Purpose: Linking ready-made questionnaires to codes within the International Classification of Functioning, Disability and Health, Children and Youth Version with the intention of using the information statistically for studying mental health problems can pose several challenges. Many of the constructs measured are latent, and therefore, difficult to describe in single codes. The aim of this study was to describe and discuss challenges encountered in this coding process.

Materials and methods: A questionnaire from a Swedish research programme was linked to the International Classification of Functioning, Disability and Health, Children and Youth Version and the agreement was assessed.

Results: Including the original aim of the questionnaire into the coding process was found to be very important for managing the coding of the latent constructs of the items. Items from the International Classification of Functioning, Disability and Health, Children and Youth Version chapters with narrow definitions for example mental functions, were more easily translated to meaningful concepts to code, while broadly defined chapters, such as interactions and relationships, were more difficult.

Conclusion: This study stresses the importance of a clear, predefined coding scheme as well as the importance of not relying too heavily on common linking rules, especially in cases when it is not possible to use multiple codes for a single item.

• Implications for rehabilitation

• The International Classification of Functioning, Disability and Health, Children and Youth Version, is a useful tool for merging assessment data from several sources when documenting adolescents’ mental functioning in different life domains.

• Measures of mental health are often based on latent constructs, often revealed in the description of the rationale/aim of a measure. The latent construct should be the primary focus in linking information.

• By mapping latent constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version, users of the classification can capture a broad range of areas relevant to everyday functioning in adolescents with mental health problems.

• The subjective experience of participation, i.e., the level of subjective involvement, is not possible to code into the International Classification of Functioning, Disability and Health, Children and Youth Version. However, when linking mental health constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version codes, the two dimensions of participation (the being there, and the level of involvement) need to be separated in the linking process. This can be performed by assigning codes focusing on being there as separate from items focusing on the subjective experience of involvement while being there.

PURPOSE: To investigate how individual and environmental factors relate to self-reported participation profiles in adolescents with and without impairments or long-term health conditions.

METHODS: A person-oriented approach (hierarchical cluster analysis) was used to identify cluster groups of individuals sharing participation patterns in the outcome variables frequency perceived importance in domestic life and peer relations. Cluster groups were compared using one-way analysis of variance (ANOVA).

RESULTS: A nine-cluster solution was chosen. All clusters included adolescents with impairment and long-term health conditions. Perceived importance of peer relations was more important than frequent attendance in domestic-life activities. Frequency of participation in dialogues and family interaction patterns seemed to affect the participation profiles more than factors related to body functions.

CONCLUSION: Type of impairment or long-term health condition is a weaker determinant of membership in clusters depicting frequency and perceived importance in domestic life or peer relations than dialogue and family environment.

Even though participation in everyday events is a vital part in the fulfilment of human rights, adolescents with neurodevelopmental disorders often face participation restrictions in every-day activities. Few studies have investigated the predictors for participation in different contexts, over time and in relation to the same outcome variables. The objective of the current study was therefore to investigate predictors of change in participation operationalized as frequency of attendance and perceived importance in domestic life activities, peer related activities, and school activities as experienced by adolescents with and without self-reported neurodevelopmental disorders. Method: Associations with participation, both in terms of frequency and perceived importance, in domestic life, peer relations, and the school setting were investigated using six independent variables measuring experience of time and self, sex, age, stress, support from siblings, and atmosphere in family at two-time (with approximately 2 years in between). The sample consisted of adolescents with and without self-reported neurodevelopmental disorders (n= 916). Adolescents with self-reported neurodevelopmental disorders were n=154 and adolescents without self-reported neurodevelopmental disorders was n= 762. Data was collected via self-reported questionnaires administered in schools. Results: Three key findings are presented. 1) more factors were associated with participation outcomes at time1 for adolescents without NDD than for adolescents with NDD, but this difference in the number of factors decreases with time; 2) few associations were related to time for both adolescents with and without NDD; and 3) patterns of predicting variables were different for adolescents with and without NDD. Conclusion: The findings indicate that the factors related to participation in and outside school differs between groups, when the impairment or disability is not considered as a predictor for participation. This study supports the need for using a multidimensional developmental and contextual perspective in addressing enhanced participation for adolescents with neurodevelopmental disorders.

Background

With maturity and development, complexity in demands and roles change. As participation is often restricted in children with disabilities, this process might be delayed in adolescents. Investigating profiles of participation for adolescents with and without neurodevelopmental impairments could provide an understanding of which factors relate to high level of participation. The aim is to investigate trajectories of participation in everyday activities across clusters based on self-rated participation patterns in frequency of participation and perceived importance of activities related to domestic life and peer-related activities for adolescents with and without self-reported neurodevelopmental impairments.

Methods and procedures

A prospective person-based cohort study design.

Outcomes and results

Five typical trajectories were identified. Trajectories between clusters with high perceived involvement in peer relations were associated with sibling support and family communication. Self-reported neurodevelopmental impairments did not predict participation profiles at certain time points, nor movements between clusters when measuring self-reported attendance and importance in domestic life and in peer-related activities.

Conclusion and implications

Perceived sibling support and family communication are important for predicting typical trajectories across clusters in frequency of attendance and the perceived importance of domestic life and peer relations. Type of impairment was less important in predicting typical trajectories.