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Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).
Institution of Health Science, University College Borås.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.ORCID iD: 0000-0001-9597-039X
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2015 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, 475-482 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).

AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment.

METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures.

RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

Place, publisher, year, edition, pages
2015. Vol. 41, no 3, 475-482 p.
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-25101DOI: 10.1111/cch.12191ISI: 000352790500016PubMedID: 25219405Scopus ID: 2-s2.0-84927056502OAI: oai:DiVA.org:hj-25101DiVA: diva2:760732
Available from: 2014-11-04 Created: 2014-11-04 Last updated: 2016-03-03Bibliographically approved
In thesis
1. The everyday life of young children through their cancer trajectory
Open this publication in new window or tab >>The everyday life of young children through their cancer trajectory
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care.

The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories.

In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors.

They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being.

Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.

Place, publisher, year, edition, pages
Jönköping: School of Health Sciences, 2015. 80 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 58
Keyword
Young child, cancer, everyday life, health and functioning, transition
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-26395 (URN)978-91-85835-57-7 (ISBN)
Public defence
2015-06-05, Sparbankssalen, Högskolan i Borås, Allégatan 1, Borås, 13:00 (English)
Opponent
Supervisors
Available from: 2015-04-29 Created: 2015-04-29 Last updated: 2015-04-29Bibliographically approved

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