Perceptions of people with intellectual and developmental disabilities about COVID-19 in Spain: a cross-sectional study.

BACKGROUND: As the world battles COVID-19, there is a need to study the perceptions of people with intellectual and developmental disabilities (IDD) about the effects of the pandemic and associated lockdown on their lives. This work explores the perceptions of Spaniards with IDD during the lockdown with respect to four topics: access to information, emotional experiences, effects on living conditions and access to support. METHODS: The topics were explored using a subset of 16 closed-ended questions from an online survey. In total, 582 participants with IDD completed the survey. The frequencies and percentages of responses to the questions were calculated, and chi-square tests performed to explore the relationship between participants' sociodemographic characteristics and responses. Given that people differed in the way in which they completed the survey, the relationship between participants' responses and completion method was also analysed. RESULTS: Participants reported that the pandemic and subsequent lockdown have had a deleterious effect on their emotional well-being (around 60.0% of participants) and occupations (48.0% of students and 72.7% of workers). Although access to information and support was reportedly good overall, being under the age of 21 years and studying were associated with perceptions reflecting poorer access to information (V = .20 and V = .13, respectively) and well-being support (V = .15 and V = .13, respectively). Being supported by a third party to complete the survey was consistently related to perceptions of worse outcomes. CONCLUSIONS: The study yielded data on the perceptions of people with IDD regarding the effects that COVID-19 and the subsequent lockdown have had on their lives. Suggestions on how to overcome the difficulties reported and future lines of research are discussed.

Conceptual model of sport-specific classification for para-athletes with intellectual impairment.

The present paper describes the conceptual basis of evidence-based classification of para-athletes with intellectual impairment (II). An extensive description of the theoretical and conceptual foundation of the system as currently conceived is provided, as are examples of its applications in the three sports included in the Paralympic programme for II-athletes in 2020 (i.e., athletics, swimming and table tennis). Evidence-based classification for II-athletes is driven by two central questions: i. How can intellectual impairment be substantiated in a valid and reliable way, and ii. Does intellectual impairment limit optimal sport proficiency? Evolution of the system and current best practice for addressing these questions are described, and suggestions for future research and development are provided. Challenges of understanding and assessing a complex (multifaceted and intersectional) impairment in the context of sport also are considered.

"It's ok, mom. I got it!": Exploring the experiences of young adults with intellectual disabilities in a postsecondary program affected by the COVID-19 pandemic from their perspective and their families' perspective.

Students' resilience in a postsecondary program for individuals with an intellectual disability impacted by the COVID-19 disruption and the challenges they faced during this time was captured in the context of social network analysis interviews that included students' and families' experiences as they managed the pandemic. Students' experiences spoke to their resilience in using the skills they gained through the program to navigate the COVID-19 disruption even though it was sometimes tricky. Parents' experiences revealed their increased confidence and sense of pride in their adult children when they observed growth in independence, self-determination, and familiarity with technology. Innovative and engaging instructional practices and e-mentoring support offered by peer mentors motivated students in their academics and encouraged their social development during this time. Student and parent experiences offer hope that young adults with an intellectual disability can gain skills in a postsecondary program that better prepares them to meet life's challenges.

Language nutrition for language health in children with disorders: a scoping review.

The quantity and quality of child-directed speech-language nutrition-provided to typically-developing children is associated with language outcomes-language health. Limited information is available about child-directed speech to children at biological risk of language impairments. We conducted a scoping review on caregiver child-directed speech for children with three clinical conditions associated with language impairments-preterm birth, intellectual disability, and autism-addressing three questions: (1) How does child-directed speech to these children differ from speech to typically-developing children? (2) What are the associations between child-directed speech and child language outcomes? (3) How convincing are intervention studies that aim to improve child-directed speech and thereby facilitate children's language development? We identified 635 potential studies and reviewed 57 meeting study criteria. Child-directed speech to children with all conditions was comparable to speech to language-matched children; caregivers were more directive toward children with disorders. Most associations between child-directed speech and outcomes were positive. However, several interventions had minimal effects on child language. Trials with large samples, intensive interventions, and multiple data sources are needed to evaluate child-directed speech as a means to prevent language impairment. Clinicians should counsel caregivers to use high quality child-directed speech and responsive communication styles with children with these conditions.

