Disabilities In Sweden Research Articles

Reading acquisition among students in Grades 1-3 with intellectual disabilities in Sweden.

This study investigates the reading performance of younger students with intellectual disabilities to gain insight into their needs in reading education. Participants were 428 students in Grades 1 to 3 in Sweden. They performed LegiLexi tests measuring pre-reading skills, decoding and reading comprehension based on the model of Simple View of Reading. Results demonstrate a great variation in reading acquisition among students. Some students are able to decode single words and read shorter texts with comprehension already in Grade 1. Other students still struggle with learning letters and developing phonological awareness in Grade 3. According to their longitudinal data over grades, results show that most students progress in pre-reading skills, decoding, and reading comprehension. Hence, assessing reading skills among students with intellectual disabilities in Grades 1-3 using tools aligned with the Simple View of Reading seems applicable and informative for teachers. This study underscores the significance of informed instructional practices for empowering these students in reading education.

Relatives’ experiences of quality of healthcare services for adults with profound intellectual and multiple disabilities in Sweden

ABSTRACT Introduction There is little research regarding quality of health care for people with profound intellectual and multiple disabilities (PIMD), who often are represented by their relatives, because of their limited communication. The aim of this study was to explore experiences and perspectives of relatives regarding healthcare services for adults with PIMD. Method Twelve semi-structured telephone interviews were conducted involving close relatives of people with PIMD: mothers (n = 7), fathers (n = 2), brothers (n = 2) and a sister (n = 1). Qualitative content analysis was used. Results Three themes emerged from the material: (1) Holistic view and responsibility, (2) Complexity and specialisation require coordination, and (3) Specific knowledge about the individual with PIMD. Conclusions The relatives experienced that quality of health care should be based on a holistic view incorporating special competence and coordination. They emphasised the importance of an alliance, leveraging the relatives’ person-specific knowledge alongside healthcare professionals’ specialist competence.

Matching Process Concerning Children With Disabilities in Family Foster Care

ABSTRACTChildren with disabilities are over‐represented in foster care and exposed to more disruptions. This is unfortunate because they need long‐term relationships and predictability, as well as access to special schools and health care. Disruption can be the result of a poor match between the child and the foster family. In this article, we focus on the matching process in relation to children with disabilities. Zeijlmans et al. describe matching as the process by which social workers move from principles of good matching to realistic matching, depending on existing premises. Using their model, we analyse the matching process for children with disabilities in Sweden. The study is based on 31 individual interviews and six group interviews with social workers and social work managers. They describe how they take into account the family climate, family composition and prior knowledge and/or experience of disability in the foster home. However, disruptions occur even when these conditions are met. Stable placements seem to be more related to the fostered child's progress when the family's efforts are rewarded. We also address the complex issue of what disability actually means in the context of foster care, given the interrelatedness of trauma, maltreatment and impairment.

The meaning of adapted ice-skating for children and youths with disabilities

Purpose Children and youths with disabilities have low levels of physical activity and limited opportunities to participate in physical activity. This study aimed to explore the lived experiences and meaning of an adapted ice-skating approach with access to a tailored harness system as a physical activity for children and youths with disabilities in Sweden. Materials and methods Semi-structured interviews were conducted with 12 guardians, 5 ice-skating trainers and 15 ice-skating children and youths with disabilities. The interviews were supplemented with participant observations of 23 children and youths with disabilities while ice-skating. Results Four categories emerged: “To grow as a person,” “To arouse zest for life,” “To train for life” and “To become part of society.” Ice-skating was found to be a source of joy of movement, zest for life and longing, enabling children and youths with disabilities to explore and develop their abilities, social interactions, confidence, identity, and independence in a safe and joy-bringing context. Conclusion The study highlights social and existential dimensions of an adapted ice-skating approach with access to a harness system tailored for children and youths with disabilities, that enables them to be included in ice-skating, regardless of disabilities, creating increased opportunities for physical activity and movement.

Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support.

To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support. Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression. Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found. Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.

Social work practices with victims of violence among people with cognitive disabilities

ABSTRACT People with cognitive disabilities are exposed to significantly higher rates of violence in close relationships than the general population. However, social workers may find it challenging to identify victims among them, make risk assessments, and provide support. This study contributes to the field by describing and analysing social workers’ practices with victims of violence in close relationships among people with cognitive disabilities in Sweden. Analysis of five focus-group discussions including 20 social workers revealed four main themes that describe the practices used with these victims, ‘Competency’, ‘The system of collaboration’, ‘Protective and supportive measures’ and ‘Instruments and tools’. Sub-themes illuminate the differences in competency and resources offered to victims of violence in close relationships between mainstream victim services and disability services. Mainstream victim services have a lack of practices adapted for people with cognitive disabilities, and disability services have a lack of practices for victims of violence. Additionally, these services were found to have insufficient collaboration. The findings are discussed in relation to previous research and theory. We suggest that future research should investigate the prerequisites for services to collaborate.

