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Gothilander, J., Axelsson, A. K., Danielsson, H., Almqvist, L. & Ullenhag, A. (2024). Factor structure of FUNDES-Child-SE measuring the participation and independence of children with disabilities. Child Care Health and Development, 50(4), Article ID e13306.
Open this publication in new window or tab >>Factor structure of FUNDES-Child-SE measuring the participation and independence of children with disabilities
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2024 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 50, no 4, article id e13306Article in journal (Refereed) Published
Abstract [en]

Background: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. Methods: Caregivers of 163 children with disabilities aged 6–18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. Results: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. Conclusions: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

Place, publisher, year, edition, pages
John Wiley and Sons Inc, 2024
Keywords
daily activities, habilitation, psychometrics, questionnaire, rehabilitation, validity
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-68108 (URN)10.1111/cch.13306 (DOI)001268656500001 ()39014984 (PubMedID)2-s2.0-85198615412 (Scopus ID)
Available from: 2024-07-24 Created: 2024-07-24 Last updated: 2024-07-31Bibliographically approved
Ullenhag, A., Imms, C., Anaby, D., Kramer, J. M., Girdler, S., Gorter, J. W., . . . Granlund, M. (2024). How can we reach long-lasting inclusive participation for all?: A vision for the future. Child Care Health and Development, 50(2), Article ID e13249.
Open this publication in new window or tab >>How can we reach long-lasting inclusive participation for all?: A vision for the future
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2024 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 50, no 2, article id e13249Article in journal (Refereed) Published
Abstract [en]

In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Place, publisher, year, edition, pages
John Wiley and Sons Inc, 2024
Keywords
childhood disability, disability, interventions, participation, rehabilitation
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-66336 (URN)10.1111/cch.13249 (DOI)001189850900001 ()38523460 (PubMedID)2-s2.0-85188475795 (Scopus ID)
Note

Article; Export Date: 02 April 2024; Cited By: 0; Correspondence Address: A. Ullenhag; Department of Physiotherapy, Academy of Health, Care and Welfare, Mälardalens University, Västerås, Sweden; email: anna.ullenhag@mdu.se; CODEN: CCHDD

Available from: 2024-04-02 Created: 2024-04-02 Last updated: 2024-04-03Bibliographically approved
Gothilander, J., Ullenhag, A., Danielsson, H. & Axelsson, A. K. (2023). Reliability of FUNDES-Child-SE - measuring participation and independence of children and youths with disabilities. Scandinavian Journal of Occupational Therapy
Open this publication in new window or tab >>Reliability of FUNDES-Child-SE - measuring participation and independence of children and youths with disabilities
2023 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014Article in journal (Refereed) Published
Abstract [en]

Background: There is a need for an instrument to measure participation and independence in children with disabilities. FUNDES-Child-SE has its origin in the participation questionnaire Child and Adolescent Scale of Participation. Aims: Test the psychometric properties of internal consistency and test-retest reliability. Material and methods: This cross-sectional study included caregivers of 163 children with disability aged 6–18 years, 59 of whom were also included in the test-retest study. Descriptive statistics were used to evaluate the proportions of valid ratings. Internal consistency and test-retest reliability were tested through Cronbach’s alpha and the intra-class correlation coefficient. Results: The amount of not relevant/not applicable ratings was substantial but varied between items and subdomains. Internal consistency was acceptable (0.8–0.95), and the test-retest was marginal to excellent (0.73–0.95). Conclusions: The reliability together with the content validity support the use of the FUNDES-Child-SE to measure participation and independence in children with disabilities. However, results should be interpreted with caution due to the small sample size and possible selection bias. Modifications to reduce the not relevant/not applicable responses should be investigated together with the instrument’s responsiveness. Significance: FUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting. 

Place, publisher, year, edition, pages
Taylor and Francis Ltd., 2023
Keywords
Habilitation, internal consistency, psychometric, rehabilitation, test-retest
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:mdh:diva-63958 (URN)10.1080/11038128.2023.2237214 (DOI)001044221300001 ()37552981 (PubMedID)2-s2.0-85166914753 (Scopus ID)
Available from: 2023-08-16 Created: 2023-08-16 Last updated: 2023-11-30Bibliographically approved
Axelsson, A. K., Ullenhag, A. & Odman, P. (2022). A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System - Child version. Disability and Rehabilitation, 44(9), 1720-1727
Open this publication in new window or tab >>A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System - Child version
2022 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 44, no 9, p. 1720-1727Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context. Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. Results: The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD, 2022
Keywords
Children, participation, questionnaire, cultural validation, interviews
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-58627 (URN)10.1080/09638288.2021.1917704 (DOI)000646970400001 ()33941022 (PubMedID)2-s2.0-85105399300 (Scopus ID)
Available from: 2022-06-08 Created: 2022-06-08 Last updated: 2023-11-30Bibliographically approved
Steinhardt, F., Dolva, A.-S., Jahnsen, R. & Ullenhag, A. (2022). Exploring two subdimensions of participation, involvement and engagement: A scoping review. Scandinavian Journal of Occupational Therapy, 29(6), 441-463
Open this publication in new window or tab >>Exploring two subdimensions of participation, involvement and engagement: A scoping review
2022 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 29, no 6, p. 441-463Article in journal (Refereed) Published
Abstract [en]

Background The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. Methods In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. Results Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. Conclusions This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.