Medication management in the context of mental illness: an exploratory study of young people living in Australia.

BACKGROUND: Young people face significant challenges when managing a mental illness, such as acquiring treatment autonomy, being inexperienced users of the healthcare system and associated peer-related stigma. While medication use can be challenging in its own right, there is comparatively little information about the associated experiences and needs of young people with mental illness, particularly in the Australian context. This exploratory study will provide valuable insight into how this group is currently supported in relation to medication use. METHODS: Young people (aged 14-25 years) who had used a prescription medication for any mental illness for a minimum of 2 months were eligible to participate in this qualitative exploratory study. Semi-structured interviews were conducted between October 2017-September 2018 in consultation rooms at two youth-focused mental health support organisations in Brisbane, Queensland. Interview questions explored how participants managed their medication and related experiences. Interviews were transcribed verbatim and descriptively analysed using thematic analysis. RESULTS: Eighteen young people discussed their lived experience during interviews averaging 50 min in duration. Finding the right medication that reduced symptom severity with minimal side-effects was identified as a complex experience for many, particularly when there was a lack of information, support or reduced financial capacity. Young people described a range of strategies to manage medication side-effects, changes and to support routine medication use. CONCLUSIONS: Young people persevered with taking medication to manage a mental illness within a healthcare system that does not adequately support this vulnerable population. There remains a clear directive for healthcare professionals to provide credible information that proactively engages young people as healthcare participants, and for policy makers to consider financial burden for this population with limited financial capacity.

Identifying Individuals With Intellectual Disability Within a Population Study.

BACKGROUND: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge. OBJECTIVE: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID. METHODS: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III. RESULTS: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation. DISCUSSION: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

Self-determination and future goals in a sample of adults with intellectual disability.

BACKGROUND: In recent years, increased attention has been directed towards the importance of identifying the future goals of people with intellectual disability (ID) and promoting their abilities to design their future. Consistent with these, the first aim of this study is to investigate the future goals of people with ID in terms of content and temporal distance. Moreover, the second aim of this study is to test the predictive role of self-determination on the number of future goals reported by people with ID. METHODS: In this study, 96 young adults with ID were involved and a mixed method design was chosen. Specifically, qualitative procedures (consensual qualitative analyses) and quantitative procedures (structural equation modelling) were carried out. RESULTS: The results showed that the future goals of people with ID are characterised by different factors related to autonomy, health/well-being, interpersonal relations and personal growth. Moreover, self-determination (assessed with Self-Determination Questionnaire-Version for Adults) predicts a higher number of future goals reported by people with ID. CONCLUSIONS: These results suggest the importance of providing adequate support to the development of self-determination.

'We need to share our stories': the lives of Pakistanis with intellectual disability and their guardians.

INTRODUCTION: The experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically. METHOD: The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice. FINDINGS: Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians. DISCUSSION: We discuss implications for research and practice.

The effects of physical activity or sport-based interventions on psychological factors in adults with intellectual disabilities: a systematic review.

BACKGROUND: Inactivity is a major factor contributing to adverse health in people with intellectual disabilities (IDs). While it is generally agreed that physical activity (PA)/sport-based interventions promote cognitive and social development in the general population, little is known about their specific benefits in adults with ID. The aims of this systematic review were (a) to examine the effects of PA/sport-based interventions on intention, motivation and attitude regarding PA/sport participation in adults with ID and (b) to investigate the influence of these psychological factors on behavioural change (e.g. PA level) and quality of life. METHODS: A systematic review has been conducted searching four electronic databases (i.e. SCOPUS, Web of Science, PubMed and Cochrane Library). Studies were included if written in English, peer reviewed, had primary research data, and measured intention, motivation, attitude, behavioural outcomes or quality of life. RESULTS: Thirteen articles met our inclusion criteria of which 10 explored the effects of PA/sport as part of a multi-component intervention. Most investigated outcomes were exercise self-efficacy and quality of life. Five studies measured exercise self-efficacy, and four of them found significant changes. One study found a significant improvement in quality of life and another study in life satisfaction. We observed lack of sport-based interventions, few data about people with severe ID and limited psychological measures. CONCLUSIONS: Personal and environmental factors are key components of behavioural change. Support of caregivers and individualised instructions may benefit exercise self-efficacy. There is lack of information about the effects of psychological factors on behavioural change and quality of life in adults with ID.

