of the mothers concerning the sexual development of their children with intellectual disability were found to be low, and the mothers experienced problems in the management of their children's behaviors and required education on this issue. Providing education about sexual development to both children with intellectual disability as well as their mothers may facilitate more effective management of sexual health concerns in this group of adolescents. [ABSTRACT FROM AUTHOR]

In many aging families, siblings provide important support to adult brothers or sisters with an intellectual disability. However, this presents new challenges that are affected by past relationships and roles, as well as by the current situation and changes brought on by aging. This study aims to explore the ways in which middle aged typical siblings of adults with intellectual disability shape and perceive their role within the aging family. An interpretive phenomenological analysis was used. Data collection was performed through in-depth, semi-structured interviews with 17 middle aged siblings of adults with intellectual disabilities, followed by a thematic content analysis. Four themes were identified: (1) Sibling multiple roles along the life course; (2) The sibling's role in the changing alignment of aging families living with disabilities; (3) A retrospective examination of the sibling's responsibility; and (4) What does the future hold for siblings? Middle aged siblings in the aging family cope with multiple roles, which may elevate caregiving loads. At this point of their life, middle aged siblings come to acknowledge the complexity of their experience that involves love, compassion, stress, and burden at the same time. [ABSTRACT FROM AUTHOR]

Sexual desire is a natural and important human need, and, as part of human diversity, people with intellectual disability (PWID) have the right to have sex, marry and bear children. However, due to the dependence of PWID on their caregivers, their sexuality is influenced by the opinions of their caregivers. This qualitative study was conducted with the aim of discovering opinions of caregivers about the sexual needs and the issue of marriage in women with intellectual disability (WWID). Sampling was conducted in three intellectual disability care centers, two rehabilitation centers and a school of exceptional students in Tehran, Iran. Deep and semi-structured interviews were conducted with 21 intellectual disability caregivers. Data was analyzed using the content analysis method of Zhang and Wildemuth. Data analysis led to the emergence of two main themes and four categories. The first theme was "non-responsive sexual consciousness" with two categories: "positive thinking about the sexual needs of WWID" and "cultural weakness in accepting satisfaction of sexual needs in WWID"; and the second theme was, "the colorless dream of marriage", with the categories of "wedding dress, dream of WWID" and "marriage of WWID, a challenging issue". In spite of the desire of WWID for marriage, this issue is controversial from the viewpoint of caregivers. This difference in opinion is due to the lack of knowledge of caregivers about the abilities of PWID, insufficient information of WWID regarding marriage, lack of government support for facilitating the conditions of marriage of PWID and lack of social support in this area. [ABSTRACT FROM AUTHOR]

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers' perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults' behavior and determined what was appropriate or not with regards to the young adults' sexuality. Concerns about the young adults' future care were central in the family caregivers' responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID. [ABSTRACT FROM AUTHOR]

Background: Levels of aggression are high in residential settings for juveniles with Mild Intellectual Disability (MID). As a result, treatment is less effective, aggression causes injury, traumatic experiences and longer inhabitation for juveniles. Additionally, inpatient aggression has been linked to burnout and stress among group workers, which has negative consequences such as less job satisfaction or poorer work performance Objective: Therefore, it is crucial to diminish aggressive incidents in these settings and to find a way for staff how to respond to aggression properly. Methods: As there is no intervention method which tackles all of the referred problems efficiently, a new method Non-violent Resistance for MID was introduced into three residential settings for juveniles with MID, in a quasi-experimental stepped wedge design. Reports of aggressive incidents were assessed seven times before, during and after the training in NVR-MID on group level. Multilevel analyses were carried out in order to assess the development of the aggressive incidents over time. Results: Aggressive incidents decreased significantly in time during and after training in NVR-MID, this decrease is seen in all three institutions. Thus, regardless of resident's age, gender or IQ, NVR-MID seemed successful in diminishing aggressive incidents. Furthermore, a significant interaction effect was found between institution and time, indicating that regardless if incidents of aggression were relatively high at baseline, decrease in incidents was similar to institutions where incidents were relatively low on baseline. Conclusions: Implementing NVR-MID into residential settings for juveniles with MID and comorbid behavioral problems might help to decrease aggressive incidents. [ABSTRACT FROM AUTHOR]

