Engaging with immigrant students' voices in the school environment: an analysis of policy documents through school websites.

BACKGROUND: For students to feel happy and supported in school, it is important that their views are taken seriously and integrated into school policies. However, limited information is available how the voices of immigrant students are considered in European school contexts. This study generated evidence from written documents to ascertain how student voice practices are described at school websites. METHODS: Between 2 March and 8 April 2021, we reviewed the policy documents publicly available on school websites. The schools located in areas of high immigration in six European countries: Austria, England, Finland, Germany, Romania, and Switzerland. The READ approach was used to guide the steps in the document analysis in the context of policy studies (1) ready the materials, 2) data extraction, 3) data analysis, 4) distil the findings). A combination of qualitative and quantitative approaches with descriptive statistics (n, %, Mean, SD, range) was used for analysis. RESULTS: A total of 412 documents (305 schools) were extracted. Based on reviewing school websites, reviewers'strongly agreed' in seven documents (2%) that information related to seeking student voices could be easily found. On the contrary, in 247 documents (60%), reviewers strongly indicated that information related to seeking student voices was missing. No clear characteristics could be specified to identify those schools were hearing students' voices is well documented. The most common documents including statements related to student voice were anti-bullying or violence prevention strategies (75/412) and mission statements (72/412). CONCLUSIONS: Our document analysis based on publicly accessible school websites suggest that student voices are less frequently described in school written policy documents. Our findings provide a baseline to further monitor activities, not only at school level but also to any governmental and local authorities whose intention is to serve the public and openly share their values and practices with community members. A deeper understanding is further needed about how listening to student voices is realized in daily school practices.

Outcomes and Mechanisms of Change of the Strengthening Families Program in a Clinical Sample of Children and Their Families in Austria.

Family context and parenting behavior have the greatest influence on children's mental health and well-being, and interventions that take the whole family system into account are promising. This study aims to evaluate the outcomes, i.e., family strength, parenting behavior, and child behavior, of the Strengthening Families Program (SFP), developed by Kumpfer which was implemented in an outpatient clinic of a community-based non-governmental organization in Austria between 2012 and 2018. Furthermore, the program's mechanism of change as formulated by the program authors (i.e., to what extent parenting behavior mediates the relationship between family strength and child behavior) was tested in this clinical sample. Instruments measuring family strength, parenting behavior, and child behavior were administered before, immediately after, and 6 months after participation in the SFP. To test the mechanisms of change, a half-longitudinal model was applied with two measurement points (before and after). A total of 62 families (50 boys, 24 girls, and 69 parents) participated in the culturally adapted SFP. Regarding the outcomes of the program, all variables yielded significant improvement in all variables. With respect to the mechanism of change, no significant association between the variables could be found. Implications for the implementation of the SFP in a clinical population and how further adaptation of the program could enhance the adherence of this target group are discussed.

Measuring broader wellbeing in mental health services: validity of the German language OxCAP-MH capability instrument.

PURPOSE: The OxCAP-MH capabilities questionnaire was developed and validated in the UK for outcome measurement in mental health clinical studies. Its broader wellbeing construct or validity in routine mental health services so far has not been assessed. The objectives were to investigate the extent the OxCAP-MH measures broader wellbeing compared to the EQ-5D-5L and to test psychometric properties of the German language OxCAP-MH in routine mental health services in Austria. METHODS: Study sample consisted of patients in socio-psychiatric services (n = 159) assessed at baseline and 6-month follow-up. Underlying factors associated with quality-of-life/wellbeing concepts measured by the OxCAP-MH and EQ-5D-5L were identified in exploratory factor analysis (EFA). Responsiveness was assessed using anchor questionnaires and standardised response mean (SRM). For discriminant validity, subgroups of respondents were compared using t test and one-way ANOVA. Test-retest analysis was assessed for a period of maximum 30 days from the baseline assessment with intra-class correlation coefficient (ICC). RESULTS: EFA identified a two-factor structure. All EQ-5D-5L items and seven OxCAP-MH items loaded on one factor and nine remaining OxCAP-MH items loaded on a separate factor. Responsiveness was found for patients who improved in anchor questionnaire scores with large or moderate SRM statistics. OxCAP-MH discriminated between various groups in univariable and multivariable analyses. Reliability of the German language OxCAP-MH was confirmed by ICC of 0.80. CONCLUSIONS: Besides providing evidence that the OxCAP-MH measures broader wellbeing constructs beyond traditional health-related quality of life, the study also confirms the validity of the instrument for implementation in routine evaluation of mental health services.

