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Background: People with intellectual disabilities are less physically active and suffer from ill-health more than the general population. Support staff play an important role in the person's life. This study aimed to explore the support staff's experiences regarding the feasibility of adapted web-based exercise for people with intellectual disabilities. Method: Participants with intellectual disabilities living in community-based settings were recruited for a web-based exercise study. Eight semi-structured interviews were carried out with their support staff before and after the intervention period. Results: The main theme, 'Support staff are crucial for feasibility' encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities. Conclusion: The experiences of support staff, indicate that a web-based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial.

Most youths use Information and Communication Technology (ICT) for socialising, but there is a discussion about whether using ICT promotes social participation for youths with intellectual disabilities (IDs). Employing the concepts of social participation and self-determination together with the youths' perspectives, as conveyed by staff, we examine how social participation might be promoted for youths with intellectual disabilities in institutional settings in Sweden. The findings revealed three overarching themes. The first theme, "Developing skills, self-determination and becoming less reliant," illustrates the basic use of ICT. The second theme, "Sharing events, socialising and participating with others," draws attention to how youths take technology a step further to interact with others. The third theme, "Resources and attitudes," concerns the youths' need and desires for adequate support and equipment and the mindset of surrounding communities concerning ICT. Our conclusion is that ICT has the potential to promote social participation if the youths have access to personalised equipment and supportive staff.

The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were "Residential care," "Daily activities" and "Contact person." "Home help" and "Security alarm" increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65-79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.

Given the crucial role professionals play in maintaining the well-being of people with intellectual disabilities, their views on work satisfaction are relevant to analyse. A comparative analysis that takes into account the support provided in different welfare organisations can be of certain importance. The aim is to analyse the most common aspects of professional work satisfaction in work with people with intellectual disabilities in schools, healthcare, and social services, and to apply a comparative analysis of such experience taking into account respondents' organisational affiliations. Data were collected using a digital questionnaire. Given the aim of the study, we drew on one open-ended question: 'describe aspects of your work that are most satisfactory for you'. The analysis shows that respondents associated positive work experience with seven aspects: autonomy, competence, nature of the work, collaboration, trust and recognition, work environment, and service users. Findings indicate that discretion is an important facet of work satisfaction among respondents in all three organisations. Flexibility, autonomy in decision-making, the ability to plan and act within certain institutional and legal frameworks, and the ability to prioritise among daily work assignments are empirical examples of this.

The aim of the creation of this cohort was to investigate patterns of health and health care utilisation before and during the COVID-19 pandemic, overall and in relation to specific diagnoses, among people with intellectual disabilities (ID) compared to the general population. People living in Skåne, the southernmost region of Sweden, on 1st of January 2014 with at least one diagnosis of ID (ICD-10 codes F70-F79) or Down syndrome (DS; Q90), or support and/or services according to the LSS act comprised the ID cohort (n = 14 716). People living in the same family and/or household as a person in the ID cohort constituted the ID family cohort (n = 31 688), and those remaining comprised the general population cohort (gPop; n = 1 226 955). Data has been collected for all three cohorts from several national and regional registers. These include registers for health care (2014-2021), deaths (2014-2021), COVID-19-related health care (vaccinations, intensive care, palliative care, 2020-2021). The prevalence of ID was 1.2%. In the ID cohort, 77.9% had at least one measure of support, 5.8% at least one Q90-diagnosis and 63.8% had at least one F7-diagnosis (26.9% mild (F70), 7.4% moderate (F71), 2.8% severe (F72), 1.4% profound (F73), and 25.4% other/unknown (F78/F79)). Compared to the gPop there were more people in the younger age groups in the ID cohort. At this point, no additional collection of data will be carried out. However, there is a possibility to add data from the registers to include years after 2021 or from additional registers. Future publications will explore relevant research questions and report key findings in relation to health among people with ID. Future results will be used to inform policy and practice on people with ID., (© 2024. The Author(s).)

Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

This study sought to explore different understandings of participation in daily activity services among people with intellectual disabilities. Using a pedagogical sociocultural perspective, the research focused on individuals' perspectives and understandings as well as their account of social interaction, working and learning. In all, 17 people working in daily activity services were interviewed once, and, of these, 14 were interviewed a second time. Using qualitative content analysis, two themes and three categories were singled out. The results show that participation can be understood in two major ways: social interaction and performing work tasks.

Background: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. Method: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. Results: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. Conclusions: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed.

Organisations providing services for people with intellectual disabilities operate within a context of legal, moral, and institutional frameworks. This article uses an institutional framework to analyse two types of welfare organisations for people with intellectual disabilities in Sweden: inclusive education and disability arts. These two empirical cases show that because disability organisations operate at the intersection of different institutional spheres, their aims and activities are subjected to differing, and at times conflicting, expectations. Using an institutional framework helps to identify the influence of conflicting logics and external roles on the daily encounters that professionals have with people with intellectual disabilities. The findings raise ethical considerations about the moral status of people with intellectual disabilities in contemporary society. [ABSTRACT FROM AUTHOR]

This article reports on the results of a pilot study exploring whether and how the meal situations of persons with intellectual disabilities (PWIDs) in need of help and support during meal situations were affected by an eating aid. This article also analyzes how PWIDs and their assistants perceived their experiences of using an eating aid during meal situations. Data for the study were collected in interviews with PWIDs and their assistants. The results are presented in five themes: independence in the meal situation, motivation to use the eating aid, functions of the eating aid, social aspects of using the eating aid, and design corresponding to intellectual disability. The eating aid's function, user-friendliness, and the assistants' attitudes appear to be crucial for using the eating aid. Another important aspect is the introductory and training phase, which must be fundamentally adapted to suit the PWIDs ability to learn and understand. When these aspects are controlled, the eating aid can be a tool for increased independence during meal situations for PWIDs who are unable to move their arms or hands.