Factors related to preventive COVID-19 infection behaviors among people with mental illness.

BACKGROUND/PURPOSE: Because of the spread of novel coronavirus disease 2019 (COVID-2019), preventive COVID-19 infection behaviors become important for individuals, especially those who are vulnerable. The present study proposes a model to explain the preventive COVID-19 infection behaviors among people with mental illness in Taiwan. METHODS: A cross-sectional design was carried out and 414 patients with mental illness (230 males [55.6%]; mean age = 46.32 [SD = 10.86]) agreed to participate in the study. All the participants completed the Preventive COVID-19 Infection Behaviors Scale, Self-Stigma Scale-Short, Believing COVID-19 Information Scale, Fear of COVID-19 Scale, and Depression Anxiety Stress Scale-21. Regression models and structural equation modeling (SEM) were applied to examine the factors associated with preventive COVID-19 infection behaviors. RESULTS: Both regression models and SEM showed that trust in COVID-19 information sources (standardized coefficient [ß] = 0.211 in regression; ß = 0.194 in SEM) and fear of COVID-19 (ß = -0.128 in regression; ß = -0.223 in SEM) significantly explained preventive behaviors among individuals with mental illness. The SEM further showed that fear of COVID-19 was significantly explained by trust in COVID-19 information sources (ß = 0.220) and self-stigma (ß = 0.454). CONCLUSION: Based on the results, healthcare providers should help individuals with mental illness reduce self-stigma and fear of COVID-19 which would consequently improve their preventive COVID-19 infection behaviors. Moreover, improving trust in COVID-19 information sources for individuals with mental illness may be another method to improve their preventive behaviors.

Causal attribution and coping with parental dominance and deprecation in youth with mild intellectual disability.

Although interactions among parents and Youth with Mild Intellectual Disability (MID) may be stressful at times, most studies focus on the effects of stressful interactions on the parents. This study considers the Youth's perspective - particularly their beliefs about the reason for the parent's actions as well as how they would respond in the situation. The RA-PD test (American Psychologist, 28, 2015, 107) was administered to 151 transition age youth with MID in Poland. The test includes vignettes that describe common situations in which the parent engages in Domination or Deprecation. The participants coping responses, based on a multi-axial approach developed by Hobfoll (Stress, culture, and community. The psychology and philosophy of stress, 1998, Springer, New York, NY), and attributions toward the parental figure in the scenarios, based on Kelley (American Psychologist, 28, 2015, 107), were coded by judges. Correlations between causal attribution and coping response showed a consistent pattern where positive attributions were associated with prosocial coping and negative attributions were significantly related to antisocial coping. The implications for improving coping, especially for Youth with aggressive and passive tendencies, are discussed.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

"I feel that if I didn't come to it anymore, maybe I would go back to my old ways and I don't want that to happen": Adapted sex offender treatment programmes: Views of service users with autism spectrum disorders.

BACKGROUND: The cognitive and behavioural profile associated with autism spectrum disorders (ASD) includes difficulties with social interaction, communication and empathy. Each of these may present barriers to effective participation in sexual offending treatment, leading to poorer outcomes. METHOD: Semi-structured interviews were conducted with 13 men with autism and an intellectual disability (including the borderline range) who had completed an adapted sex offender treatment programme. Grounded Theory was used to explore the men's experiences of treatment and perceptions of risk. RESULTS: The men's perceptions of sexual risk were inextricably linked to constructs of identity and shaped their opinions of treatment effectiveness. Risk of reoffending was conveyed through narratives of changes in self and circumstances and included notions of blame and culpability. CONCLUSIONS: The findings illustrated some clear benefits for men with ASD associated with attending adapted sex offender treatment programmes, including delivery of treatment within groups and opportunities for social development. The study supports the view that difficulties with empathy and cognitive flexibility complicates treatment for sexual offending.

Experiences of going to court: Witnesses with intellectual disabilities and their carers speak up.

BACKGROUND: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. MATERIALS AND METHODS: This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. RESULTS: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. CONCLUSION: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims.

A qualitative inquiry on recovery needs and resources of individuals with intellectual disabilities labelled not criminally responsible.

