Journal of Policy and Practice in Intellectual Disabilities最新文献

The value of experts by experience within the field of intellectual disabilities is receiving greater recognition. This study explored the experiences of peer trainers regarding the impact of being a (1) trainee in a train the trainer course (n = 9), and (2) peer trainer in a Dutch training course (n = 6) aimed towards the self-growth of people with intellectual disabilities. In addition to examining the experiences of peer trainers themselves, we investigated the perspective of coaches (n = 4) regarding the experiences of peer trainers. Peer trainers and coaches were questioned using individual and group interviews. Data were analysed using thematic analysis. Three themes were identified: (1) Growing and flourishing, (2) Performing a meaningful role for your peer and (3) Experiencing reciprocity and a sense of belonging. Working as a peer trainer was valuable and produced several benefits, ranging from increased self-confidence to feelings of belonging and reciprocity.

People with intellectual disability (ID) and/or autism spectrum disorder (ASD) are over-represented in the homelessness population. A lack of available and suitable social housing leads to an over-reliance on a private rental market where high rents are prevalent. Yet, people with ID and/or ASD, are more at risk of living in poverty and as such excluded from the private rental market. The current study reports on the lived experience of homelessness for a sample of people with ID and/or ASD and families supporting adult /children with ID/ASD. Their stories illuminate the complexity and challenges in securing a stable, safe and secure home.

A research project involving 16 children with Down syndrome aged 4–14 approaching mathematics at home was developed during the COVID-19-lockdown in Spain. In the research project a series of 14 short mathematical challenges were designed and delivered in a WhatsApp group used as a communication and documentation tool with the participating families. Videos recorded by them were subsequently analyzed with the purpose of describing and analyzing: (a) the experience children live in contact with informal situations underlying the concepts of number and shape and (b) the engagement of families. The choice of these informal situations is based upon recent research that shows the need to consider the wide range of occasional experiences with mathematical ideas children have in their family prior to schooling. In order to design productive mathematical activities we drew on our past research for the choosing of crucial mathematical issues (whole numbers, plane geometry, and solids). We discuss the evolution in parents from practical help to deep engagement, and the fact that notwithstanding diversity in family contexts, engagement and an especially joyful approach to mathematics emerged. The use of videos opens up a path to the possibility to online learning for children with Down syndrome.

The COVID-19 pandemic has put the lives of people with intellectual and developmental disabilities (IDDs) at risk, including those residing in congregate living settings. This study aimed to explore the experiences of congregate living agencies supporting individuals with IDD when implementing infection control guidance during the COVID-19 pandemic for the purpose of identifying recommendations for future implementation. Interpretive description was the methodological approach used for this qualitative study. Data were collected through a semi-structured focus group with administrative personnel from developmental services (DS) congregate living agencies supporting adults with IDD in Ontario, Canada. Data were analyzed using thematic analysis. Our findings identified successes and challenges related to the implementation of infection control guidelines in practice, as well as strategies used during the implementation of guidelines. Five main themes were identified—Communication, Collaboration, Finding and Managing Resources, Agency Capacity, and Future Considerations. Effective communication and collaboration within agencies, as well as between agencies and local public health units or governing ministries, led to the successful implementation of infection control guidance. Prior experience with pandemics, as well as managers with knowledge of infectious disease and infection control, was crucial in interpreting and implementing COVID-19 infection control guidance. DS agencies experienced successes and challenges when implementing infection control guidelines. The needs of DS agencies and individuals with IDD should be prioritized when developing infection control guidance to ensure that implementation is feasible and appropriate for congregate living settings and the population supported.

People with intellectual disabilities (ID) experience complex medical care needs and high levels of multimorbidity. In mainstream healthcare, these needs might remain undetected leading to unmanaged health problems and avoidable deaths. In the Netherlands, general practitioners (GPs) can refer to specialized ID physicians when ID-specific expertise is required. Little is known about the characteristics of specialized medical care for people with ID. This study explores the characteristics of specialized medical care for people with ID, including the interplay between medical-, psychological-, and context-related problems. A retrospective cohort study using medical records of patients with ID who had visited the outpatient ID practice in Nijmegen, the Netherlands. Medical records (n = 128) were analyzed using descriptive statistics, focusing on (1) reasons for initial consultation, (2) health-related problems identified during initial consultation, and (3) disciplines involved following initial consultation. Analyses were performed separately for patients who were referred by a medical professional and patients who visited the practice for proactive health checks related to the etiological diagnosis. Patients often initially visit the outpatient ID practice for one type of complaint, most often psychological. Diverse, multiple, and interconnected problems were identified during specialized medical ID consultation. A range of specialist professionals (n = 25) were involved by the ID physician. The health-related problems of people with ID seen at the outpatient ID practice are diverse and interconnected, and originate from an interplay between medical-, psychological-, and context-related problems. This complexity is not mirrored in the reasons for referring to the outpatient ID practice. It is essential to go beyond medical views and assess health complaints in an integrated way, including the way ID can influence all levels (physical, mental, contextual) of the experienced health issue within the context of everyday life.

