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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. [ABSTRACT FROM AUTHOR]

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]

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]

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. [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 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. [ABSTRACT FROM AUTHOR]

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]

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 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [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 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 ≥ 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. [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]

Objectives: The study aimed to investigate the association between maternal body mass index (BMI) in early pregnancy and children's intellectual disability (ID) risk in the absence of chromosomal disorders, neurofibromatosis and tuberous sclerosis, taking adverse birth outcomes, maternal hypertension/diabetes and maternal socioeconomic status into consideration.Methods: We conducted a cohort study of singletons without common genetic defects born in Sweden during 1992-2006, and followed them from birth until 31 December 2014 (n=1 186 836). Cox proportional hazards models were used to analyse the association between maternal BMI in early pregnancy and the risk of offspring's ID.Results: The risk of ID was higher in children born to mothers who were underweight (HR=1.21, 95% CI=1.07 to 1.36), overweight (HR=1.28, 95% CI=1.21 to 1.34) or had obesity class I (HR=1.63, 95% CI=1.53 to 1.74), obesity class II (HR=2.08, 95% CI=1.88 to 2.30) and obesity class III (HR=2.31, 95% CI=1.46 to 3.65) than in children born to normal weight mothers. Results remained consistent after excluding children with adverse birth outcome or born to mothers with gestational hypertension/diabetes. Analysis stratified by maternal education and annual household income showed that the association between maternal underweight and children's ID risk was attenuated among children of mothers with tertiary education or with high income.Conclusions: Our findings suggest that maternal underweight or overweight/obesity in early pregnancy was associated with the development of ID in their offspring. This association was independent of the effect of adverse birth outcomes and maternal hypertension/diabetes. High socioeconomic status may attenuate the risk of ID among children of underweight mothers. This study highlights the importance of improving health education before conception to reduce children's ID risk. [ABSTRACT FROM AUTHOR]

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier's ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier's ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members' attitudes toward the adults' capability can also be a barrier to participation. Applying Shier's ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D. [ABSTRACT FROM AUTHOR]

This article presents findings from a pioneer study addressing the first co-action between students with intellectual disabilities and an Academy of Music in Sweden. The aim of the article is to study and discuss subject positions that are constructed in rhythmic lessons related to a gathering where students with intellectual disabilities interact with a group of Master of Education in Music students at an Academy of Music, and also to describe how constructions of identity are manifested in the interaction between the actors. With poststructuralist and social constructionist theories as theoretical framework, video observations were conducted to enable an overarching view of the pedagogic practice. The findings reveal that the gathering between the groups becomes an expression of inclusion functioning as exclusion, since the teacher’s position the students with intellectual disabilities in ways that obstruct equal interaction with the other student group. Finally, implications of the findings are discussed in addition to inclusion as an ideal model in educational settings. [ABSTRACT FROM PUBLISHER]

This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professionalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four professionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cultural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about honour-related experiences, is especially important because of these young people's vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as 'culture bridges' for professionals who lack strategies, methods and materials. Increasing professionals' prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context. [ABSTRACT FROM AUTHOR]

Aim: To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown. [ABSTRACT FROM AUTHOR]

•Summary: This article explores a relatively uncharted research area. The focus of the analysis is on how professionals working in care provision units, specialized prostitution units, the police, social services and special schools detect and deal with prostitution among people with intellectual disabilities. The data were obtained primarily through focus group interviews. The study shows that organizational specialization in different authorities and services makes it difficult to identify and work with this group. Clients with complex problems tend to find themselves in between the jurisdictional fields of different authorities, meaning that many do not receive the support that they need.• Findings: In recent decades social work has undergone increasing balkanization and specialization. Each particular organization is regulated by specific legislation, regulations, forms of knowledge and normative assumptions. Professionals working with people with intellectual disabilities have difficulties in detecting prostitution among their clients, whilst those who work with prostitution lack the knowledge and methods to work with intellectual disabilities. At the same time, social work with these individuals is conducted within a field of tension between the client′s right of self-determination and professionals’ responsibilities for their well-being.• Applications: The study demonstrates that, with this type of complex problem, it is important to establish different types of collaboration between different organizations. However, due to the risk of increased control being detrimental to clients, collaboration needs to be founded on the client’s needs and right to self-determination. [ABSTRACT FROM PUBLISHER]