Patterns of mental health problems and well-being in children with disabilities in Sweden: A cross-sectional survey and cluster analysis.

Children with disabilities have an increased risk of mental health problems. Patterns of mental health problems and well-being may vary. To identify patterns of mental health problems and well-being in children with disabilities in Sweden, and investigate the influence of parental background (migration, education), and child cognitive level. In this cross-sectional study, cluster analysis was used to analyse parents' ratings of conduct problems, emotional symptoms, and prosocial behaviour on the Strengths and Difficulties Questionnaire (SDQ) in children with disabilities (n = 136). The influence of parental background (migration, education) and child cognitive level on cluster membership was explored through multinomial logistic regression. Five clusters of mental health patterns emerged. Three clusters had mean ratings near or past clinical cut-off for one each of the SDQ-subscales. One cluster had difficulties on all three subscales. Greater child cognitive difficulties increased the likelihood of low prosocial behaviour (OR 2.501, p < .001) and of difficulties on all three subscales (OR 2.155, p = .006). Parental background did not influence cluster membership. Children with disabilities display varying mental health patterns. Awareness of the complexity of mental health patterns among children with disabilities is important. Screening and support for emotional symptoms and prosocial behaviour deficits should be considered for children with conduct problems.

Contemporary Accommodation Services for People with Psychiatric Disabilities – the Simple Taxonomy for Supported Accommodation (STAX-SA) Applied and Discussed in a Swedish Context

This article focuses on the stock of accommodation service units for people with psychiatric disabilities in Sweden and the classification of supported accommodation. We examined 122 units in 12 municipalities in Sweden and classified them according to the Simple Taxonomy for Supported Accommodation (STAX-SA). We found an obvious variation in the field and a movement into a recovery-oriented direction and towards individuality. There is an emphasis on Move-On that seems to expand into and beyond floating outreach support, and there is a relaxation of service units&rsquo; boundaries concerning commitment and target groups. The correspondence to STAX-SA was quite low (48%), and the applicability to &lsquo;real world&rsquo; services was not satisfactory. When capturing variation and change in a rich dataset, STAX-SA is too reductive. However, STAX-SA was a successful point of departure in the analysis that opened up for identifying diversities and movement. We suggest some adjustments to increase its applicability.

Mental health supported accommodation services in a post-deinstitutionalised era

The movement towards deinstitutionalisation of mental health services has created a space for new and community-based solutions in western countries, but the field still seems to lack coherent ideological and practical features. This is also evident for issues related to housing. The aim of this article is to examine the characteristics of supportive accommodation services for people with psychiatric disabilities in Sweden, according to the experiences of local service providers. The focus is placed on the services’ organizational setting, main orientation, and conceptual content. This article is based on a multiple case study of ten Swedish municipalities, purposely selected regarding size, location, and demographic features. Data mainly consist of interviews with key informants in the social service organisation. The results indicate the emergence of a new generation of service users with complex needs, who challenge both the organisation and the content of the service offered. Group homes and mobile housing support appeared as pillars in the service supply, but several local and pragmatically oriented solutions were also identified, as well as ambitions to scale down the extent of institutional settings. The guiding idea present at most sites is a strive towards increased autonomy among service users.

Quality of Life of People with Mobility-Related Disabilities in Sweden: A Comparative Cross-Sectional Study.

Little is known about the Quality of Life (QoL) and how QoL is related to the social and economic situation of people with mobility-related disabilities in Sweden. QoL and well-being do not only relate to the absence of impairments but also to the level of social inclusion and the economic situation. The objective of this study was to explore if there were differences in QoL between a group with and a group without mobility-related disabilities in Sweden. Cross-sectional data were collected through self-reported questionnaires. WHOQOL-BREF was used to assess QoL. Recruitment was conducted through social media platforms. Comparisons were made between and within groups using the Welch t-test. Generalized linear models were used to predict score change for the WHOQOL-BREF items and domains accounting for sex, age, education, social inclusion, economic situation, and presence of additional or other disability. Included in the analysis was data from 381 participants, 143 with mobility-related disabilities and 238 without. Participants in the mobility-related disability group scored significantly lower than those without on General Health, General QoL, Health Satisfaction, and the four WHOQOL-BREF domains. The group with mobility-related disabilities also reported a lower Social Inclusion Score (SIS) and a higher proportion of people without a cash margin. An increased SIS indicated higher QoL in the generalized linear model, whereas the absence of cash margin and mobility-related disability negatively influenced the QoL scores. This study indicated that a person with mobility-related disabilities has lower QoL than those without mobility-related disabilities. A lower QoL was also related to a lack of cash margin, a lower social inclusion score, and whether there were additional or other disabilities present.

