Background Self-rated participation is a clinically relevant intervention outcome for people with mild intellectual disability. The aim of this systematic review was to analyse empirical studies that explored relationships between either environmental factors or individual characteristics and aspects of participation in young adults with mild intellectual disability. Method Four databases were used, 756 abstracts examined and 24 studies were evaluated in-depth. Results Four aspects of participation were found: involvement, perceptions of self, self-determination and psychological well-being. Reported environmental factors were: social support, choice opportunity, living conditions, school, work and leisure, attitudes, physical availability and society. Reported individual characteristics were adaptive and social skills. Conclusions There is a relative lack of studies of factors influencing self-rated participation and existing studies are difficult to compare because of disparity regarding approaches, conceptual frameworks, etc. For adequate interventions, it seems important to study how profiles of participation are influenced by different patterns of environmental factors and individual characteristics.
Background: Parents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The Covid-19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents’ caregiving. The present study aimed to fill this gap.
Method: Semi-structured interviews with ten Swedish parents with intellectual disability were analysed using thematic analysis.
Results: One broad caregiving-related theme: Increased caregiving demands and reduced resources for coping resulting in strained parent-child interactions and relationships. Four subthemes highlighted influential factors: Pandemic information; professional support; social relationships and informal support; and children’s school activities. Strained parent-child interactions were particularly common in the absence of adapted pandemic information, if professional and informal support were compromised, and if the parents had dealt with school-related changes.
Conclusions: Findings support contextual models of caregiving and a stress-resources perspective, and emphasize the importance of adapted information and support to parents with intellectual disability during crises.
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Background Children with developmental disabilities, e.g. intellectual disability or autism, are reported to have problems in time perception, time orientation or time management, i.e. in time-processing ability (TPA). The aim was to investigate whether the problems described are diagnosis specific or reflect differences in age or in level of TPA.
Methods Using a cross-sectional design, this study investigated if there were different patterns of TPA in 5- to 10-year-old children with (n = 77) and without disabilities (n = 89). The results indicated that the patterns of TPA mainly follow the chronological age of children without disabilities, all clusters differing as regards levels of TPA. Daily time management (as estimated by the parents) and children’s self-rated autonomy differed between clusters and was related to TPA.
Conclusions The level of TPA seems to be a more valid overall base than the type of diagnosis for the planning of interventions in daily time management.
Young adults today have grown up in a society where information and communication technology (ICT) support empowerment and social participation. Young adults with mild-to-moderate intellectual disability are at risk for marginalization by the digital divide. The aim was to map and describe how municipal organizations in Sweden organize support in terms of policy and strategies to enable the use of ICT in social care for adults with a mild-to-moderate intellectual disability. MethodsA quantitative, cross-sectional survey including all municipalities in Sweden (n=290) was conducted (response rate: 51%, n=147). Descriptive statistics were used. Results: Findings indicate a lack of organizational support for staff as well as for young adults with mild-to-moderate intellectual disability. Conclusion: Municipalities request more knowledge about strategies for making ICT available. Despite the lack of comprehensive strategies for ICT, some Swedish municipalities have taken the initiative in this area.
Background
Participation is a central aspect of quality of life, and it is indicative of high‐quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities.
Aim
To describe staff members’ perceptions of what participation means for adults with profound intellectual and multiple disabilities.
Method
Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation.
Results
The interviews revealed conditions for participation at individual, staff and organisational levels.
Conclusion
Participation appears to be an un‐reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers’ perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation.
Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Materials and methods: Eight families participated over two years in eco-cultural family interviews and social networks interviews collected at home visits. Data were analyzed descriptively and by manifest contents analysis. Results: Results showed variations in sustainability of daily routines over time across families. The sustainability was linked to fathers' involvement, couples' connectedness and emotional support. Stability and change of social networks were characterized by low overlap between the child and family networks, the children's communicative dependency and low density of able communication partners. Conclusions: The results indicate that patterns of stability and change were linked both to family resources and child characteristics.