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Participation in and outside school: Self-ratings by Swedish adolescents with and without impairments and long-term health conditions
Högskolan i Jönköping, Hälsohögskolan, HHJ. CHILD.ORCID-id: 0000-0003-2827-9325
2018 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Abstract [en]

This thesis concerns the short-term state of and changes in self-rated participation in domestic life, peer relations and, to some extent, school. Participants were adolescents with and without self-reported impairments and long-term health conditions. It is a thesis in disability research and a functional perspective on the participation of adolescents in everyday activities is applied. The thesis is one of several sub-studies in the Swedish research program LoRDIA (Longitudinal Research on Development in Adolescence).

Aim: The aim was to study the relationships between individual and environmental factors and participation in a two-time point longitudinal study within the frame of the health classification system ICF-CY. The aim was also to study the impact of environmental and individual factors on self-reported participation in adolescents with and without impairments and long-term health conditions.

Methods: The study designs in the four studies are cross-sectional (studies I and II), and prospective longitudinal (studies III & IV). A combination of person-based (such as cluster analysis in studies II and IV) and variable-based methods (such as ANOVA, multiple regressions, logistic regressions (studies I, II, III and IV)) were used.

Results: When linking items from a questionnaire aiming to measure mental health in adolescents to codes in the International Classification of Functioning, Disability and Health, Children and Youth version, latent coding is preferable to manifest coding. The focus should be on the underlying meaning of the item and the primary aim of the scale from which the item originated should be taken into consideration. Concerning the self-rated experience of participation, it was stable over time when investigated from a two-time point longitudinal perspective. Results revealed that type of impairment cannot be considered the sole predictor of the experience of participation at home, with peers and in school. Factors in the microsystem, e.g. sibling support, and perceived communication within the family, are of greater importance for the level of both participation attendance and the perceived importance of participating in domestic life and peer relations.

Conclusion: Everyday functioning in adolescents with self-reported neurodevelopmental impairments is partially affected by the same factors as for children without self-reported neurodevelopmental impairments. The effect of the neurodevelopmental impairment seems more evident in school and decreases in importance with age. Factors in the environment such as the experience of sibling support and communication patterns in the family must be taken into consideration when investigating influences on participation. When measuring participation both the frequency of attendance dimension as well as the perceived importance of the activity should be included as they seem to be related to partly differing influences.

Ort, förlag, år, upplaga, sidor
Jönköping: Jönköping University, School of Health and Welfare , 2018. , s. 91
Serie
Dissertation Series. School of Health and Welfare, ISSN 1654-3602 ; 093
Nyckelord [en]
participation, adolescents, everyday functioning, ICF-CY, self-ratings, self-reported neurodevelopmental impairments, person-oriented design
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Identifikatorer
URN: urn:nbn:se:hj:diva-41236ISBN: 978-91-85835-92-8 (tryckt)OAI: oai:DiVA.org:hj-41236DiVA, id: diva2:1241793
Disputation
2018-10-26, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (Engelska)
Opponent
Handledare
Tillgänglig från: 2018-08-24 Skapad: 2018-08-24 Senast uppdaterad: 2018-10-17Bibliografiskt granskad
Delarbeten
1. Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY: Lessons learned
Öppna denna publikation i ny flik eller fönster >>Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY: Lessons learned
2018 (Engelska)Ingår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, nr 19, s. 2293-2299Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
Taylor & Francis, 2018
Nyckelord
Mental health, participation, linking rules, adolescents
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Identifikatorer
urn:nbn:se:hj:diva-35864 (URN)10.1080/09638288.2017.1334238 (DOI)000440026500010 ()28573885 (PubMedID)2-s2.0-85020216652 (Scopus ID)
Tillgänglig från: 2017-06-07 Skapad: 2017-06-07 Senast uppdaterad: 2018-09-17Bibliografiskt granskad
2. Participation profiles in domestic life and peer relations as experienced by adolescents with and without impairments and long-term health conditions
Öppna denna publikation i ny flik eller fönster >>Participation profiles in domestic life and peer relations as experienced by adolescents with and without impairments and long-term health conditions
2019 (Engelska)Ingår i: Developmental Neurorehabilitation, ISSN 1751-8423, E-ISSN 1751-8431, Vol. 22, nr 1, s. 27-38Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
Taylor & Francis, 2019
Nyckelord
ICF-CY, Participation pattern, cluster analysis, everyday functioning, person-oriented method
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:hj:diva-38459 (URN)10.1080/17518423.2018.1424266 (DOI)000456885100005 ()29313401 (PubMedID)2-s2.0-85040965252 (Scopus ID)HOA HHJ 2019 (Lokalt ID)HOA HHJ 2019 (Arkivnummer)HOA HHJ 2019 (OAI)
Tillgänglig från: 2018-01-11 Skapad: 2018-01-11 Senast uppdaterad: 2019-02-20Bibliografiskt granskad
3. Factors Associated With Participation and Change Over Time in Domestic Life, Peer Relations, and School for Adolescents With and Without Self-Reported Neurodevelopmental Disorders. A Follow-Up Prospective Study
Öppna denna publikation i ny flik eller fönster >>Factors Associated With Participation and Change Over Time in Domestic Life, Peer Relations, and School for Adolescents With and Without Self-Reported Neurodevelopmental Disorders. A Follow-Up Prospective Study
Visa övriga...
2018 (Engelska)Ingår i: Frontiers in Education, ISSN 2504-284X, Vol. 3, s. 1-13, artikel-id 28Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
Frontiers Media S.A., 2018
Nationell ämneskategori
Utbildningsvetenskap
Identifikatorer
urn:nbn:se:hj:diva-39341 (URN)10.3389/feduc.2018.00028 (DOI)
Tillgänglig från: 2018-05-02 Skapad: 2018-05-02 Senast uppdaterad: 2019-06-07Bibliografiskt granskad
4. Short-term longitudinal participation trajectories related to domestic life and peer relations for adolescents with and without self-reported neurodevelopmental impairments
Öppna denna publikation i ny flik eller fönster >>Short-term longitudinal participation trajectories related to domestic life and peer relations for adolescents with and without self-reported neurodevelopmental impairments
Visa övriga...
(Engelska)Manuskript (preprint) (Övrigt vetenskapligt)
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:hj:diva-41235 (URN)
Tillgänglig från: 2018-08-24 Skapad: 2018-08-24 Senast uppdaterad: 2018-09-17

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