Self-Employment for People with Disabilities: Barriers to and (Im)possibilities in Starting and Running Their Own Business

Little is known about self-employment among people with disabilities in Sweden. The present article contributes knowledge about barriers and opportunities experienced by self-employed people with disabilities and discusses how these affect the labor market inclusion of people with disabilities. The article draws on qualitative, in-depth interviews with 10 self-employed participants with disabilities and one group interview with six participants who were self-employed and had visual impairments. The analysis shows that the participants see self-employment as an opportunity for a more flexible working life. However, the economic redistribution on which they often depend to run their business is conditioned in a way that does not take into consideration their everyday life. Consequently, despite political goals of inclusion and social justice, people with disabilities come to be excluded from yet another arena, that is, self-employment.

Why Are Old-Age Disabilities Decreasing in Sweden and Denmark? Evidence on the Contribution of Cognition, Education, and Sensory Functions.

Improvements in educational attainment, cognitive and sensory functions, and a decline in the prevalence of disabilities have been observed in older adults in Sweden and Denmark. In the present study, it was investigated whether better cognition, higher educational attainment, and improved sensory function among older adults aged 60 and older in these countries have contributed to decreasing rates of old-age disabilities. The analyses were based on repeated cross-sectional data from the Survey of Health, Ageing, and Retirement in Europe for the 2004-2017 period. Descriptive data were used to benchmark the declining prevalence of disabilities, improving cognitive and sensory functions, and increased educational level. The association between time and disabilities was analyzed with logistic regression models, and the contribution of the improved cognitive function, education, and sensory function to the declining prevalence of old-age disabilities was estimated using the Karlson-Holm-Breen method for mediation analysis. The analysis suggests that the declining prevalence of old-age disabilities in Sweden and Denmark between 2004 and 2017 can largely be attributed to improved cognitive function and vision and to a lesser extent by education and hearing ability. These findings raise important questions about the causal mechanisms producing the associations between cognition, education, and sensory functions and disability in older age. Future studies should explore the causal nature of the associations between these mediators and old-age disabilities. In addition, they should explore whether these findings differ across regional and cultural contexts and over different time periods.

Residential care staff are the key to quality of health care for adults with profound intellectual and multiple disabilities in Sweden

BackgroundPeople 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.MethodsThirteen semi-structured interviews with residential care staff (n = 7) and managers (n = 6) were conducted and analysed using qualitative content analysis.ResultsThe 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.ConclusionsThe 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.

The Use of Restrictive Measures in Community Services for People With Intellectual Disabilities in Sweden

AbstractBackgroundCommunity 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.AimThe 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.MethodA 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.ResultsA 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.ConclusionStaff 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.

The digital society comes sneaking in. An emerging field and its disabling barriers

This study examines disabled people’s everyday experience of social exclusion in relation to the rapid growth of digital technologies in everyday practices. It highlights the relationships between the growing theoretical apparatus on how society changes with new digital technologies, and theories about how this might lead to new disabling barriers in the everyday lives of disabled people. To better understand disabled people’s everyday experiences of social exclusion in the digital age, it brings together insights from two different fields: digital technology, mainly in digital social science and digital humanities; and disability studies, with a focus on the digital divide. The study draws on empirical observations, photographs and interviews with adults with various disabilities in Sweden, and analyses their everyday experiences with the help of a theoretical framework. Points of interest To improve participation, it is critical to understand disabling barriers in a digital society. By bringing together digital technology and disability studies, it is possible to understand day-to-day contexts where there is potential for the digital divide to grow, especially for disabled people. Digital technologies designed for use in day-to-day life need to be more inclusive, and the barriers they create for individuals need to be understood before they are implemented. Digital technologies can construct disabling barriers in mundane contexts, even in some non-digital contexts where there is digital technology in the back-end, as for example, the internet of things.