Cultural and linguistic transferability of the multi-dimensional OxCAP-MH capability instrument for outcome measurement in mental health: the German language version.

BACKGROUND: Mental health conditions affect aspects of people's lives that are often not captured in common health-related outcome measures. The OxCAP-MH self-reported, quality of life questionnaire based on Sen's capability approach was developed in the UK to overcome these limitations. The aim of this study was to develop a linguistically and culturally valid German version of the questionnaire. METHODS: Following forward and back translations, the wording underwent cultural and linguistic validation with input from a sample of 12 native German speaking mental health patients in Austria in 2015. Qualitative feedback from patients and carers was obtained via interviews and focus group meetings. Feedback from mental health researchers from Germany was incorporated to account for cross-country differences. RESULTS: No significant item modifications were necessary. However, changes due to ambiguous wordings, possibilities for differential interpretations, politically unacceptable expressions, cross-country language differences and differences in political and social systems, were needed. The study confirmed that all questions are relevant and understandable for people with mental health conditions in a German speaking setting and transferability of the questionnaire from English to German speaking countries is feasible. CONCLUSIONS: Professional translation is necessary for the linguistic accuracy of different language versions of patient-reported outcome measures but does not guarantee linguistic and cultural validity and cross-country transferability. Additional context-specific piloting is essential. The time and resources needed to achieve valid multi-lingual versions should not be underestimated. Further research is ongoing to confirm the psychometric properties of the German version.

Alternating hemiplegia of childhood: metabolic studies in the largest European series of patients.

Alternating hemiplegia of childhood (AHC) is a rare disorder with diagnosis based on clinical criteria, as no laboratory, neuroradiological or genetic markers are currently available. The pathogenic mechanisms are still an enigma. Some hypotheses have been proposed such as hemiplegic migraine variant, epileptic mechanism, channelopathy and mitochondrial disorder, but none of these has been confirmed. Our aim was to analyze the results of metabolic studies performed on a series of 157 European patients who fulfilled diagnostic criteria for AHC. We tried to find a common metabolic abnormality, related with AHC. We did not find significant abnormalities in basic metabolic screening, at different ages. Neurotransmitters in cerebrospinal fluid (n = 26) were normal in all of the patients. Mitochondrial respiratory chain enzyme activities were analyzed in 19 muscle biopsies; in 4 cases, different MRC enzyme deficiencies were demonstrated, ranging from mild-unspecific deficiencies to more profound and probably primary defects. Although we did not find specific metabolic markers in our series, some metabolic disorders such as pyruvate dehydrogenase deficiency, MELAS, cerebral glucose transporter defect and neurotransmitter deficiency can exhibit symptoms similar to those of AHC and need to be ruled out before a diagnosis of AHC can be established. Further studies including high-throughput diagnostic technologies seem necessary to elucidate the etiology of this severe and enigmatic disorder.

Evidence of a non-progressive course of alternating hemiplegia of childhood: study of a large cohort of children and adults.

