Psychometric properties of the client-centred rehabilitation questionnaire-is derived from a large and varied group of rehabilitation users.

PURPOSE: The purpose of this study was to inspect and establish the factor structure of the Icelandic Client-Centred Rehabilitation Questionnaire [CCRQ-is] and investigate the service experiences of a large and varied sample of rehabilitation users. MATERIALS AND METHODS: Altogether 499 rehabilitation users completed the questionnaire. Confirmatory and exploratory factor analysis was conducted for analysis of items. Mann-Whitney's U and Kruskal-Wallis test was used to compare subscale responses based on participants' characteristics. RESULTS: Four factors explained 53,2% of the variance: Respect and attentiveness, Interaction with significant others, Responsiveness to needs and preferences and Education and enablement. Subscales showed internal consistency from 0.72-0.91 and 0.92 for the whole instrument. The subscale Respect and attentiveness represented user centred rehabilitation the most and Interaction with significant others the least. Significant differences in relation to health conditions and age were obtained on all four subscales and differences by gender on one subscale. CONCLUSIONS: Our results suggest the CCRQ-is is a reliable tool that can be used with rehabilitation users with a broad range of characteristics within the Icelandic context. The extent to which the intersection of age, gender and health issues influence users' perception of services needs to be further scrutinized.

Increasingly users of rehabilitation have complex and composite health issues as physical and mental health conditions commonly co-exist.The four subscale Client-Centred Rehabilitation Questionnaire [CCRQ-is] demonstrated strong reliability for assessing the client-centredness of rehabilitation services for people with different health issues in Iceland.People receiving rehabilitation for mental health reasons seem to find the service to be less client-centred than other rehabilitation service users.The lowest scores on the CCRQ-is were consistently found on the dimension Interaction with significant others.The key role often played by families during and after the rehabilitation process should be recognized.

Drawing on critical disability and universal design perspectives within occupational therapy.

BACKGROUND: Critical perspectives which focus on socio-political influences on occupation have gained increased attention within the occupational therapy profession. Critical disability studies (CDS) question prevailing assumptions about disability and how disabling ideologies and practices are perpetuated in society. Universal Design (UD) is a design approach that aims to operationalise issues of inclusion and justice. AIM: To identify and discuss how the tenets of CDS and UD can contribute to occupational therapy practice and research. METHODS AND RESULTS: Drawing on the writings of leading scholars within CDS, UD and occupational therapy, we demonstrate the intertwined barriers faced by disabled children, youth, and adults who have participated in our studies and provide ideas on how practice can be guided by the tenets of CDS and UD to promote social equity. CONCLUSIONS: Incorporating CDS and UD perspectives in occupational therapy practice and research requires a change in mindset and ways of working. Occupational therapy knowledge needs to be expanded to scrutinise disabling hindrances hidden within social and structural spaces, and implemented in services. We recommend working with disability communities to raise awareness and combat disabling barriers at various level of society, as mandated by policy.

Implications of internalised ableism for the health and wellbeing of disabled young people.

When conceptualising health and wellbeing among disabled people, the experience of internalised ableism must be considered. In this article, we argue that internalised ableism is indeed a health and wellbeing issue that materialises in numerous complex psychological, social and physical consequences. For theoretical grounding, we utilise critical disability studies, feminist theorising about solidarity and disability activists' concept of 'disability justice'. We draw on data from focus-group interviews with disabled young people, comprising ten men and eleven women, with different impairment types. The focus-group discussions revolve around various aspects of their wellbeing and participation in society, and possible and actual threats to the wellbeing of disabled children and young people in general. The analysis reflects various negative effects of internalised ableism on the identity, health and wellbeing of disabled young people. Family support, access to safer spaces and positive peer interactions are factors defining how internalised ableism develops, is maintained or defied. Peer support and solidarity are strong indicators of promoting healing from internalised ableism. We argue that disability scholars need to address the health and wellbeing of disabled people in an ableist world.

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

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.

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. Cultural-historical activity theory is introduced as a beneficial framework for further study and system improvement.

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

PURPOSE: 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.

"I want a normal life like everyone else": Daily life of asylum seekers in Iceland.

AIM: An ever-increasing number of people seek asylum in Iceland. The wait for resolution on application for asylum can take up to three years. During this time participation in daily occupations is disrupted. This study was carried out to gain an understanding of the experience of living as an asylum seeker in Iceland. It explored asylum seekers' opportunities for participation in occupations as well as their overall experiences while waiting for the processing of their application. METHODS: Eleven semi-structured interviews were conducted with nine participants, of whom six were asylum seekers. A constructivist grounded theory approach was applied to categorize and synthesize data. RESULTS: Four major categories emerged that reflected the participants' difficult living conditions, lack of opportunities for participation, lack of belonging, and feelings of powerlessness. The long processing time of their applications was enormously stressful as well as not being in charge of one's life, living conditions, or income. CONCLUSION: The results indicate that the long processing time of application for asylum has deteriorating effects on health. In order to promote asylum seekers' well-being and occupational rights attention needs to be focused on their living conditions and opportunities for participation in meaningful occupations, including work.

Quality of life of adolescents born with extremely low birth weight.

AIM: To explore extremely low birth weight [ELBW] adolescents' self-reported quality of life [QoL] and compare it with control group of same age full-term peers. METHODS: This project is nested within a national follow-up study on the long-term outcome of ELBW infants born in Iceland in 1991-1995. Twenty-nine ELBW adolescents and 30 controls evaluated their QoL using KIDSCREEN-52. To evaluate group differences, Chi-square tests and Mann-Whitney U-tests were conducted. Multivariate logistic regression was used to determine the influence of birth weight on QoL in ten dimensions. RESULTS: No differences were observed between the groups on six of ten KIDSCREEN dimensions. ELBW adolescents reported significantly lower QoL on four dimensions: Physical well-being (OR 3.41; CI, 1.14-10.25), Psychological well-being (OR 7.65; CI, 2.04-28.78), Moods and emotion (OR 5.20; CI, 1.53-17.82), and Self-perception (OR 3.20; CI, 1.05-9.74). CONCLUSION: ELBW adolescents report similar social well-being and participation compared with same age full-term peers. Conversely, they report lower physical and emotional quality of life.

Evaluation of therapy services with the Measure of Processes of Care (MPOC-20): the perspectives of Icelandic parents of children with physical disability.

The aim of this population-based study was to examine how parents of Icelandic children with physical disability view the services of physical, occupational, and speech therapists and how family centered those services are. A secondary aim was to compare the differences of parental perceptions of therapy services based on age, residence, and disabilities. Parents of 88 (46%) children aged 2-18 answered the Measure of Processes of Care-20 (MPOC-20), and six parents participated in a focus group interview. Descriptive data were used to explore central tendency and variability, and comparisons were made using analysis of variance. Overall, the parents found the therapy services respectful, supportive, and coordinated; they felt enabled in their parent role and worked mostly in partnership with the professionals. Nevertheless, parents perceived they received insufficient information from therapists. Parents reported a wish for more cooperation, teamwork, and a key worker. Findings indicate that the MPOC is reliable and easy to use within the Icelandic context.

Parent perspectives of therapy services for their children with physical disabilities.

BACKGROUND: Children who have physical disabilities typically attend occupational and physical therapy services on a regular basis. The importance of being family centred when providing services to children with a disability has been highlighted in recent years. Thus, it was considered important to gather the opinions of parents towards the services their child receives. AIM: To explore the perspectives of parents of children with physical disabilities to occupational and physical therapy services provided to their child. METHOD: Open interviews were conducted with 17 parents (14 mothers and three fathers) of children aged 7-13, selected through a purposeful sample. Data analysis was based on an inductive approach. RESULTS: Nine categories emerged and were organized under three main headings: The role of the therapist, service location and arrangements, and characteristics of good service. Although several positive remarks were made, many parents in this study were poorly informed of intervention goals and what took place during therapy sessions. Most parents wished for mutual respect, joint decision-making in planning intervention, and collaboration with the therapy services. The aspiration for active but manageable roles that did not demand a burdensome amount of the parents' time and energy was evinced. The parents became increasingly critical of the services, as their children grew older. They placed emphasis on services being offered in their local community, and that more specialized service should be centralized, especially for the children with the most complex needs. CONCLUSIONS: The results reflect the importance of the needs and wants of the parents and children being respected. Thus, parents should play an active role in defining priorities and strategies for implementation. The results also indicate that therapists need to put more thought into the conditions and environment of the child instead of focusing solely on underlying issues connected to their impairments.

Participation of students with physical disabilities in the school environment.

OBJECTIVE: We investigated the factors that facilitate or hinder school participation of students with physical disabilities and explored the interaction of those factors. METHOD: The study used a mixed-methods design that used qualitative and quantitative data. Qualitative data were gathered on 49 participants: 14 students, 17 parents, and 18 teachers. Data analysis was based on grounded-theory procedures. Quantitative data were gathered on 32 students using the School Function Assessment. RESULTS: The characteristics of each school setting influenced students' participation. Some settings presented more challenges than others, particularly those with open spaces and limited structures such as the school playground and field trips. Possibilities of student participation decreased with increasing numbers of risk factors, but the interaction between factors was equally important. CONCLUSION: To promote school participation of students with disabilities, occupational therapists should consider a confluence of child, environmental, and task factors rather than focusing on individual aspects.

Performance on extremely low birthweight children at 5 years of age on the Miller Assessment for Preschoolers.

The purpose of this geographically defined national study was to evaluate the performance of extremely low birthweight children (ELBW < 1000 g) born in Iceland in 1991-1995 and compare to a cohort of matched control children born full term. The Miller Assessment for Preschoolers (MAP) was used to provide an overall profile of 32 ELBW children and 55 control children at 5 years of age. The results indicated that score patterns on the MAP between ELBW and normal birthweigt children differ. The differences were significant on the Total Score, and the Foundations, Coordination, and Complex-Tasks Indices. This study found that the ELBW group had specific problems in basic motor tasks, coordination, and fine motor skills. The results validate the need for early assessment, regular follow up, and consultation to promote optimal task performance and social participation of children born prematurely.