Magnus Ivarsson

Cognitive and behavioural development research often relies on validated and standardised assessments, which can indicate whether performance falls within typical or atypical boundaries for a given chronological age. However, researchers planning large collaborative projects and/or collecting data from hard-to-reach populations may face problems when attempting to use some of the most widely adopted measures. We outline the major consequences of restricting access and preventing modifications of measures for research in the fields of developmental psychology and education. The problems are illustrated using a case example of a big team science project on intellectual disability. Finally, a plan for collective action to establish public domain assessment tools is presented with specific recommendations for research funders and researchers. In the interest of scientific progression and international collaboration, we conclude that there should be opportunities for free access to research measures and their unrestricted adaptation and modification.Corresponding author Marta Topor: marta.topor@liu.se

Background: Participation (attendance and engagement) is important for children's development and well‐being. The aim was to study the relationships between attendance, engagement and independence in everyday activities of children with intellectual and other developmental disabilities and to compare patterns between children with and without comprehension difficulties. Method: Participation and independence (FUNDES‐Child‐SE) were measured in 131 Swedish participants (aged 5–18 years). The analysis included Mann–Whitney U and Spearman's rank correlation tests. Results: The group without comprehension difficulties attended with a frequency more similar to typically developing peers, with higher engagement and independence. There were very strong overall attendance‐engagement correlations ( r = 0.91 for the group with comprehension difficulties and r = 0.87 for the group without) and attendance‐independence correlations ( r = 0.86 and r = 0.87), as well as a strong correlation between engagement and independence ( r = 0.78 and r = 0.77). Conclusions: Despite strong overall correlations between dimensions, differences across specific activity items underscore the need for targeted assessment and intervention.

Aims: To investigate whether mental health problems can be described as a latent factor indicated by nine items in the Swedish Survey of Children’s Living Conditions (Barn-ULF), and to explore whether this structure varies across disability, age, gender and cohorts. Methods: Cross-sectional survey data collected yearly from 2013 to 2019 regarding 3676 children (aged 10–18 years) was retrieved from two linked national registers: Barn-ULF (child-reported mental health problems data) and ULF/SILC (parent-reported data on child characteristics). The structural validity of the one-factor model was assessed using confirmatory factor analysis (CFA) and threshold invariance concerning disability, gender, age and cohort was tested using multigroup CFAs. The practical significance of invariance was assessed by comparing weighted scores from the single-group model and the multigroup models. Results: A substantially modified one-factor model demonstrated adequate fit ( χ 2 /df = 1.94, comparative fit index = 1.00, Tucker–Lewis index = 0.99, root mean square error of approximation = 0.02). Significant measurement non-invariance was found across all groups; however, its impact on the latent variable mean was minimal (d ). Conclusions: Barn-ULF might be a structurally valid tool for monitoring Swedish children’s mental health problems. However, differences in model performance across child characteristics and time – even if small – indicate that group comparisons must be conducted cautiously.

Objective: To describe the self‐report instruments used to measure well‐being in children with disabilities, investigate their psychometric quality, cognitive accessibility and alignment with Keyes's operationalization of well‐being, including emotional, psychological and social aspects.Methods: MEDLINE, ProQuest, PubMed and CINAHL were searched for articles published from 2011 to March 2023, identifying 724 studies. Synonyms provided by thesaurus on the main constructs: ‘children’, ‘measure’, ‘disability’ and ‘mental health’ were employed in the search strategy. Two reviewers independently screened articles using criteria following the SPIDER framework, resulting in the inclusion of 13 articles. From these, 10 instruments were extracted and critically appraised using the COSMIN checklist, evaluating their psychometric properties. The cognitive accessibility and alignment to Keyes's dual continua model of mental health were analysed.Results: The included instruments had fair to excellent psychometric properties. Instruments designed for children with disabilities demonstrated greater cognitive accessibility compared with those for the general child population. Well‐being was primarily identified as hedonic, with social aspects of positive functioning underrepresented. Five of the 10 instruments measured quality of life but were used as well‐being measures in studies. While most items aligned with the dual continua model, no single instrument encompassed all three aspects of well‐being.Conclusions: Although there is a growing effort to include children with disabilities in well‐being research, a consensus on a comprehensive well‐being self‐report measure is lacking. Further research is needed to develop a multidimensional operationalization that includes psychological and social aspects of well‐being for children with disabilities.Summary: Well‐being measures focus on hedonic aspects—emotional well‐being—and often exclude the social aspect of positive functioning within eudaimonia. There is a conceptual overlap between quality‐of‐life measures and well‐being measures. There is a tendency to emphasize individual aspects of well‐being over social dimensions. Participatory research methods reflect the ecological validity of the construct of cognitive accessibility as proposed by Kramer and Schwarts. Keyes' MHC‐SF remains the most global proposal integrating eudemonic and hedonic aspects of well‐being but has not been validated in children with disabilities.