Stigma is a form of negative social stereotype characterized by a lack of respect toward an individual or a group of people. It is defined as a personal attribute that triggers negative stereotypes, leading to adverse effects on the individuals concerned. This study aims to explore the self-perceived stigma experienced by adolescents with intellectual disabilities in Chile. We explored self-perceived stigma in 139 Chilean adolescents, using the Perceived Stigma of Intellectual Disability Scale, which was translated and adapted for the Chilean population as part of this project. We calculated total stigma scores as well as scores for various subscales. Additionally, we conducted analyses of variance, independent t tests, and chi-square tests to identify differences in self-stigma based on various sociodemographic factors. The total self-perceived stigma score was relatively low among Chilean adolescents with intellectual disabilities compared to previously published reports from other countries. Some variations in reactions to discrimination were observed based on the type of schooling, particularly strong negative reactions associated with attending special schools. The low self-perceived stigma reported by Chilean adolescents with intellectual disabilities may be attributed to social and cultural factors, as well as the availability of social opportunities and their intensity. Future studies should further investigate the impact of special schools on individuals with intellectual disabilities in Chile.

Whilst there is a growing body of research about autistic girls, much less is known about the experience of mothering an autistic girl, and the potential impact of the diagnosis. This study qualitatively explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter's diagnosis. A thematic analysis was applied with themes examined through the lens of the CMM LUUUUTT model to further explore the stories lived and told by the mothers. Eighteen themes linked to perceived affordances, perceived constraints/constraints of perception, experienced affordances and experienced constraints. Participants highlighted the impact of autism myths and stereotypes which influenced identification, referral, diagnosis and ongoing support for the girls. Myths and stereotypes told about autism also played a significant role in the mothers lived experience of the diagnosis. An affordance of diagnosis was a new understanding about their daughters' needs, which led to new parenting styles, letting go of blame and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as relationally transformative, challenges were described in accessing emotional or educational support for their daughter's post-assessment.

To enhance social inclusion of people with (mild) intellectual disabilities, policy tends to focus on increasing their informal supportive networks. Family members, mostly parents, are often the main providers of informal support to people with mild intellectual disabilities. Previous research has shown the utility of social capital as a theoretical framework to examine support in the family relationships of people with mild intellectual disabilities, and has shown that several features of the family-based social capital of people with mild intellectual disabilities are dependent on support and living arrangements. However, existing research on support and living arrangements does not take the key features of family-based social capital (i.e., bonding and bridging social capital, reciprocity) into account. Therefore, the aim of the current study is to examine the family-based social capital of people with mild intellectual disabilities supported in 24-h residential settings (n = 29) versus outreach support settings (n = 45). All participants were individually interviewed about their family support relationships using the Family Network Method-Intellectual Disability (FNM-ID). Data were analyzed quantitatively using social network analyses and group comparisons. No significant differences between the two subgroups were found in the social network measures: the two subgroups did not differ in their experience of bonding and bridging social capital, nor in terms of the experienced reciprocity in their family relationships. However, a few differences in the composition of the family network were found. While people with mild intellectual disabilities in outreach support settings were more likely to include children in their significant family network and to provide support to parents, participants in 24-h care settings were more likely to report extended family as significant family network members.

The influence of context on the conceptualization, measurement, and application of the quality of life concept was acknowledged in the principles contained within the original Quality of Life Consensus Document published in 2002 and validated in 2004. Since that time, there has been a substantial increase in our understanding of both the QOL construct and the multidimensional properties of context. The purpose of this article is to report on a multi-step process conducted in 2019 by a group of international quality of life experts to review, critique, and update where necessary the QOL principles that were originally developed in 2002. Updated principles for conceptualization, measurement, and application are provided. An understanding of the role of context on the QOL concept allows for measurement guidelines to accompany the measurement principles, an understanding of the application conditions associated with a person- or family-centered approach to QOL, and implementing guidelines regarding both the development of QOL-related policies and practices and their monitoring and evaluation.

Taking care of persons with intellectual and multiple disabilities (IMD), especially when vulnerability and medical intervention increase, can lead to the question: to what extent is there still quality of life? In the search for answers, caretakers and families are confronted with unsolvable dilemmas such as how can we identify the meaning of this life or recognise when there is suffering? How does one understand and give meaning to quality of life where fragility is present? Society, on the other hand, which rates successful living as the standard, avoids the discussion on limits to quality of life by labelling it as a medical ethical issue. It has recently been argued that the medical perspective is leading in this discussion and is the deciding factor in giving meaning to quality of life. Such statements worry IMD healthcare professionals and caregivers. This article therefore aims to offer an insight into the professional, practical and personal care experience of both authors, to explore the issue in more depth and start a nuanced dialogue without losing sight of the immense complexity of the subject. To do this, we first outline the social context in which the healthcare practice has to take place, explaining the reality of it and the difficulties faced.