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Participation in everyday life for children who have completed brain tumour treatment
Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-9020-3546
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: urn:nbn:se:hj:diva-67712ISBN: 978-91-88669-65-0 (print)ISBN: 978-91-88669-66-7 (electronic)OAI: oai:DiVA.org:hj-67712DiVA, id: diva2:1957232
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: 2025-05-09Bibliographically approved
List of papers
1. Using ICF to Describe Problems With Functioning in Everyday Life for Children Who Completed Treatment for Brain Tumor: An Analysis Based on Professionals’ Documentation
Open this publication in new window or tab >>Using ICF to Describe Problems With Functioning in Everyday Life for Children Who Completed Treatment for Brain Tumor: An Analysis Based on Professionals’ Documentation
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2021 (English)In: Frontiers in Rehabilitation Sciences, ISSN 2673-6861, Vol. 2, article id 708265Article in journal (Refereed) Published
Abstract [en]

Background: Children treated for brain tumors often experience persistent problems affecting their activity performance and participation in everyday life, especially in school. Linking these problems to the International Classification of Functioning, Disability and Health (ICF) classification system can be described as affecting body function, activity performance, and/or participation. Services involved in the everyday life of the child have different focus and goals when meeting the child in context, which advantage the use of ICF to overcome this impediment to follow-up and provide comprehensive support for children who have completed treatment for a brain tumor.

Aim: The aim of the study was to use the ICF classification system to describe how professionals in healthcare, habilitation, and school document problems with everyday life functioning at body, activity, and participation levels for children who completed treatment for a brain tumor.

Materials and Methods: A retrospective review of records from healthcare, habilitation, and school concerning nine children completed treatment for brain tumor was implemented. Identified problems in everyday life were linked to ICF codes. Descriptive statistics of ICF-linked code frequency supplemented by network visualization diagrams viewing the co-occurrence between codes within the body, activity participation, and environmental components were performed.

Results: Most documented problems were found in healthcare records, whereas the documentation in habilitation and school was sparse. The frequently occurring codes, independent of record source, were linked to the body function component, and ICF-linked problems in habilitation and school were salient in the activity and participation component. To gain a holistic picture of relations between ICF codes and problems, network visualization diagrams were used to illustrate clusters of problems.

Conclusion: Code prevalence likely reflects where healthcare professionals and educators focus their attention when meeting the needs of children treated for a brain tumor in context. To maximize the comprehensive view of functioning and participation of children in everyday life, the full range of difficulties regarding body impairments, activity limitations, and participation restrictions must be identified and linked to each other in patterns of co-occurrence, which the ICF facilitate. However, ICF provides no guidance on how to identify networks of problems within the body, activity, and participation. Identifying such networks is important for building comprehensive interventions for children.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2021
Keywords
child, brain tumor, ICF, documentation, problem, everyday life
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-54713 (URN)10.3389/fresc.2021.708265 (DOI)001008690100001 ()36188761 (PubMedID)2-s2.0-85135959073 (Scopus ID)GOA;intsam;767101 (Local ID)GOA;intsam;767101 (Archive number)GOA;intsam;767101 (OAI)
Funder
Swedish Childhood Cancer Foundation, TJ2016/0032
Available from: 2021-09-23 Created: 2021-09-23 Last updated: 2025-05-08Bibliographically approved
2. Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment
Open this publication in new window or tab >>Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment
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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
Keywords
Brain tumor, ICF, child, document analysis, everyday life, patterns of problems, treatment completion
National Category
Nursing Pediatrics
Identifiers
urn:nbn:se:hj:diva-58856 (URN)10.1080/09638288.2022.2140845 (DOI)000879730300001 ()36341684 (PubMedID)2-s2.0-85141553431 (Scopus ID)HOA;intsam;58856 (Local ID)HOA;intsam;58856 (Archive number)HOA;intsam;58856 (OAI)
Funder
Swedish Childhood Cancer Foundation
Available from: 2022-11-10 Created: 2022-11-10 Last updated: 2025-05-08Bibliographically approved
3. Trends of Problems with Functioning in Everyday Life for Children Post Brain Tumour Treatment: As documented in Professional Records
Open this publication in new window or tab >>Trends of Problems with Functioning in Everyday Life for Children Post Brain Tumour Treatment: As documented in Professional Records
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-67710 (URN)
Note

Included in thesis in manuscript form (submitted).

Available from: 2025-05-08 Created: 2025-05-08 Last updated: 2025-05-08
4. A child-directed intervention to support participation in everyday life after brain tumour treatment – A feasibility study protocol
Open this publication in new window or tab >>A child-directed intervention to support participation in everyday life after brain tumour treatment – A feasibility study protocol
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-67708 (URN)
Note

Included in thesis in manuscript form.

Available from: 2025-05-08 Created: 2025-05-08 Last updated: 2025-05-08

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