Transitioning to post-secondary education is often challenging for students with intellectual and developmental disabilities (IDD). To address this, Florida International University, specifically FIU Embrace, piloted the Embrace Mentoring Program (EMP), which provided unique role-specific workshops to both faculty/staff mentors, and student mentees with IDD. A mixed-method design was used to analyze knowledge acquisition and participant perceptions of the workshops. Quantitative findings indicated knowledge improvement in a key area for mentors, while qualitative data demonstrated a positive response to workshop content, and highlighted areas of improvement for future workshops. Ultimately, the results from the pilot EMP demonstrated promise in supporting students with IDD towards academic and career-related goals, by providing mentorship training to both mentors and mentees. [ABSTRACT FROM AUTHOR]

The goal of this study is to propose the Siblings' Experience Quality Scale (SEQS), a measure for the assessment of cognitive, emotional and behavioral experience of adult individuals having a brother or sister with an intellectual/developmental disability, chronic physical illness or mental illness, on five dimensions: Closeness, Conflict, Jealousy, Self-Marginalization, and Worry. A sample of 213 Italian adult typically developing siblings (ages 18–69 yrs.) was used to demonstrate the psychometric validity of the scale. Results of confirmatory factor analysis, which resulted in high scores of goodness of fit, supported five identifiable factors reflecting the theoretically-based constructs of the SEQS and demonstrated convergence with the general construct of siblings' quality of experience. Correlations with the Lifespan Sibling Relationships Scale (LSRS), the Beck Depression Inventory II (BDI-II), and the Aggression Questionnaire (AQ) demonstrated the construct, convergent, and discriminant validity. In particular, Jealousy, Conflict, Worry, and Self-Marginalization were negatively correlated with LSRS, while Closeness was positively correlated with LSRS; Worry and Self-Marginalization were positively correlated with BDI-II; and the majority of the SEQS subscales were not correlated with the AQ. Furthermore, siblings of individuals with intellectual/developmental disability showed higher scores on Closeness and Worry, while siblings of individuals with chronical physical illness showed higher scores on Jealousy, and siblings of individuals with mental illness showed higher scores on Conflict. Finally, siblings with higher Self-Marginalization and Worry scores showed higher levels of internalizing problems, as well as anger and hostility. Implications for research and policy are discussed. [ABSTRACT FROM AUTHOR]

The purpose of this mixed methods pilot study was to examine the sexual health needs, knowledge, and access to resources for students with intellectual and/or developmental disabilities (IDD) and their support staff in an inclusive postsecondary education (IPSE) program. Four college students with IDD and sixteen support staff from an IPSE program in the Southeast United States were recruited in 2018. Semi-structured interviews were conducted with students. Online surveys, which contained open-ended and Likert scale items, were administered to all support staff. Students and staff both reported that students had limited sexual health knowledge, were uncomfortable discussing sexual health, and reported little interest in the topic. Both students and staff provided recommendations for creating inclusive sexual health programs and marketing strategies. Students have limited information about sexual health and are not included in sexual health programming in meaningful ways. Staff lack the training needed to address students' sexual health questions. This study also makes a significant contribution to the dearth of literature on the sexual health of college students with IDD. [ABSTRACT FROM AUTHOR]

The sexuality of people with disabilities is often conceptualized as asexual. Furthermore, public discourse regards people with disabilities as highly prone to sexual abuse. The few studies that contemplate on parents' of people with intellectual disability (ID) point of view uncover the parents' perceptions towards their offspring's sexuality. Therefore, the purpose of this study was to examine the sexuality of adolescents with ID from their parents perceptions. The study was conducted using a phenomenological approach and included 21 in-depth, semi-structured interviews with parents of adolescents with ID. The interviews were analyzed using thematic analysis. Parents' perceptions of their children's sexuality and their involvement concerning sexuality reveal dilemmas and tensions that remain unresolved. Although some parents did tend to treat their children's sexuality as non-normative and as a source of problems and thus ignored, prevented, and limited their children's sexual expressions, other parents presented different perspectives, acknowledging the sexuality of adolescents with ID and their right to express it. The findings also reveal a new and exciting insight related to the conceptual space of physical contact between parents and children, which moves between physical expressions of love and care and feelings of prohibited sexuality. Professionals working with people with ID and their families should be allowed to create a professional dialogue that would enable the discussion and clarification of the dilemmas and challenges related to the subject. [ABSTRACT FROM AUTHOR]

