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The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis
Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Sciences, University of Skövde, Skövde, Sweden.ORCID iD: 0000-0001-6419-2417
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.
2014 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, 605-612 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis.

METHODS: Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out.

RESULTS: The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described.

CONCLUSION: Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

Place, publisher, year, edition, pages
2014. Vol. 18, no 6, 605-612 p.
Keyword [en]
Childhood cancer; Everyday life; Striving; Sweden; Young child
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-24389DOI: 10.1016/j.ejon.2014.06.006ISI: 000346222800010PubMedID: 24997519Scopus ID: 2-s2.0-84912009717OAI: oai:DiVA.org:hj-24389DiVA: diva2:739747
Available from: 2014-08-21 Created: 2014-08-21 Last updated: 2016-11-24Bibliographically 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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