Background: Maternal diabetes has been associated with a risk of neurodevelopmental disorders (NDDs) in offspring, though the common co-occurrence of autism spectrum disorders (ASD), attention-deficit/hyperactivity disorder (ADHD) and intellectual disability (ID) is rarely considered, nor is the potential for confounding by shared familial factors (e.g. genetics).Methods: This population-based cohort study used data from Psychiatry Sweden, a linkage of Swedish national registers, to follow 2 369 680 individuals born from 1987 to 2010. We used population-averaged logit models to examine the association between exposure to maternal type 1 diabetes mellitus (T1DM), pre-gestational type 2 diabetes mellitus (T2DM) or gestational diabetes mellitus (GDM), and odds of NDDs in offspring. Subgroup analysis was then performed to investigate the timings of GDM diagnosis during pregnancy and its effect on the odds of NDDs in offspring. We compared these results to models considering paternal lifetime T1DM and T2DM as exposures.Results: Overall, 45 678 individuals (1.93%) were diagnosed with ASD, 20 823 (0.88%) with ID and 102 018 (4.31%) with ADHD. All types of maternal diabetes were associated with odds of NDDs, with T2DM most strongly associated with any diagnosis of ASD (odds ratioadjusted 1.37, 95% confidence interval 1.03-1.84), ID (2.09, 1.53-2.87) and ADHD (1.43, 1.16-1.77). Considering common co-morbid groups, the associations were strongest between maternal diabetes and diagnostic combinations that included ID. Paternal T1DM and T2DM diagnoses were also associated with offspring NDDs, but these associations were weaker than those with maternal diabetes. Diagnosis of GDM between 27 and 30 weeks of gestation was generally associated with the greatest risk of NDDs in offspring, with the strongest associations for outcomes that included ID.Conclusion: The association of maternal diabetes with NDDs in offspring varies depending on the co-morbid presentation of the NDDs, with the greatest odds associated with outcomes that included ID. Results of paternal-comparison studies suggest that the above associations are likely to be partly confounded by shared familial factors, such as genetic liability. [ABSTRACT FROM AUTHOR]

In Sweden, citizenship and participation in society have been emphasized as important for persons with intellectual disabilities for over four decades. The aim of the study was to describe, from a longitudinal perspective, how persons with intellectual disabilities experience citizenship and voting. The characteristics of becoming and being a voter were also identified. Thirteen women and seven men, aged 22-55 years on the first interview occasion in 1998, were interviewed three times more in regard to general elections in Sweden during the period 1998-2006. A constant comparative method was used in the data analysis. Two-thirds of the participants voted in at least one of the three elections and a group of seven people did not vote at all. Age and significant persons were the most crucial factors for voting. The characteristics of a voter were having the idea and belief that one should vote as a citizen and having experience of voting so that one knew how to do it. In both these cases, significant persons and age were of importance. The authors suggest that the development of Swedish social policy may have influenced the voting behavior as people born during the 1940s and 1950s voted more often than people born during the 1960s and 1970s. Additionally, their social networks may enable persons with intellectual disabilities to make full use of their right to exercise political citizenship and to vote. [ABSTRACT FROM AUTHOR]

Background The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. Methods Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). Results In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender-related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender-related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. Conclusions Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender-neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID. [ABSTRACT FROM AUTHOR]