Background: People with disabilities are employed at lower rates than non-disabled individuals and, among people with disabilities, those with intellectual disabilities have most difficulty finding and keeping employment. The reasons for the low labour participation among people with intellectual disabilities are many. Sport participation has a number of positive effects for the individual, and it is reasonable to hypothesise that sport participation favours labour-force participation for individuals with intellectual disabilities., Objective: The dual aim of the current study was to investigate labour market participation among Swedish athletes with intellectual disabilities attending Special Olympics Invitational Games, and to investigate these athletes' experiences regarding the effect of sport participation on finding and keeping a job., Method: The study design includes two parallel data collections, a survey and an interview study. The survey was analysed using descriptive statistics and the interviews were analysed using content analysis., Results: The major result of the survey was the large number of individuals with intellectual disabilities who were in work: among men, 72% and, among women, 44%. This result was encouraging and differs from previous statistics on employment among Swedes with intellectual disabilities. The content analysis resulted in a first step in the categories manual work, individual sports and team sports, and in a second step, where the relation between sports and work was analysed, in two categories, namely indirect and direct relations between sport and work., Conclusion: To improve chances for individuals with intellectual disabilities to find and keep a job, sports participation should be encouraged.

Background: In the context of a health intervention among people with intellectual disabilities (ID), there was a need to assess satisfaction with some aspects of life, in order to monitor both potential positive and negative effects of the intervention. The aim of the present study was to develop and evaluate an easily administered scale for assessing satisfaction with home environment and leisure time among people with mild or moderate ID, living in community residences. Methods: A number of questions were constructed to measure satisfaction with home environment and leisure time. The questions were answered by 132 adults with mild or moderate ID, living in community residences in Sweden. The dimensionality of the scale was evaluated by factor analysis, and the reliability was estimated using Cronbach's alpha coefficients. Results: The analysis supported a four-factor solution with 12 items. The four factors were: (I) Satisfaction with housing environment; (II) Satisfaction with life; (III) Satisfaction with meals; and (IV) Satisfaction with recreational activity. The four factors explained almost 70% of the variance in the data set. Cronbach alpha coefficients for all scales were above 0.70, indicating that the reliabilities of the scales were satisfactory. Correlations between the four sub-scales ranged from 0.06 to 0.52, indicating low to moderate inter-correlations between the four sub-scales. Conclusion: The scale has fairly good psychometric properties and is easy to administer. The scale, which can be further improved, can be an important resource in health intervention studies. (Contains 2 tables.)

This study describes public special services, support, and health care provided to an administratively defined county sample of people with intellectual disabilities from early childhood to adult age. Comparisons were made on the variables year of birth, sex, and assessed level of intellectual disabilities in 1974. Information was obtained from case files and included the period from year of birth of the participants (between 1959 and 1974) to 2005. All participants were provided public special services, support, and health care either periodically or throughout the study period. Changes in legislation were reflected in the type of services, support, and health care provided to the target group. Type and amount of special services and support were related to year of birth. Only a few differences were related to sex and level of intellectual disabilities. These results indicate that public special services, support, and health care provided to people with intellectual disabilities reflect disability policy, legislation, and professional attitudes over different periods. It is suggested that measures were tailored to meet general needs considered to be shared by all people with intellectual disabilities rather than individual choices and wishes. The interaction among professionals emerged only to a limited extent. However, deficient information in the case files does not imply absence of contact between professional groups, but, if continuity in services, support, and health care is to be attained, significant improvement in documentation is required.

Background: As people with intellectual disabilities (ID) today live integrated in society and use different technological artefacts and services in their everyday life, more in-depth evaluation methods are crucial to detect strengths and limitations of their everyday technology use. The Everyday Technology Use Questionnaire (ETUQ) was originally designed to investigate the extent to which older adults with cognitive limitations can use the everyday technology that is of relevance to them. The purpose of this study was to explore and evaluate evidence of the validity of ETUQ among adult persons with ID. Methods: The original 93-item ETUQ was used to interview 120 adult participants with ID, recruited from a region in northern Sweden. A Rasch model was used to analyse the psychometric properties of the rating scale, scale validity, person response validity and person separation. Results: The ETUQ rating scale displayed sound psychometric properties when used with this sample. The goodness-of-fit statistics showed that 15 (16%) of the 93 items demonstrated higher values than expected. A step-by-step removal process of items not demonstrating fit to the model resulted in an ETUQ version with 46 items (49%) that met all the criteria for scale validity. Fifteen participants (12%), primarily with mild ID, still demonstrated a higher number of unexpected responses included in ETUQ. Conclusions: The results of this study indicate that the ETUQ generates a valid measure of perceived difficulty in using everyday technology including adult persons with ID.

This study evaluates a multifactorial school-based intervention with the aim of decreasing cardiometabolic risk factors by means of a healthy lifestyle, primarily with daily physical activity and healthy food during school hours, at an upper secondary school for students with intellectual disabilities. The outcome is measured in terms of cardiometabolic risk factors and cardiovascular fitness, both known to increase the risk of future cardiovascular disease, type 2 diabetes and cancer. Two years of intervention resulted in a positive trend in several measured cardiometabolic risk factors, with no increase in fat mass. Cardiovascular fitness levels were unchanged. We conclude that a healthy school environment can contribute to a deceleration of both fat mass gain and loss of cardiovascular fitness.