BACKGROUND: Recovery is a widely accepted paradigm in mental health care, whilst the correctional and forensic-psychiatric field is still searching for foundations for its implementation. Knowledge regarding recovery of persons with intellectual disabilities in secure contexts is limited. This study assesses recovery needs and resources among persons with intellectual disabilities labelled not criminally responsible and investigates the impact of the judicial label on recovery processes. METHODS: A sample of 26 individuals was composed purposively, and in-depth interviews were conducted. Recurrent themes were identified using thematic analysis. RESULTS: Traditional recovery themes emerged from the narratives, next to aspects of recovery in a forensic or correctional context. However, the operationalization and proportional impact are specific for this sample. CONCLUSIONS: The social dimension overarches all other recovery dimensions. The integration of an explicit social rhetoric is imperative, including contextual, relational, interactional and societal dimensions. This offers pathways to reverse the traditional, paternalistic model of exclusion and classification.

Life after release from prison: The experience of ex-offenders with intellectual disabilities.

BACKGROUND: In the UK, little is known about the experience of ex-prisoners with intellectual disabilities. METHOD: A qualitative study was therefore conducted to investigate what life is like for ten men with intellectual disabilities who left prison at least 9 months previously. Semi-structured interviews were employed to explore the men's views of post-prison life, including opportunities/challenges and support received from services. RESULTS: Through interpretative phenomenological analysis, four over-arching themes were constructed: the nature of support and services, the difficulty of staying out of trouble, the importance of family and the need to act the "tough guy". The participants reported being extremely under-supported. They were often hostile about staff who they felt were too focused on their previous crime. CONCLUSIONS: In general, men were very under-supported and the upheavals of post-prison lives appeared to be "normalized" by them. Better understanding of their lives within their social context would benefit their community re-entry.

In pursuit of meaningful occupation: Employment and occupational outcomes for older Irish adults with an intellectual disability.

BACKGROUND: Adults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees. METHODS: This paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS-TILDA study (n = 708). RESULTS: Most people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities. CONCLUSIONS: A focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity.

Remarkable similarities in four list theories of a good life for people with intellectual disability.

A good life is the ultimate goal of a number of theories and approaches to providing supports and services for people with intellectual disability. This article examines four list theories of a good life for people with intellectual disability. Twelve themes of a good life were identified using a basic or conventional content analysis: higher meaning and purpose, respect, rights, social inclusion and belonging, close relationships, contribution, voice and choice, emotional well-being, growth and development, home, materiality, and health. Remarkable similarities in items between these four list theories suggest a broad underlying consensus as to the basic elements a good life for people with intellectual disability.

Connectedness and ICT: Opening the door to possibilities for people with intellectual disabilities.

This study aimed to investigate the experiences of people with intellectual disability (ID) using information and communication technologies (ICTs) and the ways these technologies foster social connectedness. In partnership with a community mental health organization, this qualitative descriptive study explored the experiences of 10 people with ID using ICTs. Participants described how ICTs Opened the Door to Possibilities in their life - ICTs provided an avenue for connecting with other people, a means to pursue personal interests and a tool for organizing everyday life. Opening the door to possibilities was further understood as movement towards digital inclusion for people with ID, conceptualized as the fit between social opportunity and personal skills. We have identified the prominent role social supports play in creating (and constraining) opportunities for digital inclusion, and that digital inclusion has the potential to enable social connectedness and the development of agency. Consideration of the complex interaction between social opportunity and personal skills, and the mediating influence of supports, will enhance the inclusion of people with ID.

Experiences of shame and intellectual disabilities: Two case studies.

Shame is a trans-diagnostic phenomenon that underlies a variety of mental health difficulties. People with intellectual disabilities (IDs) are reported to be one of the most stigmatized and excluded groups in society and are more likely to experience mental health problems than the general population. Consequently, this group may be at a significant risk of shame-related distress. However, there is a lack of research that investigates the experience of shame in people with ID, and there is currently a lack of interventions targeting shame in people with ID. Two case studies were undertaken to document the experiences of stigma, discrimination, and shame in people with ID and to explore how shame may present in this population. Shame was found to be a significant barrier to social inclusion and to contribute towards poor psychological health in people with ID. The development of interventions that specifically target shame in this population is recommended.