Disability Studies in Iceland: past, present and future

Disability Studies is a new interdisciplinary academic field that has developed over the past two decades. The aim of this paper is to introduce Disability Studies in Iceland including its roots, context, development, main characteristics and future prospects. Icelandic Disability Studies has developed in Nordic and international contexts and shares theoretical origins and location in the academic landscape. Early beginnings of Disability Studies in Iceland can be traced back to the mid-1990s but the first and only academic programme in Disability Studies was launched at the University of Iceland in 2004, providing this young field with an institutional base and academic recognition. Main characteristics of Disability Studies in Iceland are its growing interdisciplinary nature and close cooperation with disabled people and the disability movement, parents, professionals and policy-makers. Today, Disability Studies is a well-established field within Icelandic academia and operates in the context of extensive international ties and connections

Family-centred services for young children with intellectual disabilities and their families: Theory, policy and practice

This paper outlines the reported discrepancies between the aims of the welfare services in Iceland and the experiences of parents raising young children with intellectual disabilities. Prevailing views on disability and service delivery were also considered. A multi case study design was employed to reflect the situation in different parts of the country. Families of eight children with intellectual disabilities and professionals in three different municipalities formed the cases. The findings reveal a high convergence between the three cases with variations based on individual experiences rather than geographical location. Overall, parents praised the preschools but experienced support services often as fragmented and uncompromising. Particular components of the services were consistently regarded as hard to reach and not in accordance with the needs of the family. Culturalhistorical activity theory is introduced as a beneficial framework for further study and system improvement.Peer Reviewe

Child and parent perspectives of life quality of children with physical impairments compared with non-disabled peers

Publisher's version (útgefin grein).Background: Life quality has become a widely used concept within rehabilitation and occupational therapy practice. Aim: This study explored child and parent perspectives of life quality of children with physical impairments compared with a group of non-disabled children. Method: Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. For children with physical impairments, reports from 34 children and 40 parents were included in the analyses, and in control group reports from 429 children and 450 parents were included. Results: Children with physical impairments evaluated their life quality within the average range on four out of five life quality dimensions. The lowest scores were within the physical well-being dimension. Self-reported scores of children with physical impairments were higher than those of their parents on all dimensions except autonomy and parent relations. Thus, the parents considered more environmental and personal factors to negatively influence their child’s life quality than children did themselves. Conclusion: Children with physical impairments experience their life quality similarly to non-disabled children. Significance: Focus on life quality can help occupational therapists to identify what circumstances positively or negatively influence client well-being and to focus more on contextual factors that contribute to disablement.We would like to thank the families who participated in the study. We would also like to thank Professor Barbara E Gibson at the University of Toronto who contributed to the research. The study was supported by the Icelandic Research Fund under Grant number 174299-051; and the Doctoral Grants of The University of Iceland Research Fund.Peer Reviewe

Agreements and disagreements between children and their parents in health-related assessments.

To access publisher's full text version of this article click on the hyperlink belowPURPOSE: To systematically review research concerning parent-child agreement in health-related assessments to reveal overall agreement, directions of agreement, and the factors that affect agreement in ratings. METHOD: The Uni-Search and five additional databases were searched. Children's health issues were grouped into psychosocial issues including autism and ADHD, and physical and performance issues including pain. Measures used for comparison were those addressing (a) psychosocial functioning, (b) physical and performance functioning, and (c) health-related quality of life. RESULTS: Totally, 39 studies met the inclusion criteria, comprising 44 analyses in all since four studies contained more than one analyses. Moderate child-parent agreement was demonstrated in 23 analyses and poor agreement in 20 analyses. Several analyses found more agreement on observable/external than on non-observable/internal domains. Overall, parents considered their children had more difficulties than did the children themselves, although there were indications that for children with physical performance issues, parents may underreport their children's difficulties in emotional functioning and pain. There were no consistencies in differences between children's and parent's ratings on levels of agreement with respect to the children's health issue, age or gender. CONCLUSIONS: Discrepancies between child and parent reports seem to reflect their different perspectives and not merely inaccuracy or bias. Implications for Rehabilitation In general, parents consider their children to have more difficulties - or more extensive difficulties - than the children themselves think they have. The perspectives of the child and his or her parents should be sought whenever possible since both constitute important information concerning the child´s health and well-being. Children with physical and performance issues reported more difficulties than their parents concerning the children's emotional functioning and pain. Clinicians should prioritize obtaining children's views on subjective aspects such as emotional issues as well as on pain

Community participation and environment of children with and without autism spectrum disorder: parent perspectives.

To access publisher's full text version of this article click on the hyperlink belowThis study explored parent perspectives of participation patterns and environmental supports and barriers for high-functioning children with autism spectrum disorder (ASD) within their communities compared with a group of children without ASD.The Participation and Environment Measure for Children and Youth was used to gather online data from parents of 99 children with ASD and 241 children without ASD. Mann-Whitney U test and chi-square tests were used to explore differences between groups and Cohen's d was calculated to examine effect sizes.Significant differences between children with and without ASD were observed for all participation and environment summary scores. Children with ASD participated less frequently, were less involved, and their parents were less satisfied with their child's participation in community-based activities. Parents of children with ASD also identified fewer supports for their child's participation and more environmental barriers than other parents.Children with ASD participated less in community-related activities than children without ASD as perceived by their parents. Barriers limiting community participation included features of the social and physical environment and limited resources.Occupational therapists should focus on decreasing environmental challenges in their efforts to facilitate participation of children with ASD in the community.University of Akureyri University of Iceland Research Fund

Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports.

To access publisher's full text version of this article click on the hyperlink belowStudies have shown parents to report lower quality of life for their children with autism spectrum disorder than children's self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with paired controls without autism spectrum disorder; (2) explore how parents of high-functioning children with autism spectrum disorder rate their children's quality of life compared with parents of paired controls; and (3) compare child self-reports of quality of life with their parent's proxy-reports for both groups of children. Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with autism spectrum disorder, 211 controls and their parents were included in the analyses. Compared with controls, children with autism spectrum disorder had lower means on all quality of life dimensions. Parents of children with autism spectrum disorder evaluated their children's quality of life lower on all dimensions than did parents of controls. On four out of five dimensions, children with autism spectrum disorder reported better quality of life than did their parents. Despite differences in ratings children with autism spectrum disorder and their parents agreed on the most problematic dimensions, namely, social support and peers and physical well-being. Our results highlight the importance of seeking the viewpoints of both children and their parents.University of Akureyri University of Iceland Research Fund