Explored are the relationships among personality and emotional reactions, work-related strain, and experiences of burnout among staff exposed vs. not exposed to violence when caring for people with intellectual disabilities (ID). Questionnaires measuring personality, emotional reactions, strain and burnout, and exposure to violence were distributed to staff (n = 112) working in 22 group homes for people with ID aged 18 years and older in a community in northern Sweden. The results did not show evidence of a direct influence of personality variables on exposure to violence when working with people with ID and no direct relationships were found between exposure to violence and the staff members' personality traits as measured with the Temperament and Character Inventory and Rosenberg's Self-Esteem Scale. Although the influence of personality traits on how the staff members experienced violence could not be clearly determined, the authors found an association between personality and strain and the risk of burnout in that certain staff exposed to violence felt more emotionally exhausted than did staff who were not exposed. The knowledge of the relationships among violence, personality, and risk of burnout may be important for the understanding which staff need special supports when working with people with ID.

Background: Dietary assessment is a challenge in general, and specifically in individuals with intellectual disabilities (ID). This study aimed to evaluate personal digital photography as a method of assessing different aspects of dietary quality in this target group. Method: Eighteen adults with ID were recruited from community residences and activity centres in Stockholm County. Participants were instructed to photograph all foods and beverages consumed during 1 day, while observed. Photographs were coded by two raters. Observations and photographs of meal frequency, intake occasions of four specific food and beverage items, meal quality and dietary diversity were compared. Evaluation of inter-rater reliability and validity of the method was performed by intra-class correlation analysis. Results: With reminders from staff, 85% of all observed eating or drinking occasions were photographed. The inter-rater reliability was excellent for all assessed variables (ICC greater than or equal to 0.88), except for meal quality where ICC was 0.66. The correlations between items assessed in photos and observations were strong to almost perfect with ICC values ranging from 0.71 to 0.92 and all were statistically significant. Conclusion: Personal digital photography appears to be a feasible, reliable and valid method for assessing dietary quality in people with mild to moderate ID, who have daily staff support.

Background: In the planning of services and health care for individuals with intellectual disability (ID), information is needed on the special requirements for habilitation and medical service and associated disabilities. Material and Methods: An unselected consecutive series of 82 adult persons with ID was studied. The medical examination consisted of the individual's health condition, associated impairments and disabilities. Medical and habilitation services and support were studied. Results: The results indicated that 71% of the persons in the series had severe and 29% mild ID. Forty-seven per cent of the persons with severe ID and 35% of those with mild ID had one or more additional central nervous system (CNS) disabilities. Of the persons with ID, 99% had access to a family doctor and 84% attended regular health visits. Notably, half of persons were referred to a specialist examination as a consequence of their present medical examination. Half of the persons with mental health problems were previously undiagnosed and only a few of these had access to a psychiatrist. Conclusion: Our study clearly demonstrates the magnitude and importance of neurological and psychiatric impairments in ID. The findings suggest a strong need for multidisciplinary health service.

Background: Community services for Swedish people with intellectual disability (ID) are intended to support self‐determination and integrity. Legislation does not allow the use of restrictive or coercive measures. Aim: The aim of this study is to identify the extent of, rationale for, and strategies staff believe would reduce the use of restrictive measures in group homes and daily activities services for people with ID. Method: A survey was sent to all staff in group homes and daily activities in one large Swedish municipality. The survey comprised four Likert style questions and one free text question, addressing the type of and reasons for restrictive measures, and how much staff value their replacement. A total of 250 surveys were completed. Results: A third of staff reported that some restrictive measures were used daily or weekly, primarily to protect and support service users. Adequate numbers of staff, better service design, and training were considered necessary for change. Conclusion: Staff report structural reasons, such as staffing, resources time, lack of training, and supervision for using restrictive measures. Staff see reducing the use of restrictive measures as requiring structural changes with engagement from the whole organization. [ABSTRACT FROM AUTHOR]

Although research on young people's identification processes on the Internet is a growing field, few studies illustrate conditions for young people with intellectual disabilities (ID). Previous studies have shown that young people with ID are worried about being marginalized, and that many in fact are lonelier than other young people. Internet and social networking sites might be of vital importance as a space for exploring alternative and less stigmatized identities. This article reports findings from individual interviews with 27 young people with ID in Sweden. The transcribed interviews were analyzed using a thematic content analysis. A prominent finding concerned the informants being well aware of both risks and opportunities using Internet and Social Networking Sites. Consequently, the more they interacted with non-disabled peers, the more they experienced negative consequences of Internet use. These circumstances rather lead to downsizing than upsizing Internet use, and less participation on Social Networking Sites. The experiences of the informants are discussed in a conceptual framework of social identity, participation, and emancipation. We recommend that social work practitioners reflect upon the ways that support can be arranged in order to empower young people with ID to participate on the Internet. [ABSTRACT FROM AUTHOR]

