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Trends of Problems with Functioning in Everyday Life for Children Post Brain Tumor Treatment: As Documented in
A-C Björklund1,2, A-I Coci1, M Granlund1,3,4,5
1The CHILD Research Group, Jönköping University, Jönköping, Sweden.
Insights
Children treated for brain tumors experience ongoing, fluctuating functional challenges. Healthcare often overlooks daily life participation and environmental barriers, focusing instead on body symptoms, impacting long-term recovery.
Area of Science:
- Pediatric Oncology
- Rehabilitation Medicine
- Health Services Research
Background:
- Children treated for brain tumors face persistent, variable functional impairments post-treatment.
- Existing healthcare and school support often prioritizes physical symptoms over participation and environmental challenges.
- Limited research addresses the co-occurrence and temporal patterns of functional problems across body, activity, and participation levels.
Purpose of the Study:
- To describe the temporal variations in documented functional problems among children after brain tumor treatment.
- To analyze how functioning issues at different International Classification of Functioning, Disability and Health (ICF) levels evolve over time.
- To identify patterns of co-occurring functional deficits and environmental barriers impacting participation.
Main Methods:
- Retrospective review of medical and school records for seven children up to 5 years post-treatment.
- Application of ICF code domains to identify and categorize functional problems.
- Statistical analysis and graphical illustration of coded data in six-month intervals over 4 years.
- Case study exemplifying co-occurring body, activity, and environmental codes using a collaborative problem-solving (CPS) approach.
Main Results:
- Children consistently showed problems with body function (median 11-18 codes) throughout the follow-up period.
- Activity-related issues peaked around 1 year post-treatment (median 6 codes), while participation problems (median 1-2 codes) persisted.
- Environmental problem documentation was sparse but increased after 3 years (median 3 codes).
- Case example highlighted ongoing participation issues in self-care, schooling, and peer relations linked to communication, fine motor skills, fatigue, and support systems.
Conclusions:
- Professional documentation frequently neglects everyday functioning and environmental barriers, focusing mainly on body function deficits.
- The ICF framework and CPS approach offer a systematic method for addressing complex, co-occurring functional problems.
- Improved documentation and a holistic approach can enhance support for children's participation in daily life post-brain tumor treatment.
Background:
Children who complete brain tumor treatment encounter ongoing problems with functioning that fluctuate over time. Previous studies shows that health care and schools tend to focus more on the child's cancer-related body symptoms, rather than on existing problems to participate and manage everyday life activities, or moreover of environmental barriers they face. Few studies address how the child's problems to function on body, activity and participation levels co-occur and are presented over time. Therefore, this study´s purpose is to describe how documented problems with functioning, vary over time in children who have completed brain tumor treatment.
Methods:
Medical and school records from seven children were reviewed for up to 5 years after treatment completion, to identify problems and link these to International Classification of Functioning, Disability and Health (ICF) code domains. The coded data were divided into six-month blocks over a 4-year time period, analyzed statistically and illustrated graphically. Code variations on group-levels and patterns of body, activity and environmental codes that tentatively co-occurred with participation were exemplified in a child-case, using a collaborative problem-solving (CPS) approach.
Results:
Based on median (Md) number of codes within participation, activity, body and environment, the children exhibited ongoing problems with body function over time (Md 11-18). Activity-related problems were most noticeable about 1-year post-treatment completion (Md 6), and participation problems (Md 1-2) persisted throughout the follow-up period. Documentation of environmental problems was limited but increased after 3 years (Md 3). In the child-case example, participation problems with self-care, schooling and peer-relations continued across the years, with plausible explanations related to problems with communication and fine-hand function (activity), fatigue (body function) and with surrounding supportive systems (environment).
Conclusion:
Over time, professionals' documentation predominantly focused on problems with the child's body function, while functioning in everyday life and environmental barriers affecting participation, was often neglected. By using the ICF and CPS, service professionals, including nurses, are provided with guidance for comprehensive and systematic approach of addressing patterns of co-occurring problems with functioning, which could lead to improved support to optimize the child's participation in everyday life.
