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Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment
Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Pediatric Hematology and Oncology, Uppsala University Hospital, Uppsala, Sweden.ORCID iD: 0000-0001-9020-3546
Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
School of Nursing and Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Department of Mental Health, Norwegian Natural science and Technology Unversity, Trondheim, Norway.ORCID iD: 0000-0001-9597-039X
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2023 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 45, no 23, p. 3841-3851Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment.

MATERIALS AND METHODS: Hospital, habilitation and school records for nine children (5-11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations.

RESULTS: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children's documented problems with participation in everyday life.

CONCLUSIONS: The combination of ICF and CPS can provide a comprehensive view of the child's problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitationCare should be guided by interventions and support directed at individual children and their everyday life.The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child's patterns of problems and how these affects the child's everyday life.It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children's natural settings.The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children.

Place, publisher, year, edition, pages
Taylor & Francis, 2023. Vol. 45, no 23, p. 3841-3851
Keywords [en]
Brain tumor, ICF, child, document analysis, everyday life, patterns of problems, treatment completion
National Category
Nursing Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-58856DOI: 10.1080/09638288.2022.2140845ISI: 000879730300001PubMedID: 36341684Scopus ID: 2-s2.0-85141553431Local ID: HOA;intsam;58856OAI: oai:DiVA.org:hj-58856DiVA, id: diva2:1709960
Funder
Swedish Childhood Cancer FoundationAvailable from: 2022-11-10 Created: 2022-11-10 Last updated: 2025-10-13Bibliographically approved
In thesis
1. Participation in everyday life for children who have completed brain tumour treatment
Open this publication in new window or tab >>Participation in everyday life for children who have completed brain tumour treatment
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis, framed in the research area of health and care sciences, describes children’s problems with functioning in everyday life after ending brain tumour treatment. Such problems can affect the child’s likelihood of participating in everyday life activities, that are important for their development and health. Therefore, it is important to comprehensively assess the child’s problems with functioning following brain tumour treatment, to find out what support is required and how the support can be given.

The overall aim of this thesis was to explore patterns of documented problems with functioning in everyday life for children who have completed brain tumour treatment and to develop a protocol to test the feasibility of a child directed intervention to meet these problems.

This thesis comprises four scientific papers (I-IV) that uses retrospective (I-III), case-focused (II-III), longitudinal (III) and prospective designs (IV), with qualitative and quantitative methods to meet the overall aim. In Papers I-III, data were collected by using a standardized data extraction form and retrospectively reviewing problems written in professional records after the child completed brain tumour treatment. Retrieved problems were linked to suitable codes within the International Classification of Functioning, disability and health (ICF) framework. Paper I uses descriptive statistics to portray frequency of ICF linked problems on service and group levels, with network diagrams displaying the inter-relatedness of the problems. Paper II illustrate variations of problems within body, activity, participation and environment, on individual and group levels. In Paper II-III, an in-depth analysis of tentatively constructed patterns of co-occurring problems with participation was performed, guided by the collaborative problem-solving (CPS) model. In Paper III, trends of problems in six-month periods over four years of follow-up in health care, habilitation and school, were shown. In paper IV, a child-directed intervention protocol based on the CPS model was developed to evaluate the feasibility of content and procedures.

The findings from Paper I revealed that most problems were documented in health care records, and few problems were documented in habilitation and school records. The most frequent documented problems were related to the child´s physical and psychological body function (fatigue, memory), followed by problems with activity (reading, fine hand use) and participation (education, peer relations). Problems related to environmental factors (aids, service support) were limited. The network diagrams showed that the ICF linked problems formed clusters of inter-related physical- (energy, movement), cognitive- (memory, sense-of-self), participation- (school, friendship) and environment-related problems (service support, aids). The findings from paper II showed individual variations in the proportion of problems within body, activity, participation and environment, when compared to the group. In the tentative constructed case analyses in paper II-III, the findings showed that all children had participation problems related to education and peer-relations, with the third child-case (Paper III) also having problems to care for personal health. The evaluation of the feasibility of the child-directed intervention protocol, described in paper IV, will be tested in a future research study.

Through the lens of a bio-psychosocial understanding of the child´s functioning in everyday life, professionals can contribute to identify facilitators and barriers for the child´s functioning, to furthermore tailor child- supportive interventions collaboratively, to enhance the child´s participation and thus their health in everyday life.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2025. p. 102
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 145
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-67712 (URN)978-91-88669-65-0 (ISBN)978-91-88669-66-7 (ISBN)
Public defence
2025-06-03, Forum Humanum, Hälsohögskolan, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2025-05-08 Created: 2025-05-08 Last updated: 2025-10-13Bibliographically approved

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Björklund, Ann-ChristinDarcy, LauraGranlund, MatsBjörk, Maria

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