The Internet has become an increasingly common way for people to contact each other, to flirt, fall in love and start relationships. How does this development influence today's young people with intellectual disabilities? The article presents a picture of the Internet experiences of some young adults with intellectual disabilities and discusses how others view this usage. It is based on a qualitative study in Sweden where 10 young people with intellectual disabilities and 12 staff members were interviewed. The interviews show that young people with intellectual disabilities also use the Internet, mainly for social and romantic reasons. They view the Internet as a positive arena where they can be "like everybody else" and therefore generally present themselves without mentioning their disabilities. However, people around them tend to worry considerably and focus mainly on the risks involved in this usage of the Internet. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware that social inclusion for people with intellectual and development al disabilities (IDD) is a focus of welfare policies and legislation in many countries • To recognise that the implementation of policy and legislation for people with IDD is the shared responsibility of governments, and health, education and social care professionals • To identify shared learning among students in health, education and social care programmes as one means of achieving social inclusion for people with IDD Policies for people with disabilities, and specifically those with intellectual and developmental disabilities (IDD), have undergone significant changes during the past three decades. Many people with IDD experience social exclusion, which has significant implications for the individual, their family and wider society. Today the focus is on accessing universal services, care and support in the community to facilitate social inclusion. Professions and professionals in health, education and social services implement social inclusion policy in the field of IDD. However, there is a lack of coherence between the policy intentions of social inclusion and the realities of professional practice. Educational collaborations involving academics, students and practitioners from the professions working with people who have IDD provide an opportunity for shared learning. These collaborations support the development of knowledge and understanding, and the barriers that need to be addressed to achieve social inclusion for people with IDD. [ABSTRACT FROM AUTHOR]

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.

Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of professionals. Semi-structured interviews were conducted with seven professionals and were analysed with thematic analysis. The overarching theme ‘sense of security’ was identified as a prerequisite for health promotion, together with the sub-themes ‘resources in the organisation’, for example, respectful treatment of the residents, and `resources of the residents', for example, meaningfulness and social connectedness. Findings were discussed from the perspective of health assets which is defined as the factors contributing to maintain and sustain health. The importance of strengthening external assets, that is, resources in the society and the organisation, to promote internal assets, that is, residents’ individual resources, and ultimately their health, is emphasised. [ABSTRACT FROM PUBLISHER]

Higher education is an increasingly necessary achievement to attain employment. However, even in cases where a student has the academic skills to succeed, educational environments may not support students across all other domains necessary for education success, including social and communication needs. This is especially true for students with disabilities and autistic students, where the rate of completion of non-compulsory education is unknown. We used the Stockholm Youth Cohort (children aged 0–17 years from 2001 to 2011), a total population cohort (N = 736,180) including 3,918 autistic individuals, to investigate the association between autism without intellectual disability and completion of upper secondary education. We assessed the impact of sex and co-occurring Attention-Deficit/Hyperactivity Disorder (ADHD) on this association. By age 20 years (the expected age of completion), 68% of autistic students and 91% of non-autistic students admitted to upper secondary education had completed. In logistic regression models adjusted for student demographics, autistic students had almost five-fold higher odds of not completing secondary school (OR 4.90, 95% CI 4.56 5.26) compared to their non-autistic peers. Autistic students with ADHD had particularly high odds of non-completion of upper secondary school. Autistic students without intellectual disability attending mainstream education are substantially less likely to complete upper secondary education as compared to their peers. These findings have implications for the appraisal of how inclusive school policies serve autistic students’ academic and social needs, ultimately addressing population health and independent living. [ABSTRACT FROM AUTHOR]

The aim of this study is to explore the IPS implementation process in a first‐episode psychosis (FEP) mental health service team in Sweden. More specifically, the study explores how integration processes and critical situations are perceived over time by team members who originated from two diverse welfare organizations. A serial interview design was used (initially, at 6 and 12 months) to describe experiences of 16 team members. Material was analyzed using a constant comparison grounded theory approach. Team members dealt with the ambivalence of sharing mental health information, and whether the new way of working was a risk or benefit for users. They gradually learned new perspectives and knowledge, built trust and shared common views. After a year, the team workload perceived reduced and became person‐centred. Some members described remaining unclear roles and requested further support. Negotiated goals for integration and early knowledge transfer are critical. Organizational change and trusting team relationships have to be facilitated. Anticipated gains of integration should be clearly described and discussed early on, and continuous support for sustainability should be considered. This study confirmed the importance and potential of integrating IPS into FEP teams. [ABSTRACT FROM AUTHOR]

It is mandatory for staff in Swedish community services for people with intellectual disabilities to report incidents of error or malpractice. The aim is to study if incident reports contribute to developing quality in services for people with intellectual disabilities who present with challenging behaviours. 159 reports on incidents from group homes and daily activities services were accessed and analysed using narrative thematic analysis. Most reports concerned altercations between service users. Analysis focused mainly on the immediate incident and attributes of service users. Amendments were not (obviously) aligned with causes, and neither sufficiently addressed structural shortcomings. Restrictive measures were described, but changes in practices were not mentioned. Reports including Self-injurious behaviour (SIB) were conspicuously absent. Reports are handled in a seemingly perfunctory manner, without any development. Quality development relying on staff reports and front-line managers' investigations requires support based on values rather than on the legal framework. [ABSTRACT FROM AUTHOR]

Background: Few studies have focused on how youth with intellectual disability (ID) can be facilitated in reasoning about future parenthood. This study aimed to explore an intervention using the Toolkit "Childrenwhat does it involve?" and the Real‐Care‐Baby (RCB) simulator among students with ID. Method: Sixteen students with ID who participated in an intervention with 13 educational sessions, with adapted knowledge and a three‐day caring session with the RCB simulator, were individually interviewed after the intervention. Qualitative content analysis was used. Results: Participants reported that the intervention provided important thoughts and insights on future parenting, providing a basis for informed decisions. The ability to be responsible and have autonomy in life and in caring for a future child were described as important. Conclusion: After an intervention, with structured and adapted knowledge and experiences of the RCB simulator, students with ID reported an understanding of the importance of informed decisions about future parenthood. [ABSTRACT FROM AUTHOR]

