| 1. |
- Almqvist, Lena
(author)
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Patterns of engagement in young children with and without developmental delay
- 2006
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In: Journal of Policy and Practice in Intellectual Disabilities. - Malden, MA : Blackwel. - 1741-1122 .- 1741-1130. ; 3:1, s. 65-75
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Journal article (peer-reviewed)abstract
- The purpose of this study was to identify patterns of process characteristics capturing the essence of children's experiences in their natural environment and their possible association with health and well-being operationalized as engagement for young children with and without developmental delay. Data were gathered from 1035 children between 1 and 3 years in community-based preschools. Teachers and parents responded to questionnaires concerning interaction, activity, and engagement, as well as demographic and biopsychosocial information. A cluster analysis was conducted to find homogenous patterns related to engagement. Five distinct patterns were identified, all related to different levels of engagement. Several factors, within both the child and the environment, were associated with high levels of engagement. Interaction skills and availability of activities appear to be strong predictors of high-level engagement, regardless whether or not the child has been identified as developmentally delayed.
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| 2. |
- Arvidsson, Jessica, 1982-, et al.
(author)
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Post-school destination : A study of women and men with intellectual disabilities and the gender-segregated Swedish labor market
- 2016
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In: Journal of Policy and Practice in Intellectual Disabilities. - Hoboken, USA : Wiley-Blackwell Publishing Inc.. - 1741-1122 .- 1741-1130. ; 13:3, s. 217-226
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Journal article (peer-reviewed)abstract
- Knowledge about people with intellectual disability (ID) and their connections to the labor market is scarce. The aim of this study was to describe and analyze the entry into and representation in the Swedish labor market for people with ID, discussed with a special focus on the gender perspective. This study included 2,745 individuals (30% women and 70% men) who graduated from Swedish upper secondary schools for pupils with intellectual disability (USSID) in the 2000s, and who were defined as employees in 2011. Graduation data from 2001 to 2011 were analyzed in relation to employment data from 2011 and adjusted for gender, graduation year, and educational program. Results show that men who attended a national USSID program and graduated between 2001 and 2006 were the most likely group to have a job. The authors conclude that the gender differences in the Swedish labor market are more clearly pronounced among women and men with ID in relation to employment rate, wage levels, and professions than in the general population. Education, welfare-services, and interventions specifically targeted to meet the needs of people with ID have to develop in more gender-sensitive ways.
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| 3. |
- Björne, Petra, et al.
(author)
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The Use of Restrictive Measures in Community Services for People With Intellectual Disabilities in Sweden
- 2022
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130. ; 19:2, s. 193-201
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Journal article (peer-reviewed)abstract
- 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.
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| 4. |
- Boren, T., et al.
(author)
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Sweden's LSS and Social Integration : An Exploration of the Relationship between Personal Assistant Type, Activities, and Participation for Children with PIMD
- 2016
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130. ; 13:1, s. 50-60
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Journal article (peer-reviewed)abstract
- 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.
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| 5. |
- Chadwick, D., et al.
(author)
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Digital inclusion and participation of people with intellectual disabilities during COVID-19 : A rapid review and international bricolage
- 2022
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130. ; 19:3, s. 242-256
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Journal article (peer-reviewed)abstract
- The COVID-19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in people's lives. This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two-step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID-19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID-19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID-19 was exacerbated by sociopolitical, structural, individual and support-related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well-being and autonomy, COVID-19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be included in the digital world at this essential time and into the future.
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| 6. |
- Elinder, Liselotte S., et al.
(author)
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Effect and process evaluation of a structural health intervention in community residences for adults with intellectual disabilities
- 2018
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In: Journal of Policy and Practice in Intellectual Disabilities. - : John Wiley & Sons. - 1741-1122 .- 1741-1130. ; 15:4, s. 319-328
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Journal article (peer-reviewed)abstract
- Interventions to improve health among adults with intellectual disabilities (ID) living in community residences are needed as unhealthy behaviors, obesity, and chronic diseases are more common in this group than in the general population. This study evaluated effectiveness of a structural health intervention, a study circle for paid carers aiming to improve health promotion work routines for residents, and explored barriers and facilitators in the implementation process. A quasi-experimental design was used. Eight municipalities with 84 community residences agreed to participate with 70 of these completing the study. A 26-item questionnaire was used regarding staff work routines in three domains (general health promotion, food and meals, physical activity) and a total score to evaluate effectiveness. An inductive qualitative method was used to explore barriers and facilitators in the implementation process. The intervention group (n = 42 residences) improved their health promoting work routines significantly more than the comparison group (n = 28 residences) in the domains of general health promotion (p =.05), physical activity (p =.02), and for the total score (p =.002), but no significant change was found in the food and meal domain (p =.11). Regarding barriers and facilitators in the implementation process, a “Need for a supportive structure and key persons with a mandate to act,” was identified as an overarching theme. Barriers and facilitators were identified within four categories: (1) characteristics of the study circle, (2) staff capacity, (3) organizational capacity, and (4) external support. This study provides evidence that a structural intervention targeting staff in community residences for people with ID can improve health promoting work routines and that the results might be generalizable. If disseminated on a wider scale, this intervention has the potential of improving health and preventing obesity and other chronic diseases in adults with ID.