Erroneous perception of "disability" in typically developing children leads to the exclusion of children with intellectual disabilities in sport. Therefore, the present study aimed to investigate the effectiveness of inclusive soccer (INS) program on ameliorating adverse behavior in children with and without intellectual disabilities (ID). Participants were 40 children, with half having intellectual disabilities (n = 20). Both the experimental and comparison groups consisted of 10 children with and without ID, respectively. The experimental group participated in an INS whereas the comparison group participated in a segregated soccer program. The Withdrawn Behavior Checklist (WBC) and Social Distance Scale (SDS) were measured repeatedly for children with and without ID, respectively. A mixed-design ANOVA was conducted for data analysis. There were significant main effects on time, group, and interaction for both SDS and WBC of the experimental group, except between-group difference on WBC. The comparison group did not show any significant change. The social distance of children toward peers with ID and withdrawn behavior of children with ID have been reduced. The INS could provide benefits for the psychosocial development of children on both populations toward inclusion. [ABSTRACT FROM AUTHOR]

Research has documented that pain and physical discomfort commonly occur in persons with intellectual and developmental disabilities (IDD). However, many individuals are unable to communicate their distress and achieve symptom relief. The present study was a descriptive and qualitative evaluation of care providers to identify how they detected pain in the adults they supported at a human services organization including the type of pain indicators and influence of communication ability on reliably reporting pain. The study combined quantitative and qualitative ratings within a cross-validation descriptive methodology that also elicited care provider recommendations for improving pain assessment. We report findings, summarize common themes, and suggest future directions for clinical practice and research. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities (IDD) are at a high risk for engaging in self-injurious behavior (SIB). Prognosis is poor when SIB emerges early. Limited research exists on interventions teaching parents how to manage their young child’s SIB. This investigation assessed the feasibility of adapting an applied behavior analytic parent training program with 11 parents of children 1-5 years of age with IDD and SIB. Quantitative and observational measures were used to assess outcomes; semi-structured interviews assessed caregiver satisfaction. Outcomes yielded preliminary data suggesting the adapted curriculum was feasible and acceptable to parents. Initial efficacy outcomes yielded decreases in SIB and observed negative parent-child interactions on pre- and post-measures. Qualitative data provided areas for further curriculum refinement. [ABSTRACT FROM AUTHOR]

Empirical research that addresses sexual orientation in people with an intellectual disability (ID) is limited, and very little is known regarding the personal experiences of lesbian and bisexual women with ID. This study set out to answer the question: What are the experiences of lesbian and bisexual women with a mild intellectual disability in the Netherlands? Ten lesbian and bisexual women (average age of 33 years) with a mild intellectual disability took part in our study comprising of semi-structured interviews. Participants reported that they had found it hard to talk to others about sensitive subjects such as their sexuality, and had been left to figure out information regarding their sexual orientation without support or guidance. Our results point to a lack of information, sexual education and role models when it comes to lesbian sex and women with an intellectual disability. Social contact was often limited, and participants experienced difficulties finding a partner. Furthermore, participants often had to cope with mental health problems and had struggled with loneliness, depression and addiction. Last but not least, our participants reported that they had been discriminated against. Coming out (revealing your sexual orientation) is not easy when you have an intellectual disability. To enable women with ID who have lesbian or bisexual feelings to understand and secure their sexual rights in their daily lives is important. Therefore, it is necessary to provide support in the following domains: sexual education and training, social contact and assertiveness. [ABSTRACT FROM AUTHOR]