Background: Participation comprises attendance and involvement in everyday situations. Picture My Participation (PmP) is an instrument intended to measure participation in children with disabilities, particularly in low and middle income countries. Aim: To investigate content validity and usefulness of PmP for measuring participation in children with intellectual disability (ID) in South Africa and Sweden. Methods: A picture supported interview with 149 children, 6–18 years, with and without ID. Twenty everyday activities were provided. The three most important activities were selected by the child. Attendance was rated on all activities. Involvement was rated on the most important. Results: All activities were selected as important by at least one child with ID in both countries. There were similarities in perceived importance between the children with and without ID from South Africa. The children from South Africa with ID were the only subgroup that used all scale points for rating attendance and involvement. Conclusion: The 20 selected activities of PmP were especially relevant for children with ID in South Africa. The usefulness of the scales was higher for the children with ID in both countries. PmP is promising for assessing participation across different settings but psychometrical properties and clinical utility need further exploration. [ABSTRACT FROM AUTHOR]

There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers' experience is described through their efforts to 'accept the challenge to coach special-needs students into adulthood'. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students' shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students' particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health. [ABSTRACT FROM AUTHOR]

Background: Parents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The COVID‐19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents' caregiving. The present study aimed to fill this gap. Method: Semi‐structured interviews with 10 Swedish parents with intellectual disability were analysed using thematic analysis. Results: One broad caregiving‐related theme: increased caregiving demands and reduced resources for coping resulting in strained parent–child interactions and relationships. Four subthemes highlighted influential factors: pandemic information, professional support, social relationships and informal support, and children's school activities. Strained parent–child interactions were particularly common in the absence of adapted pandemic information, if professional and informal support were compromised, and if the parents had dealt with school‐related changes. Conclusions: Findings support contextual models of caregiving and a stress‐resources perspective, and emphasise the importance of adapted information and support to parents with intellectual disability during crises. [ABSTRACT FROM AUTHOR]

The aim of this article is to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. The article is based on a study with a phenomenological approach, grounded on the concept of life-world. Individual, qualitative interviews were conducted with 12 people with ID (five men, seven women), between the ages of 48 and 71 (mean=64), who lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and sub-themes. The findings of the study reveal the informants' lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes, ‘age as a process of change’ and ‘existential aspects of ageing’, each with three sub-themes. The body is an essential element in their experience of ageing and growing old, and in how this experience is expressed. The study also found social, cultural and historical dimensions of the life-world to be important in the informants' experience of ageing and later life. This supports understanding of the existence of a collective life-world for older people with ID, the unique experiences the informants share because of their disability and its consequences for their lifecourse. [ABSTRACT FROM PUBLISHER]

Summary: It is reported that parents with intellectual disability are generally more likely to have depleted social networks and a lack of meaningful friendships. The aim of this study is to explore parents' descriptions of the relationships in their networks and their reflections on support and what makes the relationships in their networks a valuable resource in their parenting. Semi-structured interviews were conducted with 15 mothers and 6 fathers. The data were analysed using content analysis and theoretical perspectives of social relations and social capital. Findings: Three different network types were identified, including formal, informal, and formal/informal relations. Different types of support were identified as well as bonding, bridging and linking social capital, and strong and weak ties. A diversity of support and strong ties together with trustful relations seem to be the most important factors in building social capital for parents. Applications: The study increases recognition of how parents reflect on their networks and what supports their social capital. The findings highlight the importance of professional awareness of the existence of social capital and how this is reflected among parents and can be used to improve social work practice. [ABSTRACT FROM AUTHOR]

The overarching aim of this study is to explore guardianship in terms of its impact on daily lives of adults with intellectual disabilities in Sweden. Based on qualitative interviews, the article focuses on the expected and actual role of limited guardians for people with intellectual disabilities in the context of Swedish laws. Our findings show that the legal definition of limited guardianship is unclear and that this lack of clarity, among other dilemmas, creates conflict among clients, guardians, relatives, professionals and care workers. The guardian may be expected to act as an accountant, a legal advocate, or even a surrogate family member. The result is consistent with previous research in other countries on the consequences of guardianship. The current legislation on limited guardianship is in need of amendment in order to avoid legal uncertainty and ambiguity among clients and their support network. [ABSTRACT FROM AUTHOR]

Patients with intellectual and developmental disability (IDD) are often misinterpreted and misunderstood. Studies show that, in general, healthcare professionals have limited knowledge about IDD, and registered nurses (RNs) often report feeling unprepared to support this group of patients. Therefore, more knowledge about how to adequately address care for this patient group is warranted. This qualitative study employs an interpretative descriptive design to explore and describe Swedish RNs' perceptions of caring for patients with IDD, here in a home‐care setting. Twenty RNs were interviewed between September 2018 and May 2019, and the resulting data were analysed through an inductive qualitative content analysis. The study adheres to consolidated criteria for reporting qualitative research (COREQ). Our analysis found that nurses' perceptions of caring for patients with an IDD could be understood from three overarching categories: nursing held hostage in the context of care, care dependent on intuition and proven experience and contending for the patients' right to adequate care. Our findings show that the home‐care context and organisation were not adjusted to the needs of the patients. This resulted in RNs feeling unable to provide care in accordance with their professional values. They also explained that they had not mastered the available augmentative and alternative communication tools, instead using support staff as interpreters for their patients. Finally, on a daily basis, the RNs caring for this group of patients took an active stance and fought for the patients' right to receive the right care at the right time by the right person. This was particularly the case with issues involving psychiatric care. [ABSTRACT FROM AUTHOR]

