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The everyday life of young children through their cancer trajectory
University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Högskolan i Jönköping, HHJ. CHILD.
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. , p. 80
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 58
Keywords [en]
Young child, cancer, everyday life, health and functioning, transition
National Category
Nursing
Research subject
Människan i vården
Identifiers
URN: urn:nbn:se:hb:diva-120ISBN: 978-91-85835-57-7 (print)OAI: oai:DiVA.org:hb-120DiVA, id: diva2:814330
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
List of papers
1. The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis
Open this publication in new window or tab >>The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis
2014 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 605-612Article 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
Churchill Livingstone, 2014
National Category
Medical and Health Sciences Cancer and Oncology
Research subject
Integrated Caring Science
Identifiers
urn:nbn:se:hb:diva-1902 (URN)10.1016/j.ejon.2014.06.006 (DOI)2320/14135 (Local ID)2320/14135 (Archive number)2320/14135 (OAI)
Available from: 2015-11-13 Created: 2015-11-13 Last updated: 2017-12-01Bibliographically approved
2. 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)
Open this publication in new window or tab >>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)
Show others...
2014 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, p. 475-482Article 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.

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:nbn:se:hb:diva-1903 (URN)10.1111/cch.12191 (DOI)2320/14138 (Local ID)2320/14138 (Archive number)2320/14138 (OAI)
Funder
Swedish Childhood Cancer Foundation
Note

Sponsorship:

Barncancerfonden

Available from: 2015-11-13 Created: 2015-11-13 Last updated: 2017-10-17Bibliographically approved
3. The everyday life of the young child shortly after receiving a cancer diagnosis
Open this publication in new window or tab >>The everyday life of the young child shortly after receiving a cancer diagnosis
2014 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 6, p. 445-456Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life. OBJECTIVE:: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis. METHODS:: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis. RESULTS:: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated. CONCLUSIONS:: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being. IMPLICATIONS FOR PRACTICE:: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2014
Keywords
experiences, childhood cancer, barnsjukvård
National Category
Nursing
Research subject
Integrated Caring Science
Identifiers
urn:nbn:se:hb:diva-1783 (URN)10.1097/NCC.0000000000000114 (DOI)000344272400011 ()24406380 (PubMedID)2320/13251 (Local ID)2320/13251 (Archive number)2320/13251 (OAI)
Funder
Swedish Childhood Cancer FoundationSwedish Childhood Cancer Foundation
Available from: 2015-11-13 Created: 2015-11-13 Last updated: 2017-10-17Bibliographically approved

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