Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland.

BACKGROUND: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. OBJECTIVE: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland. METHOD: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. RESULTS: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. CONCLUSIONS: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.

Parents' Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder-A Descriptive Population-Based Study from Switzerland.

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD.

Diversity, migration routes, and worldwide population genetic structure of Lecanosticta acicola, the causal agent of brown spot needle blight.

Lecanosticta acicola is a pine needle pathogen causing brown spot needle blight that results in premature needle shedding with considerable damage described in North America, Europe, and Asia. Microsatellite and mating type markers were used to study the population genetics, migration history, and reproduction mode of the pathogen, based on a collection of 650 isolates from 27 countries and 26 hosts across the range of L. acicola. The presence of L. acicola in Georgia was confirmed in this study. Migration analyses indicate there have been several introduction events from North America into Europe. However, some of the source populations still appear to remain unknown. The populations in Croatia and western Asia appear to originate from genetically similar populations in North America. Intercontinental movement of the pathogen was reflected in an identical haplotype occurring on two continents, in North America (Canada) and Europe (Germany). Several shared haplotypes between European populations further suggests more local pathogen movement between countries. Moreover, migration analyses indicate that the populations in northern Europe originate from more established populations in central Europe. Overall, the highest genetic diversity was observed in south-eastern USA. In Europe, the highest diversity was observed in France, where the presence of both known pathogen lineages was recorded. Less than half of the observed populations contained mating types in equal proportions. Although there is evidence of some sexual reproduction taking place, the pathogen spreads predominantly asexually and through anthropogenic activity.

First Report of Diplodia fraxini and Diplodia subglobosa Causing Canker and Dieback of Fraxinus excelsior in Slovenia.

In recent decades the vitality and productivity of European ash trees in Slovenia have been reduced by the onset of canker and dieback disease symptoms on young and old trees, identified primarily as ash dieback caused by Hymenoscyphus fraxineus. Given the limited information available about the etiology of this emerging disease, a study was carried out to isolate, identify, and characterize the fungal species involved in the observed ash symptoms. Field surveys were conducted in five forest sites where 50 symptomatic branch samples were collected. All samples were inspected and used for fungal isolation. Based on morphology, colony appearance, and DNA sequence data of the internal transcribed spacer region, 125 fungal colonies belonging to five species were isolated and identified. Only a few symptomatic ash samples yielded colonies of H. fraxineus, whereas Botryosphaeriaceae species were isolated with a high frequency, with Diplodia fraxini as the dominant species. A pathogenicity test proved that all isolated species were pathogenic on European ash, causing bark lesions and wood discoloration. All Botryosphaeriaceae species isolated in this study are reported for the first time on European ash in Slovenia.

Worldwide Genetic Structure Elucidates the Eurasian Origin and Invasion Pathways of Dothistroma septosporum, Causal Agent of Dothistroma Needle Blight.

Dothistroma septosporum, the primary causal agent of Dothistroma needle blight, is one of the most significant foliar pathogens of pine worldwide. Its wide host and environmental ranges have led to its global success as a pathogen and severe economic damage to pine forests in many regions. This comprehensive global population study elucidated the historical migration pathways of the pathogen to reveal the Eurasian origin of the fungus. When over 3800 isolates were examined, three major population clusters were revealed: North America, Western Europe, and Eastern Europe, with distinct subclusters in the highly diverse Eastern European cluster. Modeling of historical scenarios using approximate Bayesian computation revealed the North American cluster was derived from an ancestral population in Eurasia. The Northeastern European subcluster was shown to be ancestral to all other European clusters and subclusters. The Turkish subcluster diverged first, followed by the Central European subcluster, then the Western European cluster, which has subsequently spread to much of the Southern Hemisphere. All clusters and subclusters contained both mating-types of the fungus, indicating the potential for sexual reproduction, although asexual reproduction remained the primary mode of reproduction. The study strongly suggests the native range of D. septosporum to be in Eastern Europe (i.e., the Baltic and Western Russia) and Western Asia.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich.

AIM: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. METHOD: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15-21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. RESULT: The presence of two main themes seemed necessary to facilitate participation outside of home and school: "environmental prerequisites to attend activities", which consists of five subthemes, such as "the company of trusted persons" and "the provision of knowledge and information", and "social interchange and engagement", which consists of three subthemes and describes how actual involvement can be supported. CONCLUSION: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.IMPLICATIONS FOR REHABILITATIONAdolescents with autism spectrum disorder perceive every kind of participation outside of home and school as social.We recommend using the company of trusted persons to encourage adolescents with autism spectrum disorder to actively participate outside of home and school.Rehabilitation professionals should promote environment-based approaches to achieve participation of adolescents with autism spectrum disorder.Rehabilitation professionals should actively approach, acknowledge and gently guide adolescents with autism spectrum disorder to support engagement in participation.