This article examines the value of using Crip Theory by investigating what is considered normal sex life for people with intellectual disabilities in Sweden. By combining Crip Theory with Gagnon and Simon’s sexual scripting theory, it concludes that Crip Theory can be of use for researchers and activists, and also suitable for educating staff members, in that it questions sexual norms that are most often taken for granted. However, due to the fact that research or activism inspired by Crip Theory seldom includes intellectual disabilities, its usefulness is limited, and more work is needed to solve problems surrounding agency, stigma and visibility. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (ID) often exhibit physical and communicative difficulties as well as challenging behaviors. Physical restraints are one method used to manage challenging behaviors and promote physical safety for people with ID, their fellow residents, and professional carers. However, there is a lack of data regarding the practice of employing physical restraints in Swedish group homes for people with ID. The aim was to investigate the prevalence of physical restraint use in group homes for people with ID, and to identify the characteristics of individuals subjected to these restraints. The study had a cross-sectional design and included 556 people with ID, aged 16-90 years, living in 118 group homes. Physical restraint use and residents' characteristics were surveyed with a questionnaire. Of the 556 residents studied, 99 (17.8%) had been subjected to physical restraint over the previous week. Of these, 99.2% were subjected to more than one type of restraint. The most commonly used type of physical restraint was a belt (73.7%). Using logistic regression analysis, the independent risk factors strongly associated with being physically restrained were inability to walk independently, impaired speech, screaming and shouting continuously, epileptic seizures, and spasticity. Despite the absence of legal authority for physical restraint use in group homes for people with ID, physical restraints are frequently used in Sweden. Both physical impairments and behavioral symptoms are significantly associated with physical restraint use. [ABSTRACT FROM AUTHOR]

Background: People with profound intellectual and multiple disabilities (PIMD) have combined severe intellectual and physical disability and need extensive health care support. They cannot communicate by spoken language and need around the clock support. The health care for people with PIMD is typically provided by a number of different health care services in collaboration with residential care staff and their managers. The quality of health care for people with PIMD are important due to their limited ability to communicate their needs. The aim of this study was to explore residential care staff and manager's experiences and views of health care services for adults with PIMD.Methods: Thirteen semi-structured interviews with residential care staff (n = 7) and managers (n = 6) were conducted and analysed using qualitative content analysis.Results: The informants expressed a variety of experiences, under the theme was Quality of health care is enhanced through residential care staff. The theme was comprised of four subthemes: (1) Individually tailored support promotes quality, (2) Accessibility requires adaptation and prioritization by healthcare providers, (3) Disability competence promotes quality and safety and (4) Complex collaboration conditions between the person with PIMD, residential care staff and disability health care.Conclusions: The residential care staff create quality of care in their role as representatives for adults with PIMD. The care situation is complex and requires adequate competence in the disability, the individual's needs and adaptations to ensure quality of health care. It is also important to build collaboration with other services that are involved in the care of people with PIMD. [ABSTRACT FROM AUTHOR]

Background: Intellectual disability (ID) aggregates in families, but factors affecting individual risk and heritability estimates remain unknown. Methods: A population‐based family cohort study of 4,165,785 individuals born 1973–2013 in Sweden, including 37,787 ID individuals and their relatives. The relative risks (RR) of ID with 95% confidence intervals (95% CI) were obtained from stratified Cox proportional‐hazards models. Relatives of ID individuals were compared to relatives of unaffected individuals. Structural equation modeling was used to estimate heritability. Results: Relatives of ID individuals were at increased risk of ID compared to individuals with unaffected relatives. The RR of ID among relatives increased proportionally to the degree of genetic relatedness with ID probands; 256.70(95% CI 161.30–408.53) for monozygotic twins, 16.47(13.32–20.38) for parents, 14.88(12.19–18.16) for children, 7.04(4.67–10.61) for dizygotic twins, 8.38(7.97–8.83) for full siblings, 4.56(4.02–5.16) for maternal, 2.90(2.49–3.37) for paternal half‐siblings, 3.03(2.61–3.50) for nephews/nieces, 2.84(2.45–3.29) for uncles/aunts, and 2.04(1.91–2.20) for cousins. Lower RRs were observed for siblings of probands with chromosomal abnormalities (RR 5.53, 4.74–6.46) and more severe ID (mild RR 9.15, 8.55–9.78, moderate RR 8.13, 7.28–9.08, severe RR 6.80, 5.74–8.07, and profound RR 5.88, 4.52–7.65). Male sex of relative and maternal line of relationship with proband was related to higher risk (RR 1.33, 1.25–1.41 for brothers vs. sisters and RR 1.49, 1.34–1.68 for maternal vs. paternal half‐siblings). ID was substantially heritable with 0.95(95% CI 0.93–0.98) of the variance in liability attributed to genetic influences. Conclusions: The risk estimates will benefit researchers, clinicians, families in understanding the risk of ID in the family and the whole population. The higher risk of ID related to male sex and maternal linage will be of value for planning and interpreting etiological studies in ID. [ABSTRACT FROM AUTHOR]