Place, publisher, year, edition, pages
Taylor & Francis, 2022
Keywords
Children and youth, disability, participation, physical activity, rehabilitation
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-55508 (URN)10.1080/11038128.2021.1950207 (DOI)000671477800001 ()34242105 (PubMedID)2-s2.0-85110391824 (Scopus ID)
Available from: 2021-08-05 Created: 2021-08-05 Last updated: 2023-11-30Bibliographically approved
Miklos, M., Jahnsen, R., Nyquist, A. & Ullenhag, A. (2022). How transactional relations contribute to adaptive developmental outcomes when young people with disabilities participate in specially designed group programs − a scoping review. Scandinavian Journal of Occupational Therapy, 29(8), 670-685
Open this publication in new window or tab >>How transactional relations contribute to adaptive developmental outcomes when young people with disabilities participate in specially designed group programs − a scoping review
2022 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 29, no 8, p. 670-685Article in journal (Refereed) Published
Abstract [en]

 Background:  Meta-synthesis can enhance our existing knowledge regarding experiences of participation in group-based programs designed for young people with disabilities.

 Aim:  This study aimed to identify the transactional relations between the social contexts in group programs and meaningful personal experiences and developmental processes for young people with disabilities.

 Method:  For this research, 4 electronic data-bases were searched, 3406 citations were reviewed, and 13 qualitative studies describing experiences of participation in specially designed group-based programs from the perspective of young people with disabilities were included. A meta-ethnographic approach was used to synthesise the data, and resulting categories were conceptualised in King et al.'s framework of transactional processes and adaptive development.

 Results:  Nineteen categories across six themes describing: environment, social context, social mechanisms, personal processes, meaningful experiences, and outcomes demonstrated the dynamic interrelation between social context and personal processes. Peer group interaction was essential for exploring capacities and developing strategies.

 Conclusion:  This review highlights the important role of the peer group in transferring program experiences into the everyday life contexts of young people with disabilities. It may assist professionals who are considering the use of peer groups when planning participation-focussed programs aiming to facilitate personal development for young people with disabilities.

Keywords
Adolescence; meaningful experiences; participation; peer interactions; self-understanding; young adults
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-58279 (URN)10.1080/11038128.2021.1903989 (DOI)000640008900001 ()33820493 (PubMedID)2-s2.0-85103617870 (Scopus ID)
Available from: 2022-05-24 Created: 2022-05-24 Last updated: 2023-11-30Bibliographically approved
Dalen, L. K., Nyquist, A., Shields, L., Stanley, D., Nyquist, T. E., Jahnsen, R. & Ullenhag, A. (2021). ActiveYou I - a new web-based measure of activity preferences among children with disabilities. Scandinavian Journal of Occupational Therapy, 28(8), 598-608
Open this publication in new window or tab >>ActiveYou I - a new web-based measure of activity preferences among children with disabilities
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2021 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 28, no 8, p. 598-608Article in journal (Refereed) Published
Abstract [en]

Background Children's preferences for activities are one of the most important predictors for participation. Currently no web-based measure of activity preferences exists for children with disabilities. Aim To develop and investigate feasibility and internal consistency of a new web-based measure of activity preferences, ActiveYou I for children with disabilities. Materials and methods The ActiveYou I was developed in three steps using a mixed-methods design. A review of the preferred goal activities of 149 children with disabilities was used to identify relevant activities. A pilot version of ActiveYou I was tested with 341 children with disabilities. Semi-structured group interviews and cognitive interviews were conducted with therapists and children with disabilities. Results Nineteen physical activities were included in the pilot version. The pilot trial resulted in two activities being excluded, and one activity added, leaving the instrument with eighteen activities. Internal consistency was acceptable (Cronbach's alpha >= 0.77). Interviews with therapists and children showed that ActiveYou I included relevant activities and was easy to answer. Conclusion ActiveYou I proves to be a valid and feasible, web-based instrument for mapping activity preferences in children and adolescents with disabilities. Significance Preferences are an important mediator for participation; consequently it is essential to seek activities that match the children's preferences.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD, 2021
Keywords
Choice, digital, impairment, participation, assessment utility
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-53737 (URN)10.1080/11038128.2020.1822442 (DOI)000582670700001 ()32955958 (PubMedID)2-s2.0-85091230840 (Scopus ID)
Available from: 2021-03-25 Created: 2021-03-25 Last updated: 2021-12-21Bibliographically approved
Imms, C., Jahnsen, R. & Ullenhag, A. (2021). Capture the magic: participation for all. Disability and Rehabilitation
Open this publication in new window or tab >>Capture the magic: participation for all
2021 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
- TAYLOR & FRANCIS LTD, 2021
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-56332 (URN)10.1080/09638288.2021.1994026 (DOI)000710855200001 ()34693841 (PubMedID)2-s2.0-85118181780 (Scopus ID)
Available from: 2021-11-04 Created: 2021-11-04 Last updated: 2023-11-30Bibliographically approved
Ullenhag, A., Ek, L., Eliasson, A.-C. & Krumlinde-Sundholm, L. (2021). Interrater and test-retest reliability of the Hand Assessment for Infants. Developmental Medicine & Child Neurology, 63(12), 1456-1461
Open this publication in new window or tab >>Interrater and test-retest reliability of the Hand Assessment for Infants
2021 (English)In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 63, no 12, p. 1456-1461Article in journal (Refereed) Published
Abstract [en]