Purpose: To develop and test an approach for assessing the risk of bias in four measurement-related domains key to the study of mental health problem trajectories in children with neurodevelopmental disorders (NDD): (1) conceptual overlap between mental health problems and NDD diagnostic criteria, (2) over-reliance on a single informant, (3) unwarranted omission of the child’s perspective, and (4) the use of instruments not designed for or adapted to the population. Methods: Building upon a previous systematic review, this study established supplementary criteria for assessing the risk of bias domains. Following this, the criteria were applied to measures used in 49 longitudinal studies of mental health problems in children with NDD. Results: The general risk of bias across domains was rated as high in 57.1% of the 49 included studies. The highest risk of bias was seen in domain four (rated as high in 87.8% of studies) and the lowest in domain three (24.5%). Conclusions: The risk of bias items enhance our understanding of the quality of the evidence about mental health problem trajectories in children with NDD. The methodological quality of future research can be increased by selecting conceptually clear scales developed for the population - preferably in the form of cognitively accessible self-report scales - and adopting a multi-informant approach.

The range of impairments in children with neurodisability (ND) complicates data collection, yet individualising materials and procedures could enable more children to self-report. This study introduces the Cognitive Accessibility Tracking Questionnaire (CATQ), designed to monitor changes enhancing accessibility ("adaptations") in interview-administered patient-reported outcome measures (PROMs). The CATQ is used in a longitudinal study of mental health and participation in children with ND investigating adaptation use and its utility in assessing the risk of bias introduced by these adaptations. The 13-item CATQ was developed with experts in ND and augmentative and alternative communication. Predictors of PROM adaptations were analysed using linear regression; the overall change was tested with a t-test and item-specific agreement with Cohen's weighted kappa and proportion of agreement. Six interviewers conducted 69 interviews, interviewing 43 children once or twice. Common adaptations included explaining/replacing concepts (56.5% of interviews), exemplifying (60.9%), or repeating questions/instructions (50.7%). Child age, seizure history, verbal communication abilities, adaptive behaviour, and interviewer identity predicted adaptation use. Adaptation use did not differ between the two data collection points, 13 months apart. The CATQ enhances methodological rigor by tracking adaptations and facilitating risk-of-bias-assessment by analysing adaptation changes and factors affecting their use.

Background: Different barriers may hinder children with developmental disabilities (DD) from having a voice in research and clinical interventions concerning fundamentally subjective phenomena, such as participation. It is not well-investigated if video communication tools have the potential to reduce these barriers.Aim: This study investigated the feasibility of administering a self-rating instrument measuring participation, Picture My Participation (PmP), via a video communication tool (Zoom), to children with DD.Materials and methods: PmP was administered to 17 children with DD (mean age 13 years). The pictorial representations of activities and response options in PmP were displayed in a shared PowerPoint presentation, enabling nonverbal responses with the annotate function in Zoom. Child and interviewer perceptions of the interview were measured through questionnaires developed for the purpose.Results: All the children completed the interview. Most PmP questions were answered, and no adverse events were registered. Technical issues could generally be solved. No special training or expensive equipment was needed for the interviews.Conclusion: Interviewer-guided self-ratings of participation and related constructs through video communication may be a feasible procedure to use with children with DD from age 11.Significance: Offering video communication may increase children’s chances to contribute subjective experiences in research and clinical practice.

The current study investigated the structural validity and internal consistency of the Strengths and Stressors (SSF) questionnaire. The SSF is used in Swedish habilitation services to measure the positive and negative consequences that the fostering of a child with a developmental disability can have on family functioning in six domains: parent's feelings and attitudes, social life, family finances, relationship to the other parent, siblings, and professional support. The proposed six‐factor model was tested with confirmatory factor analysis with data collected from 291 parents of children with developmental disabilities. The six‐factor model had an acceptable fit according to most fit indices, but two items were non‐significant. Overall, the internal consistency was acceptable or good. The SSF, with the proposed six‐factor solution, can be a useful tool when assessing parental perspectives on the impacts of having a child with a developmental disability in clinical settings and research.

The semantic network structure is a core aspect of the mental lexicon and is, therefore, a key to understanding language development processes. This study investigated the structure of the semantic network of adolescents with intellectual disability (ID) and children with typical development (TD) using network analysis. The semantic networks of the participants (n_ID = 66; n_TD = 49) were estimated from the semantic verbal fluency task with the pathfinder method. The groups were matched on the number of produced words. The average shortest path length (ASPL), the clustering coefficient (CC), and the network’s modularity (Q) of the two groups were compared. A significantly smaller ASPL and Q and a significantly higher CC were found for the adolescents with ID in comparison with the children with TD. Reasons for this might be differences in the language environment and differences in cognitive skills. The quality and quantity of the language input might differ for adolescents with ID due to differences in school curricula and because persons with ID tend to engage in different out-of-school activities compared to TD peers. Future studies should investigate the influence of different language environments on the language development of persons with ID.

Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems.