The perspective of emerging adults with Down syndrome - On quality of life and well-being.

This study explored the thoughts of emerging adults with Down syndrome on quality of life and subjective well-being. Eight 22-year-olds participated in interviews. Data was analysed with content analysis. Four themes were revealed: Work based on interest and capability, having an active and social leisure life, a safe place to live and the use of information and communication technology. Two context related patterns were identified showing that quality of life and subjective well-being were related to individualised support to enhance independency in work, social leisure and place of living. Knowledge of their perception of independency and their awareness of needing customised help and support is valuable. This study supports the proposed emerging Quality of Life Supports Paradigm in the field of intellectual disabilities, which integrates key concepts of quality of life and supports.

Exploring two subdimensions of participation, involvement and engagement: A scoping review.

BACKGROUND: The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. METHODS: In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. RESULTS: Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. CONCLUSIONS: This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.

Testing ActiveYou II: Applying Cognitive Interviews in Improving Item Quality and Applicability of a Web-Based, Self-Report Instrument on Participation in Children with Disabilities.

BACKGROUND: Children and youth with disabilities participate less in leisure activities than their nondisabled peers. Increasing participation is a primary goal of rehabilitation interventions. However, valid measures that include the individual's perspectives and facilitating and hindering factors for participation are lacking in the Norwegian setting. In this study, ActiveYou II, a self-report, web-based instrument under development, was tested to obtain item quality and applicability. METHODS: Nine children with disabilities participated in cognitive interviews, testing a first set of ActiveYou II items. The verbal probe method for cognitive interviews was applied. RESULTS: The children's comprehension and responses through cognitive interviews improved the applicability and item quality of ActiveYou II. Item adjustments were made to the wording of the questions and response alternatives, and the number of response alternatives were decreased where appropriate. CONCLUSIONS: The use of cognitive interviews with children before performing further psychometric testing has been very useful in the development process of ActiveYou II. Adjustments of the questions and response alternatives were made accordingly.

Perceived facilitators and barriers for participation in leisure activities in children with disabilities: Perspectives of children, parents and professionals.

BACKGROUND: There is limited knowledge about facilitators and barriers to leisure activity participation for children with disabilities in Norway, which is needed to improve rehabilitation interventions. AIM: This study aims to explore the main facilitators and barriers for participation in leisure activities for children and youth with disabilities in Norway. METHODS: Semi-structured group interviews with 31 parents, 20 healthcare professionals, and nine children with disabilities were conducted. Qualitative content analysis with thematic coding was used, and the model of factors affecting the participation of children with disabilities developed by King et al. was applied for further deductive analysis. RESULTS: Child factors, as viewed by parents and professionals, worked primarily as barriers and tended to increase with the child's age. The children themselves focussed on their own preferences, friendship and enjoyment as their main facilitators for participation. Most environmental and family factors worked both as facilitators and as barriers, with parental support as the most important facilitator. Differences between urban and rural areas in the availability and accessibility of activities were reported. CONCLUSION AND SIGNIFICANCE: Knowledge from this study is important for the improvement of rehabilitation interventions that aim to increase participation in leisure activities for children and youth with disabilities.

Characteristics of community-based occupational therapy: Results of a norwegian survey.

Background: Ongoing changes in healthcare delivery systems in Norway increasingly require community-based services, and the changes will likely affect the working conditions and opportunities for occupational therapists.Aim: To characterize occupational therapy in community-based practice in Norway.Material and methods: A cross-sectional, descriptive survey design was applied using a questionnaire related to personal and organizational characteristics. Participants (n = 561) were recruited among community-working occupational therapists in Norway registered as members of Ergoterapeutene. Data were analyzed with descriptive statistics.Results: The majority of the participants was female and had an average of 16.5 years of professional experience. They reported to spend about half of their working hours on direct work with clients. For many, work with assistive technology was a main task, accounting for approximately half their working hours. Only a small proportion worked in municipalities that had merged with others, but for a larger proportion (27%) a merger had been decided and was in preparation.Conclusion: This study established some basic information regarding Norwegian community-based occupational therapy and the municipalities where occupational therapists work.Significance: With this study serving as a baseline, we may be able to track how changes will affect community-based occupational therapy practice in the near future.

Friendships and patterns of social leisure participation among Norwegian adolescents with Down syndrome.

BACKGROUND: A first generation of adolescents with Down syndrome have grown up in Norway's inclusive society. This study explored their friendships and social leisure participation, mainly as it is reflected through their subjective experience. METHOD: The analysis is based on qualitative interviews and observations of 22 teens aged 17 years. RESULTS: Generally, the adolescents described their social life as rich and varied, occurring in several contexts with different companions. Their thoughts of friendships were quite extensive, also including less close relationships. Three main contextual patterns of social participation were revealed: (a) the family at home pattern, (b) the peer group pattern and (c) the arranged company pattern. The relationship between the national policy on social inclusion and these findings is discussed. CONCLUSION: To understand the barriers and opportunities in the social life of Norwegian adolescents with Down syndrome, it is essential to acknowledge the extent of their experiences with friendship and the characteristics of their social participation patterns.