In between special needs teachers and students: paraprofessionals work in self-contained classrooms for students with intellectual disabilities in Sweden

ABSTRACT Based on street-level bureaucracy, this study investigates the paraprofessional role and assignments in self-contained classrooms for students with intellectual disabilities in Sweden. The research design contains a mixed method approach using a digital questionnaire for paraprofessionals (N = 60) and semi-structured interviews with four special teachers and five paraprofessionals. The results demonstrate that paraprofessionals cooperate with special needs teachers and have a supportive role working with students throughout the day. A lack of support for paraprofessionals’ professional development and few opportunities for them to co-plan, co-teach and co-assess with special needs teachers is said to hinder this advancement. The complexity of being both an educator in the classroom and a caregiver taking the responsibility for students’ wellbeing, peer-to-peer relations and care orientated work tasks are discussed.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

Purpose To explore whether the personal assistance (PA) activities provided by the Swedish Act concerning Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote participation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD). Methods Register data and data from two questionnaires were used (N = 2565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015. Results Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older people, and for a particular person category. Conclusions The results offer evidence of a shift to a medical model and indicate a risk of social exclusion due to fewer activities representing an active life. An increase on average of 16 h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD. Implications for Rehabilitation Personal assistance (PA) in Sweden is a supportive measure for persons with disabilities; however, there are few studies to show whether PA activities are fulfilling disability rights of participation in society. The results show that PA activities are used more for medical care and home-based services over the five-year period. The study highlights the importance of monitoring aspects of content to ensure that the activities of PA comply with the policy objectives of the LSS legislation and Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD), i.e., full participation in society. Monitoring efforts should include individualised planning and follow-up, moreover, ensure compliance with social service capacity at PA providers.

The arts: a precious part of special education? How principals value and organise arts education in compulsory school for pupils with intellectual disability in Sweden

ABSTRACT The intersection of arts education and special education as a field has been described as lacking in unity, partly because the practices of its different stakeholders are embedded in either special education or arts education. This paper investigates how principals prioritise teachers’ qualifications when organising arts education in compulsory school for pupils with intellectual disabilities (CSID) in Sweden, what they perceive the value of arts education in CSID to be and how they organise arts education in relation to cooperation between pupils from CSID and compulsory regular school (CRS). These questions were investigated using a questionnaire, which was answered by 124 principals. The results show that around three times as many principals prioritised specialised arts knowledge over competence in special education. However, the degree to which this occurred varied across arts subjects. A majority of the principals valued arts education for the opportunities it offers pupils to develop generic abilities, such as communication skills, creativity, and imagination. Cooperation between CSID and CRS for arts education appeared to depend on how school leadership was organised. The article concludes with suggestions on how the organisation of arts education could be improved in relation to the two areas of expertise and the idea of inclusion.

Constructions of childhood: the assessment of respite care for children with disabilities in Sweden

ABSTRACT This study examines how childhoods are constructed within the assessment process concerning respite care for children with disabilities in Sweden. The social workers need to take into consideration the needs of the child with disabilities as well as those of the parents and siblings. The application for respite care compels the social worker to prioritise needs, evaluate children’s development and define what constitutes a good childhood. One of the results of such a process is a construction of childhood for children with disabilities which contains a strong focus on practising and developing, whereas their siblings are perceived as needing relaxation and quality time with their parents. It matches the childhood sociological concepts of ‘becomings’ and ‘beings’, where children with disabilities are stressed as ‘becoming’ and continually needing to develop their skills.

Disability digital divide: the use of the internet, smartphones, computers and tablets among people with disabilities in Sweden

Although Sweden is one of the most digitalized countries and the Swedish population’s use of the internet is among the most studied in the world, little is known about how Swedes with disabilities use internet. The purpose of this study is to describe use of and perceived difficulties in use of the internet among people with disabilities and to explore digital divides in-between and within disability groups, and in comparison with the general population. This is a cross-sectional survey targeting the same issues as other nationwide surveys but adapted for people with cognitive disabilities. Participants were recruited from May to October 2017 by adaptive snowball sampling. The survey comprised questions on access to and use of devices, and use of and perceived difficulties in use of internet. A total of 771 people responded to the survey, representing 35 diagnoses/impairments. Larger proportions of people with autism, ADHD and bipolar disorder reported using internet than other disability groups. Women with autism used the internet more than any other disability group, and women with aphasia used the internet the least. People with disabilities related to language and understanding reported more difficulties using internet than other disability groups. Larger proportions of participants than the general Swedish population reported not feeling digitally included. In many but not all disability groups, larger proportions of men than women reported not feeling digitally included. Our findings show that there are differences in digital inclusion between sub-groups of diagnoses/impairments. Thus, disability digital divides are preferably investigated by sub-grouping disabilities, rather than studied as one homogeneous group.