Background: Restrictive measures (RM) are prevalent in services for people with intellectual disabilities. This study investigates managerial awareness of RM and the nature of organisational supports required to reduce their use. Method: A survey asked front‐line managers and staff what (RM) were used, their purpose, impact and importance (10‐item Likert scales) and what organisational changes were required (free text). Responses were analysed using descriptive methods and content analysis. Results: Managers reported a lower use of RM, compared with staff. According to managers, RM were mainly used to keep service users from harm, their use having a significant impact. Opportunities to change practices were limited by a lack of resources and organisational support. Conclusion: Front‐line managers seem to lack the capacity to address the use of RM due to organisational drift; limited manager time and opportunity to allocate resources; inadequate environments; and lack of skilled staff, knowledge and relevant professional input. [ABSTRACT FROM AUTHOR]

Background: Preterm birth has been linked to increased risk of autism spectrum disorders (ASD), but how this risk changes with gestational age at birth has not been well characterised, especially with regard to co-occurring intellectual disability (ID).Methods: Register-based cohort study of singleton births in 1984-2007 in Stockholm County, Sweden (N total: 480 728; n ASD: 10 025). We assessed overall and sex-specific, gestational week-specific prevalence estimates and risk ratios of ASD with and without ID.Results: Preterm and postterm births were associated with elevated risk of ASD, and the relationship between gestational age at birth and ASD with and without ID differed in males and females. Risk of ASD without ID was higher in preterm births among both sexes and decreased continuously with increasing length of gestation. Risk of ASD with ID was higher in both preterm and postterm births among both sexes, with postterm birth in females being more highly associated with ASD with ID than that in males.Conclusions: The relationship between gestational age at birth and ASD differs by the presence/absence of co-occurring ID and fetal sex. Both preterm and postterm birth are associated with increased risk of ASD. Risk of ASD is not constant within conventionally defined gestational age at birth periods. Further research on mechanism underlying these associations is needed. [ABSTRACT FROM AUTHOR]

Importance: Maternal antidepressant medication use during pregnancy has previously been associated with adverse outcomes in offspring, but to our knowledge, the association with intellectual disability (ID) has not been investigated.Objectives: To examine the association of maternal antidepressant medication use during pregnancy with ID in offspring and investigate the importance of parental mental illness for such an association.Design, Setting, and Participants: A population-based cohort study of 179 007 children born from January 1, 2006, through December 31, 2007, with complete parental information from national registers who were followed up from birth throughout 2014.Main Outcomes and Measures: We estimated relative risks (RRs) and 95% CIs of ID in children exposed during pregnancy to any antidepressant medication or specifically to selective serotonin reuptake inhibitor (SSRI) antidepressants, all other non-SSRI antidepressants, or other nonantidepressant psychotropic medications. Analyses were adjusted for potential confounders. In addition to full population analyses, we used a subsample to compare mothers who used antidepressants during pregnancy with mothers who had at least one diagnosis of depression or anxiety before childbirth but did not use antidepressants during pregnancy.Results: Of the 179 007 children included in the study (mean [SD] age at end of follow-up, 7.9 [0.6] years; 92 133 [51.5%] male and 86 874 [48.5%] female), ID was diagnosed in 37 children (0.9%) exposed to antidepressants and in 819 children (0.5%) unexposed to antidepressants. With adjustment for potential confounders, the RR of ID after antidepressant exposure was estimated at 1.33 (95% CI, 0.90-1.98) in the full population sample and 1.64 (95% CI, 0.95-2.83) in the subsample of women with depression. Results from analyses of SSRI antidepressants, non-SSRI antidepressants, and nonantidepressant psychotropic medications and analyses in the clinically relevant subsample did not deviate from the full-sample results.Conclusions and Relevance: The unadjusted RR of ID was increased in offspring born to mothers treated with antidepressants during pregnancy. After adjustment for confounding factors, however, the current study did not find evidence of an association between ID and maternal antidepressant medication use during pregnancy. Instead, the association may be attributable to a mechanism integral to other factors, such as parental age and mother's psychiatric disorder. [ABSTRACT FROM AUTHOR]

