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Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability & Health – Children & Youth (ICF-CY)
University of Borås, School of Health Science. (CHILD, Jönköping University)
(CHILD, Jönköping University)
(CHILD, Jönköping University)
(CHILD, Jönköping University)
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2014 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214Article in journal (Refereed)
Sustainable development
The content falls within the scope of Sustainable Development
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.

Place, publisher, year, edition, pages
Wiley-Blackwell Publishing Ltd. , 2014.
National Category
Medical and Health Sciences Cancer and Oncology
Research subject
Integrated Caring Science
Identifiers
URN: urn:nbn:se:hb:diva-1903DOI: 10.1111/cch.12191Local ID: 2320/14138OAI: oai:DiVA.org:hb-1903DiVA: diva2:869981
Note

Sponsorship:

Barncancerfonden

Available from: 2015-11-13 Created: 2015-11-13 Last updated: 2015-12-21
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
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-120 (URN)978-91-85835-57-7 (ISBN)
Public defence
2015-06-05, Sparbankssalen, Borås, 13:00 (English)
Opponent
Supervisors
Available from: 2015-05-29 Created: 2015-05-26 Last updated: 2015-12-21Bibliographically approved

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