We investigated the relationships between syndromic manifestations of defective placentation and the incidence of intellectual disability (ID) in offspring by conducting a population-based cohort study of 1,581,200 nonmalformed, live singleton infants born in Sweden between 1998 and 2014. Exposures were: 1) placental abruption, 2) preterm preeclampsia (<34 weeks of gestation), 3) preeclampsia combined with infant being small for gestational age (SGA) at birth, and 4) spontaneous preterm birth. The outcome was an ID diagnosis after 3 years of age. We estimated hazard ratios (HRs) and 95% confidence intervals (CIs) for each syndrome using Cox regression and robust variances. There were 9,451 children with ID (5.5 per 10,000 child-years). ID incidence rates increased with placental abruption (HR = 2.8, 95% CI: 2.3, 3.5), preterm preeclampsia (HR = 3.7, 95% CI: 2.9, 4.7), preeclampsia combined with SGA (HR = 3.3, 95% CI: 2.6, 4.1), and spontaneous preterm birth (for 32–36 and 22–31 weeks, respectively, HR = 1.6 (95% CI: 1.4, 1.8) and 5.2 (95% CI: 4.3, 6.2)). The same pattern of results was evident in sibling-controlled analyses among 1,043,158 full siblings. The strength of associations increased with ID severity. Preterm birth only partly explained the associations of placental abruption, preeclampsia, or SGA with ID. We conclude that defective placentation is related to increased incidence of ID in the offspring. [ABSTRACT FROM AUTHOR]

The ICF provides a common scientific language for the study of health and functioning. Adolescent mental health, operationalized as engagement in life situations, is one aspect of functioning. Engagement as mental health has a bi-directional relation with environmental factors. To test the statistical utility of the International Classification of Functioning (ICF) classification in coding adolescent mental health and mental health problems. Using data measuring mental health in a representative Swedish sample of 12–13-year-olds linking responses to the classification codes. The internal structure of the classification system constructs was tested using factor analysis. A factorial solution could be found for most chapters indicating that the ICF framework and coding system could be used; however, the variance explained was quite low. Linking worked better at code-level, rather than chapter level. Items measuring risk behavior or risk factors are loaded in separate constructs. When coding items for statistical purposes, code-level rather than chapter level is to be preferred. Also, participation in risk behavior loads in separate factors indicating that these behaviors are separate from other types of participation. Considering some challenges with varying level of detail in the ICF-CY's chapters, the framework can be used to identify the content of mental health questionnaires to be used in rehabilitation. To provide more detailed information in rehabilitation addressing mental health, a code-level solution is more appropriate than a chapter level solution. Despite the use of same ICF-CY codes, negative participation, i.e., risk behavior, measures a different dimension than positive participation, is especially relevant in rehabilitation addressing mental health. [ABSTRACT FROM AUTHOR]

Background: Meta‐analyses suggest an association between autism spectrum disorder (ASD) and obesity, but the factors underlying this association remain unclear. This study investigated the association between ASD and obesity stratified on intellectual disability (ID). In addition, in order to gain insight into possible shared etiological factors, the potential role of shared familial liability was examined. Method: We studied a cohort of 3,141,696 individuals by linking several Swedish nationwide registers. We identified 35,461 individuals with ASD and 61,784 individuals with obesity. Logistic regression models were used to estimate the association between ASD and obesity separately by ID and sex and by adjusting for parental education, psychiatric comorbidity, and psychotropic medication. Potential shared familial etiologic factors were examined by comparing the risk of obesity in full siblings, maternal and paternal half‐siblings, and full‐ and half‐cousins of individuals with ASD to the risk of obesity in relatives of individuals without ASD. Results: Individuals with ASD + ID (OR = 3.76 [95% CI, 3.38–4.19]) and ASD−ID (OR = 3.40 [95% CI, 3.23–3.58]) had an increased risk for obesity compared with individuals without ASD. The associations remained statistically significant when adjusting for parental education, psychiatric comorbidity, and medication. Sex‐stratified analyses indicated a higher relative risk for males compared with females, with statistically significant interaction effects for ASD−ID, but not for ASD+ID in the fully adjusted model. First‐degree relatives of individuals with ASD+ID and ASD−ID had an increased risk of obesity compared with first‐degree relatives of individuals without ASD. The obesity risk was similar in second‐degree relatives of individuals with ASD+ID but was lower for and ASD−ID. Full cousins of individuals with ASD+ID had a higher risk compared with half‐cousins of individuals with ASD+ID). A similar difference in the obesity risk between full cousins and half‐cousins was observed for ASD−ID. Conclusions: Individuals with ASD and their relatives are at increased risk for obesity. The risk might be somewhat higher for males than females. This warrants further studies examining potential common pleiotropic genetic factors and shared family‐wide environmental factors for ASD and obesity. Such research might aid in identifying specific risks and underlying mechanisms in common between ASD and obesity. [ABSTRACT FROM AUTHOR]

Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life. Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16‐year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups. Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, finances, recreational and cultural activities, family and social relations, society participation, and personal safety. Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identified within the study group. Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community‐based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time. [ABSTRACT FROM AUTHOR]

This study compared accelerometer-assessed habitual physical activity (PA), sedentary time, and meeting PA recommendations among 102 youth with disabilities (7-20 years) in four subgroups--physical/visual impairments, intellectual disability, autismspectrumdisorders, and hearing impairment--and 800 youthwith typical development (8-16 years). Low proportions of youth with disabilities met PA recommendations, and they generally were less physically active and more sedentary than youth with typical development. The hearing impairment and autism spectrum disorder groups were the most and least physically active, respectively. Older age and to some extent female sex were related to less PA and more sedentary time. Considering the suboptimal levels of PA in youth with disabilities, effective interventions directed at factors associated with PA among them are needed. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities are often regarded as subjects of care and support, rather than citizens with the same rights as others. This article aims to describe how young adults experience and perceive attitudes, treatment and participation in terms of the application process for daily activity/sheltered employment, as well as their transition into this activity and their first years' experience of it. The study was carried out in a middle-sized municipality in Sweden. Data were collected from 14 people with mild to moderate intellectual disabilities, aged between 21 and 23 years. The interviews were supported by the use of pictograms. Qualitative content analysis was used to analyse the data. The participants stated that they wished to be listened to as adults, and to participate in decisions about daily activity/sheltered employment. They wished to be treated and accepted as individuals, not according to their disabilities. They wanted to participate, and the opportunity to do so would require an accepting environment. [ABSTRACT FROM AUTHOR]