The Swedish personal assistance system, facilitated through Swedish legislation (known as the LSS), allows children with profound intellectual and multiple disabilities (PIMD) to receive subsidized personal assistance. This assistance may be either a hired professional from outside the family or a parent paid as a personal assistant. The type of personal assistant can impact activity selection. As noted by bio-ecological systems theory, participation in 'systems' beyond the household is important for a child's cognitive and social development, including the development of children with disabilities. The authors explored whether children's personal assistant type (i.e., external or parental) is related to their presence in socially integrative activities (SIAs) versus non-socially integrative activities (NSIAs). The relationship between children's activity engagement and their personal assistant type was examined via a descriptive, comparative study based on a questionnaire. Sixty families answered, providing quantitative data about personal assistance type across 56 common family activities. Children's external assistants showed a greater presence in SIAs than children's parental assistants, who showed a greater presence in NSIAs. The level of activity engagement between personal assistant type, however, had a less direct relationship. In accordance with bio-ecological systems theory, activity selection can influence the child's cognitive and social development. Ultimately, this study suggests that external assistants partake in more SIAs than parental assistants, likely as a function of providing respite for families. This respite stems from the LSS's implicit role for external personal assistants to also serve as relief for parents. In turn, by facilitating exposure to broader systems, these external assistants can play a critical role in children's social and cognitive development. [ABSTRACT FROM AUTHOR]

This article discusses voluntary childlessness and reaching adulthood in Sweden, focusing on childfree women and men with intellectual disabilities (IDs). The article is based on interviews with 19 childfree individuals, four of whom had IDs. It focuses on motives for voluntary childlessness, with three types of motives being mentioned only by the interviewees with IDs; namely the difficulties of parenthood and of building relations with children, the risk of heredity and the maliciousness of children. The interviews have been analysed with relevance to power axes of gender, age and abilities, and these three motives may be seen as results of the interviewees' ascribed position as intellectually disabled and of the segregation in society between able and disabled individuals. The article also includes a discussion about how to achieve ‘adult status’ when parenthood is ruled out. Other issues in everyday life seem more important than parenthood, according to the individuals with IDs. [ABSTRACT FROM AUTHOR]

Background As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical activity level was associated with the body mass index (BMI). Materials and methods Fifty-two adolescent and young adult women and men with intellectual disability and 48 without intellectual disability, between the ages 16 and 20 years, BMIs ranging from 16.3 to 50.3 kg/m², were measured for number of steps taken with a pedometer for five consecutive days (Sunday-Thursday). Results The only group to meet recommendations regarding number of steps (10 000-12 000/day) was women without intellectual disability. No significant associations were found between total number of steps taken and BMI. Results The only group to meet recommendations regarding number of steps (10 000-12 000/day) was women without intellectual disability. No significant associations were found between total number of steps taken and BMI. [ABSTRACT FROM AUTHOR]

The quality of meal-oriented support for people with intellectual disabilities is important for their health. The aim of the present study was to explore the experiences of meal-oriented support and diet counselling for adults with intellectual disabilities living in supported housing, from the perspective of housing staff and mothers. Five focus group interviews, including nine supporting staff members and nine mothers, were conducted. The interviews were analyzed using systematic text condensation. Five themes appeared; Extensive needs of the individual, Staff skills determine the food intake, Informal caregivers make up for shortage of support, Effective collaboration with a registered dietitian is needed and Responsibility of the organization state that professionalization of staff is needed. Lacking resources, such as time and nutritional knowledge, insufficient considerations of individual needs, and high staff turnover influence the meal-orientated services negatively. This study brings to the fore, staff working practices and the complexity of providing meal-oriented support for people with intellectual disabilities. Staff need skills to perform individually tailored support. This is best accomplished through effective collaboration between housing staff and relatives underpinned by knowledge from a registered dietitian. The working practices must be structured at the organizational level of the services. [ABSTRACT FROM AUTHOR]

Discusses services for people with mental disabilities in Sweden. Scope of the 1986 Swedish Act on Special Services and Care of the Intellectually Disabled; Estimated number of people in the country who are identified as mentally retarded; Background on the establishment of mental institutions in the country.