Adolescents and youth with disabilities in South Africa still lack access to sexual and reproductive health and rights services including comprehensive sexuality education, which may increase their vulnerability to SRHR issues such as HIV and sexual violence. This is exacerbated for learners with intellectual disabilities whose educators often lack skills and tools to accommodate these learners in comprehensive sexuality education lessons. The following paper outlines the findings of a formative evaluation of an innovative sexuality training approach for educators of learners with diverse disabilities (Breaking the Silence approach). This approach was developed and piloted with educators across eight schools for learners with intellectual disabilities in KwaZulu-Natal, South Africa. The paper discusses the educators’ understanding and experiences of using this approach. The findings revealed that although educators were able to implement parts of the approach, contextual factors impacted the degree of implementation. These factors were related to perceptions of socio-cultural norms, interpersonal engagement with peers and management, the structural environment of school settings, and the wider community setting. Educators began to address cultural taboos related to talking about sexuality, but were challenged by untrained staff and the larger socio-cultural context, which includes a heighted risk of sexual violence against their learners. The paper concludes with recommendations for a further investigation of the approach within a whole school setting considering the needs of educators to not only acquire skills and knowledge but also to address their larger socio-cultural context in which they have to implement comprehensive sexuality education. [ABSTRACT FROM AUTHOR]

Individuals with autism spectrum disorder (ASD) often meet criteria for at least one additional psychiatric disorder. The present study evaluated the utility of the Mini International Neuropsychiatric Interview (MINI) in assessing co-occurring psychiatric disorders in children, adolescents, and young adults with ASD. Ninety-one percent of children/adolescents and thirty-one percent of young adults were diagnosed with one or more co-occurring diagnoses using the MINI. MINI diagnostic rates were comparable to those found in the literature on children/adolescents with ASD; however, in young adults, MINI diagnostic rates were lower relative to rates found in the literature on young adults with ASD. Implications for treatment, transitioning to adulthood, and the need for instruments developed specifically to diagnose co-occurring disorders in ASD are discussed. [ABSTRACT FROM AUTHOR]

Initial studies have presented the Music-based Scale for Autism Diagnostics (MUSAD) as a promising DSM-5-based observational tool to identify autism spectrum disorder (ASD) in adults with intellectual disability (ID). The current study is the first to address its clinical utility in a new sample of 124 adults with ID (60.5% diagnosed with ASD). The derived diagnostic algorithm differentiated well between individuals with and without ASD (sensitivity 79%, specificity 74%, area under the curve = 0.81). Inter-rater reliability, assessed by the scorings of four independent experts in 22 consensus cases, was excellent (ICC = 0.92). Substantial correlations with scores from other ASD-specific measures indicated convergent validity. The MUSAD yields accurate and reliable scores, supporting comprehensive ASD diagnostics in adults with ID. [ABSTRACT FROM AUTHOR]

The present study aims to develop an assessment instrument for children with Autism Spectrum Disorders (ASD) in Turkey based on the Autism Behavior Checklist (ABC). Validity and reliability studies of Adapted ABC (AABC) were conducted on 969 children with ASD and 164 children with intellectual disability from 21 cities in Turkey. Exploratory and confirmatory factor analyses revealed a two-factor structure. The correlation of the AABC with the Gilliam Autism Rating Scale-2-Turkish Version supported criterion-referenced validity. Reliability analyses demonstrated that test–retest, internal consistency, and item discrimination reliability levels met the required conditions. Finally, the score equivalents of the percentiles required to use the instrument in accordance with the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM V), were determined. [ABSTRACT FROM AUTHOR]