Background Knowledge about diagnoses patterns in older people with intellectual disabilities is limited. Methods The case group ( n = 7936) comprised people with intellectual disabilities aged 55 years and older. The control group ( n = 7936) was age matched and sex matched. Somatic inpatient diagnoses (2002-2012) were collected retrospectively. Results Several diagnoses were in several years significantly more common in the case group, particularly infections [odds ratio ( OR) 1.78-4.08]; nervous system ( OR 2.06-31.75); respiratory ( OR 1.78-4.08) and genitourinary diseases (1.59-11.50); injuries, unspecified symptoms ( OR 1.56-4.27); and external causes of morbidity ( OR 1.53-4.08). The oldest in the case group had significantly less occurrence of tumours ( OR 0.26-0.51), cardiovascular ( OR 0.42-0.72), and musculoskeletal diseases ( OR 0.32-0.53) than controls. Conclusions Older people with intellectual disabilities have higher numbers of some diagnoses, but lower numbers of others. Further research on the reasons for the unique pattern of diagnoses in this group is required. [ABSTRACT FROM AUTHOR]

This article compares the welfare services for adults with an intellectual disability in three European countries: England, Norway and Sweden. The purpose of the comparison is to develop an understanding of the welfare state and institutional contexts of the country-specific policies and to develop a critical analysis through a comparative method based on selected secondary literature. Typological frameworks of European welfare states are applied as analytic frameworks to enable comparison between the countries. It is argued that there are international policy developments but these are shaped at a national level by different types of welfare states and histories. Through a comparison of similarities and differences, the article suggests that international policy ideas that impact on the lives of people with intellectual disabilities are mediated by different types of welfare states and institutions. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) are known to have more diseases and are believed to start aging earlier than the general population. The population of older people with ID is growing, but knowledge about their use of healthcare is limited. This study aimed to explore somatic healthcare utilisation patterns among people with ID living in Sweden, in comparison with the general population from 2002 to 2012. Methods: Participants were a group of people with ID (n = 7936) aged 55 years and older in 2012, and an equal-sized, birth year and sex matched, general population sample (n = 7936). Participants were divided into age groups of 5-year intervals. Data regarding in- and outpatient care were collected from the Swedish National Patient Register. Results: In the younger age groups, the ID group had higher healthcare utilisation compared with the general population sample, with higher risks for planned and unplanned somatic in- and outpatient care, particularly for unplanned inpatient registrations. Decreasing patterns were seen with age; with lower risks in the ID group for the oldest age groups. This was most evident in planned somatic in- and outpatient care. In those with at least one registration, the ID group had a longer unplanned length of stay in the younger age groups, but fewer planned visits to physicians in somatic outpatient care compared with the control group. Conclusions: Compared with the general population, people with ID show higher healthcare utilisation in younger age groups. Healthcare utilisation decreases with age, and in old age, fewer people with ID use healthcare compared with the general population. The barriers to accessing planned healthcare for older people with ID need more investigation. [ABSTRACT FROM AUTHOR]

In Sweden sex education has been compulsory since 1955. However, access to sex education seems to be insufficient in schools with special education programs. Concerns about unwanted pregnancies, sexual abuse and sexual risk situations make personnel insecure about how to best deal with the subject. A largely heteronormative perspective of sex education renders young gay people with ID an invisible group. Stereotyped gender norms where girls are supposed to be oriented towards love and relationships and boys towards sexuality make it more difficult for young people with ID to find a more subtle way to act. The aim of this study is to strengthen sexual health among young people with ID, and to develop a knowledge base culled from their own experiences that can help teachers in special schools to supply sufficient sex education. What are the experiences of sex education in young people with ID aged 16-21? In what way, and by whom, should sex education be supplied? What themes do the young people with ID consider important? Qualitative research interviews with 16 young females (9) and males (7) with ID aged 16-21 years have been conducted. Guiding the analyses is an interactionist perspective on sexuality. Results show that a restrictive script is geared toward informants with ID, focusing on sexual risks instead of challenging a discourse of pleasure, desire and intimacy. The study also shows that using critical pedagogy can help personnel develop a professional and adequate teaching model for sex education at schools for adolescents with ID. [ABSTRACT FROM AUTHOR]

The aim of this article is to describe the relationship between activities, social network and the possibility of influencing daily lives for about 24 people with intellectual disabilities. The study is based on data collected through interviews with staff at day centres and in group homes and with one relative. The results indicated that several of the people with intellectual disabilities had little or no opportunity to exert influence on choice of activities or social contacts. The study also suggests that if the environment makes it possible for people with intellectual disabilities to make choices, learn social competence and technical know-how and to communicate, it will support the opportunity for choosing activities, participating and influencing. Increased possibilities for communication are one way of changing the balance of power. An important factor for the participants was relatives and contact people, those participants who have these had more variation in their activities and in more different environments. The study shows that it is important to offer different experiences to people with intellectual disabilities in order that they learn to take initiatives and try new things.