Background Families with parental intellectual disabilities (ID) are likely to need support in achieving a decent family life. In order to accurately plan for such support services, society needs data regarding the occurrence of those parents and their children. The aim of this study was to investigate the 5-year incidence of children born to women with ID in a county in Sweden. Methods Women born between 1975 and 1989 were identified from school registers for children and adolescents with ID in the county of Blekinge. The women's personal identification numbers were, in 2010, linked and matched with the Swedish Medical Birth Register. Results In total, 98 women with ID were identified. Nine of these had given birth to children; one woman to two children and eight women to one child each. The 10 children were born between 2004 and 2008. Conclusion The incidence rate calculated as a result of the present study indicates that approximately 2.12 per 1000 children are born per year to women with ID. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. On the basis of this, the prevalence of children (aged 0-18 years) being born to women with ID is estimated at about 4050. [ABSTRACT FROM AUTHOR]

Background: Living in the digital era, young adults with intellectual disabilities use diverse digital products, the Internet, and social media in their daily lives. However, they may need support in digital undertakings as in other aspects of life. In a disability service context, staff are primary support providers but are restricted and guided by organisational goals and strategies. Previous research has shown that staff have dual roles as support providers and executors of organisational ambitions. This study analyses the motivations and prerequisites, as well as the obstacles to the implementation of digitalisation at a strategic level of disability services. Method: Qualitative semi‐structured interviews were conducted with public officials and municipal politicians responsible for providing disability services. A thematic analysis was performed using a constructionist perspective. Findings: Three themes were identified: Intertwined ideals of digital infrastructures in disability contexts, culture of vertical governance, and developing competencies. These themes can be seen as pillars of the digitalisation of digital services at the organisation's strategic level. In addition to shedding light on specific issues, these themes reveal underlying issues relating to conceptions of support practices and organisational culture. Conclusion: Digitalisation is motivated by a desire to preserve the organisation's legitimacy and be a relevant service provider. Digital infrastructure is required for digitalisation but is lacking because of intertwined legal and moral issues. Digitalisation also appears to be hindered by organisational structures and organisational culture, whose impact greatly outweighs that of digital issues. Accessible summary: People with disabilities face problems arising from inaccessibility and lack of support with digital issues.We studied how disability organisations work on digitalisation at the strategic level.The creation of digitally inclusive disability organisations presents legal, moral, and institutional challenges.It is difficult to identify and plan for the digital competencies needed to support staff and persons with intellectual disability when implementing digitalisation.Digital competence among support staff and people with intellectual disabilities is difficult to measure and plan forImplementation at the strategic level is important because it strongly affects whether and how people with intellectual disabilities become digitally included. [ABSTRACT FROM AUTHOR]

This paper uses a neo-institutional perspective to examine possibilities and obstacles for participation in coordinated individual planning (CIP) for people with intellectual disabilities. CIP is a tool for interprofessional and interorganizational coordination with the objective of creating a joint plan for a person needing cohesive care. Participation by the service-user is considered important for effective coordination but involving someone with an intellectual disability may require special adaptations. A thematic analysis of interviews with 17 professionals from different organizations in Sweden reveals that service user participation is considered an important goal by professionals, but also that it is difficult to put into practice. The results indicate that CIP is characterized by tensions and policy-practice decoupling that limit the service-users' possibilities for participation. Points of interest: Different organisations and professionals sometimes give support to one individual. They need to coordinate this support. It is necessary for service-users to be involved in coordinated planning of the support and care they need. The study analyses how professionals experience participation in coordinated planning when the service-user has an intellectual disability. The study found that coordinated planning can be difficult to adapt for service-user participation. The study found a gap between ideals and practice caused by the organizations' rules, norms, and structures. The findings reveal a risk of focusing on changing the service-user's behaviour or situation rather than addressing problems within the organizations. [ABSTRACT FROM AUTHOR]