Involvement in Research and Development Projects Among Community-working Occupational Therapists in Norway.

A cross-sectional descriptive survey was conducted (n = 561). Almost half of the participants took part in research and development projects. Being involved in research and development was associated with lower age, having further education, and higher levels of work experience. The current and prioritized research topics were reablement and assistive technology. The study implies that community-working occupational therapists are largely involved in research and development, or eager to become involved.

Community-based occupational therapy in Norway: Content, dilemmas, and priorities.

BACKGROUND: Profound changes in municipal health services, are calling for new models for community-based occupational therapy services. OBJECTIVE: The aim of the study is to explore how Norwegian occupational therapists position themselves in relation to the tasks delivered. METHOD: Focus group interviews were conducted with ten community-based occupational therapists. Systematic text condensation was then used in the data analysis. RESULTS: Norwegian occupational therapists description of professional practices can be constructed into four ideal types; being 'the all-rounder', 'the provider of assistive device', 'the fire extinguisher', or 'the innovator'. The ideal types can help us understand more of the content and dilemmas that community-based occupational therapists encountered in their daily practice, and the priorities they make during these encounters. CONCLUSIONS AND SIGNIFICANCE: Community-based occupational therapists positioned themselves in different ways, and some of these positions were considered to be more favourable than others. The therapists struggled between 'traditional' occupational therapy tasks and new ways of delivering occupational therapy services. The study reveals similarities and differences between rural and urban occupational therapy practice. The ideal types can help community-based therapists to reflect on their own practice and empower them to be more in keeping with the OT's objectives and preferences.

Perceived Influence on Service Goals Among Community-Working Occupational Therapists in Norway.

AIM: This study aimed to assess the perceived influence that community-working occupational therapists in Norway have on the service goals of their respective organizations. In addition, we aimed to assess sociodemographic and work-related factors associated with the perceived level of influence. METHODS: A cross-sectional survey was distributed to occupational therapists in community-based services in Norway (n = 1767), to which 561 (32%) responded. By multivariate regression analysis, factors associated with "self-perceived influence" were assessed. RESULTS: After controlling for all variables, having a master's degree ( ß = 0.09, P < .05), being involved in a research and development project ( ß = 0.25, P < .001), and not working with assistive technology ( ß = -0.19, P < .001) were associated with higher perceived influence. CONCLUSIONS: For occupational therapy to reach its potential in Norwegian community-based health care, the profession needs to establish itself more firmly and increase its influence within the health care services. To do so, it appears important to support occupational therapists' educational aspirations, their participation in research and development projects, and their autonomous role in relation to the provision of assistive technology equipment.

The profile of social functioning in children with Down syndrome.

BACKGROUND: Practitioners and researchers have asserted for decades that social functioning is a strength in children with Down syndrome (DS). Nevertheless, some studies have concluded that children with DS may be at greater risk of impaired social functioning compared to typically developing controls. This cross-sectional study explores the profile of social functioning (social capabilities and social problems) in six-year-old children with DS, compares it with that of typically developing children and reveals possible differences in predictors between groups. METHOD: Parental reports and clinical tests were utilized. RESULTS: The children with DS had generally weaker social capabilities compared to nonverbal mental age-matched controls, but no significant differences were found for social interactive play, community functioning and prosocial behaviour. No significant differences in predictors for social capabilities between the groups were found. The children with DS had more social problems than the typically developing controls with a similar chronological age and those with a similar nonverbal mental age, but no significant differences in emotional symptoms were found between the children with DS and either comparison group. Vocabulary was a more important predictor of social problems in the children with DS than in the typically developing control groups. CONCLUSION: Interventions for children with DS should strongly focus on integrating vocabulary skills and social functioning starting at an early age. Implications for Rehabilitation Children with Down syndrome need help and support in social functioning. Systematic training to optimize social capabilities and to prevent social problems should be prioritized. Structured and explicit learning of words important for social interaction with peers and for conflict solutions should be emphasized. Integrated interventions focusing on social functioning and vocabulary should begin in preschool to prepare children for participation in mainstream education.

Normative Scores for the Pediatric Evaluation of Disability Inventory in Norway.