Purpose Participation in regular paid jobs positively affects mental and physical health of all people, including people with limited work capacities (LWC), people that are limited in their work capacity as a consequence of their disability, such as chronic mental illness, psychological or developmental disorder. For successful participation, a good fit between on one hand persons' capacities and on the other hand well-suited individual support and a suitable work environment is necessary in order to meet the demands of work. However, to date there is a striking paucity of validated measures that indicate the capability to work of people with LWC and that outline directions for support that facilitate the fit. Goal of the present study was therefore to develop such an instrument. Specifically, we adjusted measures of mental ability, conscientiousness, self-efficacy, and coping by simplifying the language level of these measures to make the scales accessible for people with low literacy. In order to validate these adjusted self-report and observer measures we conducted two studies, using multi-source, longitudinal data. Method Study 1 was a longitudinal multi-source study in which the newly developed instrument was administered twice to people with LWC and their significant other. We statistically tested the psychometric properties with respect to dimensionality and reliability. In Study 2, we collected new multi-source data and conducted a confirmatory factor analysis (CFA). Results Studies yielded a congruous factor structure in both samples, internally consistent measures with adequate content validity of scales and subscales, and high test-retest reliability. The CFA confirmed the factorial validity of the scales. Conclusion The adjusted self-report and the observer scales of mental ability, conscientiousness, self-efficacy, and coping are reliable measures that are well-suited to assess the work capability of people with LWC. Further research is needed to examine criterion-related validity with respect to the work demands such as work-behaviour and task performance. [ABSTRACT FROM AUTHOR]

Objective Vocational rehabilitation measures support youth and young adults with disabilities to obtain vocational training and to enter the labor market. In Germany, a growing number of young people with psychological disabilities in vocational rehabilitation can be observed. The study at hand focuses on this group and examines their (un-)unemployment biographies before vocational rehabilitation, their access to vocational rehabilitation and identifies their individual challenges within the process of vocational rehabilitation. Methods Using a multi-methods approach, we analyze representative administrative data of the German Federal Employment Agency as well as biographical interviews conducted with young rehabilitants. We compare the population of young rehabilitants with psychological disorders to those with other disabilities in terms of vocational rehabilitation and initial labor market entry in order to get a representative picture about their school to work transitions. Since rehabilitants with psychological disabilities tend to be older than the remaining population, analyses are stratified by age groups. In addition, qualitative in-depth interviews provide an additional and deeper understanding of specific employment barriers youth with psychological disorders have to overcome. Furthermore, the individual perspective gives insight on how the crucial transition from school to work is perceived by the population under study. Results The pathway into vocational rehabilitation of youth with psychological disorders is often characterized by obstacles in their transition from school to work. During rehabilitation, it appears essential to provide psychological stabilization along with vocational training. Although their average level of education is higher than those of other rehabilitants, labor market transition after (often company-external) vocational training challenges many young people with psychological disabilities, leaving many of them with comparatively poor labor market prospects. Conclusions Young persons with psychological disabilities, who come from regular schools or dropped out from regular school or university, seem to find their way to vocational rehabilitation more indirectly. Furthermore, vocational rehabilitation itself is often prolonged for those with psychological disabilities possibly due to a corresponding stabilization process. However, vocational rehabilitation can be a core element within the stabilization process of a psychological disease. [ABSTRACT FROM AUTHOR]

Intractable aspiration is a life-threatening medical problem in patients with severe motor and intellectual disabilities (SMID). Laryngotracheal separation (LTS) is a surgical procedure for the treatment of intractable aspiration which separates the upper respiratory tract from the digestive tract. We performed LTS for 14 patients with SMID to prevent intractable aspiration, performing two types of operation. The standard diversion procedure connected the upper trachea to the esophagus. The modified diversion includes closure of the proximal trachea and a high tracheostomy, avoiding a tracheoesophageal anastomosis. LTS was performed on 14 patients. Operations performed before the LTS included tracheostomy in four patients, fundoplication in six and gastrostomy in two. A standard diversion was performed in 11 patients and a modified diversion in 3. There were no operative complications. Eleven patients were safely transferred to home-care after their LTS. Twelve patients are still alive and two died some months after operation. One patient died from their primary disease and the other died a tracheo-innominate artery fistula (TIAF). We recently experienced a patient who was at high risk of developing a TIAF. LTS is an effective operation, preventing intractable aspiration in patients with severe motor and intellectual disabilities. The results are similar for the standard or modified diversion procedure with the procedure chosen being related to the initial tracheostomy site. The most serious complication is a lethal TIAF. [ABSTRACT FROM AUTHOR]