This article focuses on severe mental retardation in children in a northern Swedish county. In an unselected series of children with severe mental retardation born in 1959-1970 in a northern Swedish county, an analysis was made of the incidence, prevalence, gestational age, birth-weight, associated central nervous system disorders, and aetiological and pathogenetic aspects. The children concerned were born in the period 1959-70, i.e. just before the gradual introduction in Sweden of prenatal diagnosis and other measures to prevent congenital disorders, and at the same time a period with a decrease in perinatal mortality.

A total of 149 children aged 13-17 years were examined. 83 were mildly and 66 severely mentally retarded. These children, especially the severely retarded ones, are representative of all mentally retarded children born in 1966-1970 and living in Göteborg, Sweden. 64% of the severely mentally retarded and 57% of the mildly mentally retarded children were suffering from a handicapping psychiatric condition. Autism-like 'psychotic behaviour' was common in the severely retarded. 0.2% of the total child population aged 13-17 years suffering from the combination of mental retardation and 'psychotic behaviour'. Epilepsy was associated with psychiatric abnormality, but Down's syndrome was generally not so associated. [ABSTRACT FROM AUTHOR]

The author examines the geographical differences in the prevalence of mental retardation. As part of his research, he discusses various epidemiological studies that was carried out in Sweden. He denotes that mental deficiency may develop through one of the four mechanisms including polygenic inheritance, simple inheritance, chromosomal anomalies and external factors. In addition, he claims that the four processes that can distort the balance in the gene pool include genetic selection, mutation, genetic drift and migration. He believes that the prevalence of mental deficiency is due to a form of selective migration.

Accessible summary: Many day centres in Sweden closed during the COVID‐19 pandemic.Some day centres provided online activities like FaceTime calls and short films instead.This was to help people keep in touch.Some people with intellectual disabilities also got involved in making films when lockdown lifted.People with intellectual disabilities and staff learned a lot about doing things online and using technology. It would be good to keep this going. Background: The lockdown of a day centre for individuals with intellectual disabilities led to digital activities instead of traditional physical presence. Method: This study is based on 17 interviews with staff of a day centre, directors of day centres and support persons. Findings: The purpose of the digital activities was to overcome physical distance and to create "social connectedness" with service users at a day centre. Emphasis was placed on recognisability to meet the needs of the service users. When the lockdown was lifted, service users were included in the production of digital artefacts. There were also obstacles to digitalisation: some service users had no access to Internet or tablets at home, some lawyers forbid the use of common digital programmes and service users were denied being visible on social media, support persons lacked digital competence and were reluctant to digital activities. Conclusions: The experiences of digital activities including coproduction of films made individuals with intellectual disabilities active and visible on social media. This might facilitate the possibilities for future digital inclusion in society. The support from staff at the sheltered accommodations was vital and when it succeeded it promoted a more holistic approach to the service users' everyday lives. [ABSTRACT FROM AUTHOR]

The authors discuss recent developments in services for people with intellectual disabilities (ID) in the Nordic countries. They note that all of the countries saw important reforms during the 1990s, regarding both deinstitutionalization and decentralization. However, they posit that the litmus test of the reforms is not what happens during reform years, but after the reform energy decreases and political attention fades. Thus, developments after 2000 are of particular interest. The comparative analysis is based on research reviews in the five Nordic countries. The analysis observed a trend toward larger group homes and congregations, inequality across municipalities, marketization, and new public management, but also an increasing emphasis on consumer rights and the use of the personal assistance scheme in services for people with ID. The authors conclude that diverging trends coexist, with improvements going together with significant setbacks. They explore the trends from a political science perspective and, in particular, note how they relate to recent shifts in public management and changing drivers of change. [ABSTRACT FROM AUTHOR]