Alternating hemiplegia of childhood is a neurological disorder characterized by episodes of hemiplegia, various non-epileptic paroxysmal events and global neurological impairment. Characterization of the evolution and outcome into adulthood has not been sufficiently investigated. The goal of this study was to elucidate the natural history of alternating hemiplegia within a large cohort of 157 patients, as part of the European Network for Research on Alternating Hemiplegia project. A questionnaire was formulated to determine the severity of both paroxysmal and global neurological impairment and address progression of the disorder by allocating data to specific age epochs up to and over 24 years of age. Patients in early age groups were consistently present in subsequent later age groups and for each patient, data were collected for each corresponding age epoch. The study was based on predominantly retrospective and, for a period of 2 years, prospective data. At inclusion, patients were aged from 9 months to 52 years. The median age at diagnosis was 20 months. All patients experienced hemiplegic attacks; 86.5% reported episodes of bilateral weakness, 88% dystonic attacks, 53% epileptic seizures, 72% developed chorea and/or dystonia and 92% mental retardation. When data over the course of the illness were examined for the whole cohort, the severity of symptoms did not appear to change, with the exception of abnormal ocular movements and hypotonia that regressed, but did not disappear into adulthood (from 86 to 36% and 76 to 36%, respectively). No statistically significant correlation between a history of severe paroxysmal hemiplegic/dystonic episodes and a worse neurological outcome was identified. Seven patients died, some of whom experienced severe plegic attacks or epileptic seizures at the time of death. History of severe plegic/dystonic attacks was not found to be an aggravating factor for deceased patients. Our results provide evidence that the natural history of alternating hemiplegia is highly variable and unpredictable for individual patients. However, we did not find evidence to support a steadily progressive and degenerative course of the disorder when patients were analysed as a group. For a minority of patients, a risk of sudden death was associated with more severe neurological impairment. The European Network for Research on Alternating Hemiplegia Registry, validated by our study, includes all major neurological signs and symptoms of alternating hemiplegia and may thus be used as a precedent for the progressive inclusion and follow-up of patients as well as a reference for genetic studies and treatment trials.

Which factors impact on clinician-rated impairment in children with ADHD?

OBJECTIVES: To describe the associations between a range of demographic, family and clinical factors and clinician-rated measures of global impairment in children with ADHD symptoms obtained at the baseline assessment in the ADHD Observational Research in Europe (ADORE) study. METHODS: Global impairment was measured by clinicians using the Clinical Global Impression-Severity (CGI-S) scale and the Children's Global Assessment Scale (CGAS). Associations with independent variables were investigated using forward-stepwise regression models. RESULTS: For the CGI-S and CGAS analyses, complete data sets were available for 1,265 and 985 children, respectively. The baseline mean CGI-S score in this population was 4.4 (SD 0.9) and the mean CGAS score was 55.0 (SD 10.6). Factors significantly associated with increased impairment on both outcome measures were: increased severity of ADHD symptoms, increased peer relationship problems and presence of oppositional defiant disorder and/or conduct disorder. Also, the presence of anxiety and/or depression and the presence of somatic symptoms were associated with increased impairment on CGI-S,while family health problems and premature birth were associated with increased impairment on CGAS. CONCLUSIONS: The severity of clinician-rated impairment in the ADORE sample is increased by the presence of disruptive behaviour problems and emotional problems, somatic symptoms, peer relationship difficulties, family health problems and premature birth.

Factors related to health-related quality of life (HRQoL) among children with ADHD in Europe at entry into treatment.

OBJECTIVE: To describe the associations between a range of baseline factors (demographic, family and clinical) and parent-reported health-related quality of life (HRQoL) of children with ADHD taking part in the ADORE study. METHODS: HRQoL was rated using the Parent Report Form of the Child Health and Illness Profile-Child Edition (CHIP-CE). Forward-stepwise linear regression models were used to investigate associations with 26 independent variables. Separate models were fitted for each of the five CHIP-CE domains (Satisfaction, Comfort, Resilience, Risk Avoidance and Achievement) and two subdomains of Achievement (Academic Performance and Peer Relations). RESULTS: CHIP-CE domain mean scores were lower than community norms, especially for Risk Avoidance and Achievement, indicating a low level of HRQoL. Clinical factors significantly associated with a poorer HRQoL included ADHD symptoms (inattention, hyperactivity-impulsivity), conduct problems, peer relationship problems, having asthma, multiple other somatic symptoms and co-ordination problems. Family factors, such as having a parent with a health or mental health problem possibly caused by the child's illness, child not living with both parents and maternal smoking during pregnancy were also associated with a worse HRQoL in some CHIP-CE domains/subdomains. CONCLUSIONS: Numerous factors independently impact on the HRQoL of children with ADHD.

Validity of the health-related quality of life assessment in the ADORE study: Parent Report Form of the CHIP-Child Edition.