AIM: The aim of this study was to develop clinically useful normative scores for the Pediatric Evaluation of Disability Inventory (PEDI) for children in Norway, and provide information on the relative difficulty level of individual test items. METHODS: Using PEDI protocols from 224 Norwegian children without disability, we computed and scrutinized the normative scores for their representativeness, and compared them with scores from 313 children in the original US PEDI sample. Item functioning was compared using Rasch model-based differential item functioning (DIF) analyses and comparisons of item mastery. RESULTS: The normative scores yielded consistent and regular results. The mean scores for each age group in the Norwegian sample were lower than in their US counterparts, and age mean plots ran parallel. However, this difference may be misleading for clinical use, as item comparisons revealed differences in both higher and lower directions between the samples for about a third of all items. Estimates of relative item difficulty for children in Norway were developed. CONCLUSIONS: Identifying potential differences when using an instrument in another culture is important to avoid a risk of over- or underestimating a child's capability. In addition, item response patterns are required to make national normative scores clinically useful.

Children's perspective on their right to participate in decision-making according to the United Nations Convention on the Rights of the Child article 12.

ABSTRACT Aims: According to the United Nations Convention on the Rights of the Child article 12, children have a right to express their views. However, knowledge on how children with a disability perceive this right and the extent to which they would like to access this right is unclear. The aim of this study was to describe and capture the meaning of children's perspective on their right to participate in decision-making together with the children's lived experiences in pediatric rehabilitation. Methods: A phenomenological hermeneutical research design was applied for gathering the thoughts and lived experiences of seven children with different disabilities through individual interviews and observations. Results: The children expressed satisfaction with participation being limited to less important decisions. This may be understood as lack of experience with participation in decision-making or an inherent wish of becoming like peers and therefore viewing therapists as experts of a normalization process. Conclusions: Health care professionals should consider informing the child of the possibility of decision-making and for negotiating power-sharing and responsibility concerning decisions in pediatric rehabilitation.

Actual leisure participation of Norwegian adolescents with Down syndrome.

This article reports the actual participation in leisure activities by a sample of Norwegian adolescents with Down syndrome aged 14. Representing a first generation to grow up in a relatively inclusive context, they live with their families, attend mainstream schools, and are part of common community life. Leisure information was obtained in individual, structured parent interviews, and added to existing longitudinal data from a project following the sample. Generally, the leisure activity may be viewed as varying along a continuum-reaching from formal, organized, and assisted activity participation outside home, to informal, self-organized, and independent participation at home. Formal leisure activities were either organized "for all" or "adapted for disabled." The adolescents' leisure appears as active and social. However, social participation largely involved parents and family, while socializing with other adolescents mainly took place within formal activities adapted for disabled. Clearly, formal and informal activities provide rather different opportunities for social encounters and assistance.

Functional performance characteristics associated with postponing elementary school entry among children with Down syndrome.

OBJECTIVES: This study investigated the relation between functional performance skills of children with Down syndrome and the age of entry into mainstream elementary education. METHOD: In a cross-sectional study of 70% of the 7-year-old children with Down syndrome in Norway (N = 43), we measured functional performance using the Pediatric Evaluation of Disability Inventory (PEDI). The study was a follow-up of a previous study of the same children at age 5 assessed using the same instrument. Data from both studies were used in the analysis. RESULTS: Forty percent of the sample of children with Down syndrome in Norway had entered elementary school after a 1-year postponement (i.e., at age 7). The functional performance skills of the children, as measured using the PEDI, were significantly lower at both age 5 and age 7 in self-care and social function compared with children with Down syndrome who entered elementary school at the usual time (i.e., at age 6). The main characteristics associated with postponed elementary school entry were found in communication skills and bladder and bowel management. CONCLUSION: A certain level of development and independence seems to be required for a child with Down syndrome to be viewed as ready to enter elementary school, and perceptions of readiness for school may be culturally dependent. In addition to the well-described challenges in language and communication skills, being viewed as ready for school includes having stopped using diapers, a topic not previously mentioned as a factor in postponing elementary school entry for children with Down syndrome. Awareness of culturally influenced performance skills may give direction to parents and professionals in targeting areas in the preschool years that might help promote these children's readiness for school.

Functional performance in children with Down syndrome.

OBJECTIVES: The purpose of this study was to describe home and community functional performance in 5-year-old children with Down syndrome. METHOD: In a cross-sectional study of 5-year-old children with Down syndrome in Norway (N=43), functional performance was measured with the Norwegian translation of the Pediatric Evaluation of Disability Inventory (PEDI). Additional descriptive information related to health, disabilities, and function was also gathered. RESULTS: The children showed a wide range of functional performance. Performance of self-care activities appeared most delayed on activities that required fine motor skills. Children appeared less affected in basic functional mobility skills. Parents' identified their main concerns as language functioning and, for the children not yet toilet trained, the management of bladder and bowel control in relation to starting school. CONCLUSION: The results provide baseline information regarding typical levels of functional performance in children with Down syndrome at 5 years of age. However, the broad range of functional performance across children indicates a need for caution in generalizing the results to an individual child.