This article explores intersecting notions of leisure among middle-aged people with intellectual disabilities in the setting of the Swedish welfare state. The participants are recipients of long-term disability services and have experienced the changing ideological frameworks of the welfare effort, which has recently focused on normalisation, inclusion and participation. Structured activities are arranged by disability services in order to normalise living conditions and provide recreation for disabled people. However, the range of activities is constrained by financial resources, by notions of gender and age and by an institutionalised emphasis on the work ethic - leading to constructions of leisure partly as 'time beside' where 'free time' activities should not interfere with the duties of the working week. The participants' limited resources and their lack of a strong voice limit their ability to demand their legal rights and leave many of them with 'too much time with too little to do'. Key Practitioner Message: ● A common idea of leisure is the relationship between social and physical activities, well-being and health; ● People with disabilities, regardless of age, engage in fewer leisure activities than the general population due to a lack of resources; ● Even with legal rights, the lack of a strong voice as well as institutional constraints limit their leisure opportunities. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various articles within the issue on topics including examining the anxiety in students with intellectual disabilities, analyzes various aspects of parenting in Sweden, and assesses physical activity of men with intellectual disability.

Introduction: Contextual factors influence interventions in healthcare and pose a particular challenge in interventions designed for people with profound intellectual and multiple disabilities (PIMD). Exploring support persons' and health personnel's experience of an intervention may improve our understanding of the influence of contextual factors. Such exploration is important for revealing areas and focus points for future implementations. Therefore, the aim of this study is to explore support persons' and health personnel's experience of contextual factors during involvement in an intervention for people with PIMD. Methods: This focus group study includes eight groups, comprising a total of 34 support persons and health personnel, at habilitation centres at four regions in central Sweden. Data were analysed inductively using a content analysis approach. Results: Three themes emerged from the analysis of the informants' perspectives on the contextual factors: (1) structure and support enhances intervention feasibility; (2) an intervention's benefit for people with PIMD increases its acceptability; and (3) being engaged and involved increases support persons' and health personnel's motivation. Our findings show that the implementation of an intervention for people with PIMD should focus on the recipients of the intervention in its context, forming a clear communication plan. A training programme should be provided for the recipients and providers of the intervention. Discussion: Finally, the implementation process can be facilitated by creating space for staff to contribute and by encouraging participation and ownership for everyone involved. Using a co-design strategy can enable a shared responsibility to solve the identified challenges, while contributing to the development and design of future interventions for people with disabilities. [ABSTRACT FROM AUTHOR]

Purpose: Adults born with intellectual disabilities (ID) and motor disabilities (MD) have higher risk of dysphagia and should be assessed to decrease risk of severe complications. However, standardised assessment tools in Swedish are lacking. Methods: The Dysphagia Assessment Package (DAP) was cross‐culturally translated from English to Swedish (DAP‐SE) and tested for content validity by an expert group. Face validity was assessed by five speech and language therapist (SLT) during meal observations (n = 10), and the clinical relevance was reported in a study‐specific questionnaire. Results: The DAP‐SE was culturally adapted within the process of translation and was found to contain clinically relevant aspects to assess and suggest further interventions for adults with ID and MD. Face and content validity was confirmed by the expert group. Conclusion: This study, in which the DAP‐SE was tested in a small sample size, provides the first indications of the instrument's validity with respect to evaluating mealtimes, swallowing function and swallowing safety in adults born with ID and MD. The study adds to the knowledge on how to translate and culturally adapt an assessment tool to clinically assess dysphagia on a complex and vulnerable patient group. [ABSTRACT FROM AUTHOR]