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| 7. |
- Ericsson, Kent, et al.
(author)
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China-Sweden partnership : areas of ongoing development in intellectual disabilities.
- 2008
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130. ; 5:2, s. 112-117
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Journal article (peer-reviewed)abstract
- At the initiative of the Government of the People's Republic of China, a letter of intent concerning a joint undertaking for studying children with intellectual disability in China was formulated together with the Swedish Government's Ministry of Social Affairs in the early 1990s. The Swedish Board of Health and Welfare invited Uppsala University to set up a consulting team through the Centre for Disability Research. On the Chinese side, the task was given to China Disabled Persons' Federation (CDPF), whose overriding task is the representation of and guarding the legal rights of persons with disabilities. Under the auspice of the CDPF, researchers from China and Sweden jointly identified three areas of work: iodine deficiency, developmental screening, and rehabilitation. This article describes the project's activities within the Sino-Swedish Project, initiated in 1995. The Sino-Swedish Project was implemented in the least developed and consequently poorest western/northwestern interior parts of the country and overall work was carried out on a county-level (i.e., target areas were predominately rural albeit located in townships and villages). The experiences gained have formed the basis for further implementation throughout the country.
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| 8. |
- Ineland, Jens, 1972-, et al.
(author)
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Handling Plurality and Dealing with Difficult Work Experiences : A Comparative Study of Human Service Professionals’ Work with Individuals with Intellectual Disabilities
- 2018
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130. ; 15:1, s. 36-42
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Journal article (peer-reviewed)abstract
- This article examines how administrators in social services (n = 70) and habilitation staff in healthcare (n = 40) in Sweden experience difficulties in their work with people with intellectual disabilities. The research aim was to investigate the most typical aspects of difficult working situations and to apply a comparative analysis of differences and similarities, where the respondents' organizational affiliations are taken into account. The results are primarily based on a content analysis. Contextual standardized questions were included in this study. The results revealed that experiences of difficulties were categorized in four typological themes: difficult situations associated with (1) structure, (2) professional role, (3) relationships, and (4) collaboration. The respondents' experiences of difficult situations in social services and healthcare organizations did not correspond to the respondents' work dissatisfaction or unclear goals. On the contrary, handling this plurality within a specific organizational context was a fundamental aspect of professionalism. The different characteristics of the organizations in this study reflected two different institutional logics. While the administrators mainly operated within an administrative logic based on a regulatory framework, the habilitation staff operated within a therapeutic logic based on a cognitive framework. Consequently, the two groups had their own specific norms and rule systems, which influenced when, and to what extent, everyday situations were experienced and defined as difficult. The organizational context seems to influence experiences of difficult situations in the work with people with ID and this calls for a discussion of how it impacts the quality of services within intellectual disability services.
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| 9. |
- Kjellberg, Anette, et al.
(author)
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Citizenship and Voting: Experiences of Persons With Intellectual Disabilities in Sweden
- 2013
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley-Blackwell. - 1741-1122 .- 1741-1130. ; 10:4, s. 326-333
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Journal article (peer-reviewed)abstract
- 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.
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| 10. |
- Lundström, Mats, et al.
(author)
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Personality impact on experiences of strain among caregivers exposed to violence in care of people with learning disabilities
- 2007
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In: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley-Blackwell Publishing Inc.. - 1741-1122 .- 1741-1130. ; 4:1, s. 30-39
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Journal article (peer-reviewed)abstract
- Explored are the relationships among personality and emotional reactions, work‐related strain, and experiences of burnout among staff exposed vs. not exposed to violence when caring for people with intellectual disabilities (ID). Questionnaires measuring personality, emotional reactions, strain and burnout, and exposure to violence were distributed to staff (n = 112) working in 22 group homes for people with ID aged 18 years and older in a community in northern Sweden. The results did not show evidence of a direct influence of personality variables on exposure to violence when working with people with ID and no direct relationships were found between exposure to violence and the staff members’ personality traits as measured with the Temperament and Character Inventory and Rosenberg’s Self‐Esteem Scale. Although the influence of personality traits on how the staff members experienced violence could not be clearly determined, the authors found an association between personality and strain and the risk of burnout in that certain staff exposed to violence felt more emotionally exhausted than did staff who were not exposed. The knowledge of the relationships among violence, personality, and risk of burnout may be important for the understanding which staff need special supports when working with people with ID.
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