OBJECTIVES: To examine the cross-sectional reliability and validity of the Parent Report Form of the Child Health and Illness Profile-Child Edition (CHIP-CE), a generic measure of health-related quality of life (HRQoL), in children with ADHD in the pan-European ADHD Observational Research in Europe (ADORE) study. METHODS: Parents of children with ADHD (aged 6-18 years) in 10 European countries completed the CHIP-CE at the baseline visit (n=1,477; data missing for one patient). Analyses included determination of internal consistency reliability, ceiling and floor effects, factor analysis, and Pearson's correlations between CHIP-CE and other scales used to measure ADHD severity, problems and family strain. RESULTS: Internal consistency reliability was good-to-excellent (Chronbach's alpha>0.70) for all CHIP-CE domains and subdomains, and almost no ceiling and floor effects were observed. Factor analysis of the subdomains yielded a 12-factor solution. The domainlevel factor analysis identified six factors, the four domains of Satisfaction, Comfort, Resilience and Risk Avoidance. The two subdomains of Achievement domain, Peer Relations and Academic Performance, were separate factors in this sample. There were moderate-to-high correlations between the CHIP-CE scales and measures of ADHD and family factors. The HRQoL of children in ADORE was dramatically lower than that of community youth,with mean CHIP-CE scores almost 2 standard deviations below community norms. CONCLUSIONS: The validity and reliability of CHIP-CE to measure HRQoL in children with ADHD across Europe was confirmed.

The Family Strain Index (FSI). Reliability, validity, and factor structure of a brief questionnaire for families of children with ADHD.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) in children affects every member of the family. Practical tools are needed to assess the effects of ADHD on families to better understand and address the level of stress, strain and burden that families experience. OBJECTIVE: To provide the preliminary reliability, validity and factor structure of the Family Strain Index (FSI), a 6-item parent-report questionnaire. METHODS: The FSI was completed by 1,477 parents of children with ADHD (aged 6-18 years) at the baseline visit of the ADORE study in 10 European countries (data missing for one patient). RESULTS: The FSI taps into an overall experience of worry and interruptions of activities in families of children with ADHD, as a single factor was identified with excellent internal consistency (alpha=0.87). Despite its brevity, almost no ceiling (worst score) or floor (best score) effects were observed for families of these highly symptomatic children. This score distribution and the 5-point response options suggest that the FSI will be responsive to changes in the experience of family strain associated with children's ADHD treatment. CONCLUSION: The ease of completion and coherence of the underlying construct indicates that the FSI may be a practical clinical tool for monitoring changes in family strain associated with children's ADHD treatment.

[Berufliche rehabilitation in der jugendpsychiatrie.].

Vocational integration is an important developmental task that must be mastered if an adolescent is to function successfully in adult society. Moreover adolescence is a period of transition and rapid change, influenced by biological, psychological and social interactions. Not only adolescents with manifest psychiatric disorders, but also those with a combination of different symptoms which don't meet the requirements of a stable diagnosis, need context-sensitive support. In 1996 the youth-specific activities of pro mente Kärnten (an association offering different support to people with mental disorders) became a stand-alone association, dedicated to the special-needs of children's and adolescent's mental and social health. In the field of vocational rehabilitation, pro mente Jugend started with a 6-month (since 2001 12-month) prevocational training (Works) for 18 participants, financed by the Bundessozialamt and targeting a vocational integration after the course. This program proved helpful for adolescents with moderate handicaps and learning disabilities, whereas clients with severe mental disorders (e.g. psychosis and affective disorders) couldn't be supported adequately within 6 nor within 12 months. These people have shown the poorest vocational outcome. Therefore, rapid vocational integration is not a realistic aim for all clients. According to our experience, pro mente jugend makes efforts to develop and provide different out-patient services, bridging the broad transition from hospital based programs to the first labour market - corresponding to the special needs of the clients. At each level, different outcomes are targeted: there are day-care, work therapy and social participation, as well as prevocational training, apprenticeship, integration or transition employment. One of this modules already exists and offers apprenticeship to disadvantaged adolescents. A day-care center for clients with psychotic and affective disorders is being planned currently. For implementing this concept, pro mente Jugend will consider some principles: near to the clients needs and shared-decision making with them - based on ongoing assessment, diagnostic and planning; consumer-driven Case Management to provide the sufficient support in time; respecting people's right to work and addressing their strengths and preferences; empowerment and full participation. Because of the governments budgetary limits, we intend to cooperate with responsible parts of the civic society and companies, which are ready to engage in social activities.