Background: Two measures in the English Mental Health Act allow requirements to be imposed upon patients living in the community. These are Guardianship (Section 7) and Supervised Discharge (Section 25A).Aims: The paper aims to compare patients with mental illnesses, made subject to Guardianship or Supervised Discharge.Method: Data on patient characteristics, impairment, needs and interventions were collected from keyworkers in a random national sample of Trusts and local authorities. Ratings were obtained on standardised measures of disability, impairment and needs.Results: Patients placed on Supervised Discharge were more likely to have problems of treatment compliance and drug misuse, whilst those on Guardianship were more likely to have problems of social welfare and higher ratings of disability and impairment. Supervised Discharge has a higher proportion of African-Caribbean patients. Interventions delivered are rated as effective for both measures.Conclusions: Legal changes proposed in England include a single power for supervision in the community. This should not mean a focus on risk management to the neglect of social welfare interventions. [ABSTRACT FROM AUTHOR]

Comprehensive sexuality education is seen as a key intervention to address the high HIV-incidence rate and low knowledge among young people in South Africa, yet this lacks inclusion of learners with disabilities. At the same time, educators of learners with disabilities experience cultural barriers and lack skills and knowledge on how to deliver sexuality education in accessible formats. In response, the Breaking the Silence approach, a curriculum implementation and disability-accommodating approach, was developed and tested. This paper presents findings from a formative evaluation using in-depth interviews with educators from eight “schools for learners with special educational needs”. The paper focuses on their experience with implementing the approach. The analysis used conventional content analysis and NVIVO software. Educators conceptualized sexuality education within a risk-protection discourse. They revealed that the training and tools enabled them to provide sexuality education in accessible formats, tackle difficult topics such as sexual orientation and masturbation, and improved awareness and assertiveness within their learners. Educators identified the need for further development including a whole school approach, adjustments to differentiating developmental stages and addressing gender-specific topics. Through its application within the South African mainstream Life Orientation curriculum, this approach lends itself for further development and testing through implementing the approach within a whole school setting and ongoing support that will not only drive change in educators’ skills and knowledge but also drive the needed shift in cultural norms and values. [ABSTRACT FROM AUTHOR]

The article discusses a study on the usefulness and usability of tools designed to assess the sexual knowledge of people with intellectual disability (ID). Topics covered include the limited sexual knowledge of people with ID serving as a barrier to sexual health, the preference by clinicians for using sexual knowledge assessment tools to support their work, and the concerns among clinicians about response bias and acquiescence associated with sexual knowledge assessment tools.

The article discusses a study on the views of young people with intellectual disability (ID) on sexuality education. Topics include the study involving young people with ID participating in transition programs in Australia, the difficulty for such people to form social and intimate relationships, and the high risk for women with ID to experience sexual abuse and unwanted or unplanned pregnancies. Also mentioned is how peer education allows young people with ID to learn about their sexuality.

Whilst the transition from school to adult roles can be challenging for any adolescent, for those with an intellectual disability it can present as a particularly difficult time both for the individual and their family. The process may involve coordinated planning, collaboration and decision-making among school staff, families and community agencies. This mixed-methods study utilised information from two cohorts: young people with Down syndrome in Western Australia ( n = 190) and young people with intellectual disability (of any cause) in Queensland, Australia ( n = 150). The parent-report questionnaires administered in both states comprised two parts: part 1 collected information about the individual with intellectual disability including information on health, functioning and service needs, and about specific transition related issues; and part 2 collected information about the health and well-being of their family. The majority (87 %) of parents said that they were involved in decision-making about transition planning but less than two-thirds (59.5 %) of young people were involved in this process. The three most helpful strategies indicated by parents that assisted with transition planning related to the provision of more information about financial assistance, the school transition program and the building of informal community-based supports. A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood, their difficulty navigating services and programs, issues and challenges around their young person building connectedness, strain on family wellbeing and finances and worry about the longer term future. [ABSTRACT FROM AUTHOR]