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries.

BACKGROUND: Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland. METHODS: Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence. RESULTS: Results show adaptations mainly focused on experiential and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY to reflect those typical in German speaking countries. Conceptual equivalence mainly addressed aspects of "involvement" and "environment" of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. CONCLUSIONS: This study presents a cross-cultural translation and adaptation process to develop a German version of the PEM-CY that is suitable for Germany, Austria and Switzerland. Using a modified cultural adaptation process, a culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

AIM: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD: Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS: Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION: Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS: Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

The first record of two non-native ambrosia beetles in Slovenia: Ambrosiodmus rubricollis (Eichhoff, 1875) and Ambrosiophilus atratus (Eichhoff, 1875) (Coleoptera: Curculionidae, Scolytinae).

In September 2017, during the monitoring of the non-native ambrosia beetle Xylosandrus germanus (Blandford, 1894), one specimen of an unknown ambrosia bark beetle species was collected in Slovenia. The specimen was trapped in an ethanol-baited trap located in Klavze (46° 09´ 39˝ N, 13° 48´ 7˝ E), in the western part of Slovenia. The most characteristic feature distinguishing the specimen from other known ambrosia beetle species occurring in Slovenia was the asperities that covered the entire surface of the pronotum. Based on the scientific literature concerning the non-native bark and ambrosia beetles in Europe (Kirkendall Faccoli 2010) and illustrated identification keys (Rabaglia et al. 2006; Faccoli et al. 2009), we identified the beetle by its morphological characteristics as Ambrosiodmus rubricollis (Eichhoff, 1875). As a result of this find, a specific monitoring was set up in 2018 in Slovenia with the aim to improve the knowledge about occurrence and distribution of A. rubricollis in this country.

Transferability of PCR-based diagnostic protocols: An international collaborative case study assessing protocols targeting the quarantine pine pathogen Fusarium circinatum.

Fusarium circinatum is a harmful pathogenic fungus mostly attacking Pinus species and also Pseudotsuga menziesii, causing cankers in trees of all ages, damping-off in seedlings, and mortality in cuttings and mother plants for clonal production. This fungus is listed as a quarantine pest in several parts of the world and the trade of potentially contaminated pine material such as cuttings, seedlings or seeds is restricted in order to prevent its spread to disease-free areas. Inspection of plant material often relies on DNA testing and several conventional or real-time PCR based tests targeting F. circinatum are available in the literature. In this work, an international collaborative study joined 23 partners to assess the transferability and the performance of nine molecular protocols, using a wide panel of DNA from 71 representative strains of F. circinatum and related Fusarium species. Diagnostic sensitivity, specificity and accuracy of the nine protocols all reached values >80%, and the diagnostic specificity was the only parameter differing significantly between protocols. The rates of false positives and of false negatives were computed and only the false positive rates differed significantly, ranging from 3.0% to 17.3%. The difference between protocols for some of the performance values were mainly due to cross-reactions with DNA from non-target species, which were either not tested or documented in the original articles. Considering that participating laboratories were free to use their own reagents and equipment, this study demonstrated that the diagnostic protocols for F. circinatum were not easily transferable to end-users. More generally, our results suggest that the use of protocols using conventional or real-time PCR outside their initial development and validation conditions should require careful characterization of the performance data prior to use under modified conditions (i.e. reagents and equipment). Suggestions to improve the transfer are proposed.

Supporting and hindering environments for participation of adolescents diagnosed with autism spectrum disorder: A scoping review.

The influence of a person's environment and its modifying potential on participation is well recognized for most childhood disabilities, but scarcely studied for adolescents with autism spectrum disorder (ASD). A scoping review was conducted, the aim of which was to map the existing literature about supporting and hindering environments for the participation of adolescents with ASD. Sources of scientific evidence were searched for in four databases. Inclusion criteria were the perspectives of adolescents between 12 and 21, families, peers, or significant others; ecologic validity; and a clear connection between environment and participation. The publication dates ranged from 2001 to 2014 and partly up to 2018. The International Classification of Functioning, Disability and Health (ICF) served as the guiding framework for inclusion/exclusion during the selection process. Thematic analysis was performed by five independent reviewers. Results were additionally validated by stakeholders. This scoping review identified 5528 articles, and finally included 31 studies. Two main themes were found: "providing security" indicates how the environment, and specifically the parental, physical, and informational environments, have a securing or intimidating effect. The second theme, "helping to connect", indicates which environments support or hinder social relationships or social activities, and hence participation. An additional third main theme, "tension in participation", relates to ambiguities that seem essential to understand participation or isolation of adolescents with ASD. Results show that participation is a value-laden concept. This research widens the field of dealing with adolescents with ASD, as it directs attention towards the responsibility of the environment regarding participation.

Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.

BACKGROUND: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. OBJECTIVE: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. METHODS: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. FINDINGS: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. CONCLUSION: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community: a qualitative diary study.

BACKGROUND: Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents' own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review. METHODS: A qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework. RESULTS: Analysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents' actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented. CONCLUSIONS: Parents' actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.

The clinical utility of the Canadian Occupational Performance Measure in vocational rehabilitation: A qualitative study among occupational therapists in Slovenia.

BACKGROUND: Few studies exist on the clinical utility of the Canadian Occupational Performance Measure (COPM) in vocational rehabilitation. OBJECTIVE: The aim of this study was to explore how Slovenian occupational therapists working in vocational rehabilitation, perceived the usefulness of the COPM in their everyday practice. METHODS: A qualitative study using two focus group discussions was conducted. The meaning condensation method was applied to analyze the data. RESULTS: Analysis revealed the following key themes: (1) the COPM facilitates collaboration with the client; (2) the COPM is a source of evidence and empowerment for occupational therapists; (3) the challenges that arise when using the COPM; (4) the use of COPM requires training; and (5) using the COPM results and understanding their meaning. CONCLUSIONS: The study reveals new insights into using the COPM results in occupational therapy, especially into the contextual factors that influence the meaning and importance of work for clients in vocational rehabilitation.

The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community.

PURPOSE: The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. METHOD: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. RESULTS: Analysis revealed three super-ordinate themes: "Parents' experiences and concerns about systems, laws and regulations", "Parents' experiences and thoughts about physical and/or social environment" and "Parents' experiences and feelings of finding and/or enabling an activity". Parents' often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. CONCLUSIONS: In-depth exploration and understanding of parents' articulated matters must be shared and taken seriously by policymakers and service providers. Parents' knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability. Implications for Rehabilitation To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child's participation ought to be acknowledged. Active use of parents' experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation. Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

Application of the enabling occupation II guidelines in a non-Canadian context.

BACKGROUND: The Canadian Enabling Occupation II guidelines contain theory and examples of how to apply client-centredness in occupation-based practice. Little information is available about the feasibility of the guidelines in other contexts. For 18 months, nine Dutch occupational therapists participated in a community of practice to explore, together with three researchers, their experiences with the application of the Enabling Occupation II guidelines. PURPOSE: To understand the experiences of Dutch occupational therapists with the application of the Enabling Occupation II guidelines. METHOD: A qualitative study using four focus group discussions and content analysis. FINDINGS: Four themes emerged: (1) an indication that the guidelines of Enabling Occupation II are in line with values and norms of Dutch occupational therapists, (2) the meaningfulness of an intensive process of studying, discussing, applying and reflecting, (3) the struggles faced by the occupational therapists with translating English and getting a grip on concepts and (4) the challenges to implementing the guidelines in practice. IMPLICATIONS: Findings indicate that Enabling Occupation II embody values and norms of Dutch occupational therapists. They experience many benefits in their doing, thinking and being when applying the guidelines in practice. Struggles with reading English, getting a grip on concepts and theories, and difficulties in handling obstacles indicate that the application of the guidelines takes effort. An understanding of the philosophy, application, and reflection on professional identity may be prerequisites for appraising the feasibility of adoption of client-centred guidelines cross-culturally.

Social participation: redesign of education, research, and practice in occupational therapy. Previously published in Scandinavian Journal of Occupational Therapy 2013; 20: 2-8.

There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

Participation and social participation: are they distinct concepts?

INTRODUCTION: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available. AIM: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions. DISCUSSION: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement. CONCLUSION: Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

Social participation: redesign of education, research, and practice in occupational therapy*.

There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

Parents' actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review.

BACKGROUND: Pediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their child's participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their child's participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature. METHODS: Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings. RESULTS: Fourteen relevant articles revealed two major themes: 'parents enable and support performance of meaningful activities' and 'parents enable, change and use the environment'. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents. CONCLUSIONS: This study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their child's participation in daily life.