Aim To evaluate the interrater and test-retest reliability, standard error of measurement (SEM), and the smallest detectable difference (SDD) of the Hand Assessment for Infants (HAI). Method HAI assessments of 55 infants (26 females, 29 males), 25 with clinical signs of unilateral cerebral palsy (CP) and 30 typically developing (mean [SD] age 6.8mo [2.4], range 3-11mo), were scored individually by three therapists. Three clinically experienced occupational therapists (OT 1-OT 3) with extensive experience in using the HAI, independently scored the video recorded HAI play sessions. Analysis of the combined group of infants and just the infants with clinical signs of unilateral CP (12 females, 13 males; mean age 7.6mo [2.1]) were conducted. Intraclass correlation coefficients (ICC, 2.1), Bland-Altman plots, SEM, and SDD were calculated. Results Interrater and test-retest reliability were excellent for the Both Hands Measure (BoHM) and the Each Hand Sum score (EaHS), with ICCs of 0.96 to 0.99. For individual items, the interrater and test-retest reliability was good to excellent (ICC 0.81-0.99). The SDD for the EaHS was 2 points, and for the BoHM the SDD it was 3 HAI units for infants with signs of unilateral CP. Interpretation The HAI results showed good to excellent reliability. The SDDs were low, indicating that results beyond these levels exceed the measurement error and, thus, can be considered true changes.

Place, publisher, year, edition, pages
WILEY, 2021
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-55510 (URN)10.1111/dmcn.14967 (DOI)000669597000001 ()34224136 (PubMedID)2-s2.0-85109171557 (Scopus ID)
Available from: 2021-08-05 Created: 2021-08-05 Last updated: 2022-10-26Bibliographically approved
Steinhardt, F., Ullenhag, A., Jahnsen, R. & Dolva, A.-S. (2021). Perceived facilitators and barriers for participation in leisure activities in children with disabilities: perspectives of children, parents and professionals. Scandinavian Journal of Occupational Therapy, 28(2), 121-135
Open this publication in new window or tab >>Perceived facilitators and barriers for participation in leisure activities in children with disabilities: perspectives of children, parents and professionals
2021 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 28, no 2, p. 121-135Article in journal (Refereed) Published
Abstract [en]

Background: There is limited knowledge about facilitators and barriers to leisure activity participation for children with disabilities in Norway, which is needed to improve rehabilitation interventions. Aim: This study aims to explore the main facilitators and barriers for participation in leisure activities for children and youth with disabilities in Norway. Methods: Semi-structured group interviews with 31 parents, 20 healthcare professionals, and nine children with disabilities were conducted. Qualitative content analysis with thematic coding was used, and the model of factors affecting the participation of children with disabilities developed by King et al. was applied for further deductive analysis. Results: Child factors, as viewed by parents and professionals, worked primarily as barriers and tended to increase with the child's age. The children themselves focussed on their own preferences, friendship and enjoyment as their main facilitators for participation. Most environmental and family factors worked both as facilitators and as barriers, with parental support as the most important facilitator. Differences between urban and rural areas in the availability and accessibility of activities were reported.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD, 2021
Keywords
Children, disability, leisure activities, measurement, participation, rehabilitation
National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-50663 (URN)10.1080/11038128.2019.1703037 (DOI)000503291200001 ()31852318 (PubMedID)2-s2.0-85076893197 (Scopus ID)
Available from: 2020-09-18 Created: 2020-09-18 Last updated: 2021-12-21Bibliographically approved
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ORCID iD: ORCID iD iconorcid.org/0000-0002-9210-0986

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