One goal of disability policies in Sweden and other countries is to ensure that people with disabilities are afforded an equal level of daily life participation as other citizens. However, few studies have examined this in adults with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD). This study used a phenomenographic approach to interview managers and staff at a social care organisation in a medium-sized Swedish municipality. It aimed to elucidate and describe conceptions of participation to highlight conceptual variations. Divergent conceptualisations were found, reflecting a lack of organisational consensus about the meaning of participation. Trying to fulfil policy goals of daily life participation for adults with PID or PIMD without a common understanding of the meaning of participation is difficult, so people at all levels of an organisation need to have a shared understanding and definition of it. [ABSTRACT FROM AUTHOR]

Background: The study aim was to investigate the efficacy of an intervention designed to provide a basis for informed choices about future parenthood to special upper secondary school students with intellectual disabilities. Methods: A randomised trial with a waiting list control group was used. In total, 108 special upper secondary school students with mild or moderate intellectual disabilities, age 16–21 years, provided informed consent and participated. The intervention included education using the Parenting Toolkit and a Real Care Baby simulator. The analyses included 91 students (intervention group n = 46, 24F/22M; control group n = 45, 26F/19M). Results: The result showed that intervention group changed their attitudes to future parenting, from 'do not know' to 'know', significantly more than control group. The intervention increased knowledge levels in the intervention group. Conclusions: The intervention group showed increased ability to make informed choices and decisions about parenthood. [ABSTRACT FROM AUTHOR]

Young people with intellectual disability seem to be more vulnerable on the Internet than youth in general. Therefore, it is important to investigate not only their strategies for managing negative online experiences but also how they experience Internet-related support. This study applies a qualitative and interpretative approach drawing on individual and pair interviews with pupils in upper secondary special programme schools in Sweden. A thematic analysis resulted in the following themes: 'a lesson to be learned', 'the important role of siblings', 'the dilemma of support' and 'negotiation of control'. With regard to negative online experiences, strategies for managing privacy, safety and risky situations are understood as problem-focused coping and efforts to manage external/internal demands. The central role of social networks is emphasised with regard to Internet-related support. It is concluded that online restrictions may discourage open dialogue. A perspective of positive risk-taking, focusing on opportunities rather than risks, is advocated. This article investigates the participants' perspectives in their own words. The key contribution of the paper is finding out how young people with intellectual disability in Sweden handle negative online experiences and how they experience Internet-related support. The study highlights a range of themes from lessons learned and sibling relationships to problems of support and control that reflect many social and individual characteristics. The participants use different coping strategies to handle negative online experiences. They seem to manage privacy and safety on their own and refuse control in risky situations. With regard to Internet-related support, the participants prefer turning to their social network (family and friends) rather than public authorities (teachers in school). This type of research is important because it focuses on young people with intellectual disability and their vulnerability online as well as the development opportunities for Internet-related support. [ABSTRACT FROM AUTHOR]

The Structured Water Dance Intervention (SWAN) is a dance-oriented aquatic group activity directed to give opportunities for the joy of movement, relaxation, and reduced stress. This study aimed to evaluate the effects of SWAN on salivary cortisol and stress in adults with profound intellectual and multiple disabilities (PIMD). A total of 34 adults with PIMD at four habilitation centres in Sweden completed the SWAN intervention. The intervention was administered for 40 min once a week during a 12-week period. Saliva cortisol was collected in the morning and evening at baseline one week before the intervention, thrice during the intervention period, and one week after the intervention. Moreover, in connection with the SWAN sessions, the participants' level of stress was also assessed by the accompanying assistants. The results showed that salivary cortisol and participants stress decreased significantly, directly after the SWAN sessions compared with measures directly before sessions. The study demonstrates that adults with PIMD have diurnal salivary cortisol patterns consistent with those observed in adults without disability and that the SWAN reduces salivary cortisol levels and stress in people with PIMD; this justifies that SWAN could be considered in the choice of interventions to reduce stress in adults with PIMD. Trial registration: This study is registered 09/04/2019 on ClinicalTrials.gov (ID: NCT03908801). [ABSTRACT FROM AUTHOR]