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Following young children's health and functioning in everyday life through their cancer trajectory
Högskolan i Jönköping, Hälsohögskolan, HHJ. CHILD. University of Borås, Borås, Sweden.
Högskolan i Jönköping, Hälsohögskolan, HHJ, Avd. för omvårdnad. Högskolan i Jönköping, Hälsohögskolan, HHJ. CHILD.ORCID-id: 0000-0001-6419-2417
Högskolan i Jönköping, Hälsohögskolan, HHJ, Avd. för omvårdnad. Högskolan i Jönköping, Hälsohögskolan, HHJ. CHILD.
Högskolan i Jönköping, Hälsohögskolan, HHJ. CHILD. Högskolan i Jönköping, Högskolan för lärande och kommunikation, HLK, CHILD. Högskolan i Jönköping, Hälsohögskolan, HHJ, Avd. för beteendevetenskap och socialt arbete.ORCID-id: 0000-0001-9597-039X
Visa övriga samt affilieringar
2016 (Engelska)Ingår i: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, nr 3, s. 173-189Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Background: Knowledge of living with childhood cancer, through the trajectory, is sparse.

Aim: The aim of this study was to follow young children’s health and functioning in everyday life through their cancer trajectory.

Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis.

Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children’s trajectories in relation to diagnosis but individual patterns were seen for each child.

Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.

Ort, förlag, år, upplaga, sidor
2016. Vol. 33, nr 3, s. 173-189
Nyckelord [en]
Childhood cancer, Sweden, Young child
Nationell ämneskategori
Omvårdnad
Identifikatorer
URN: urn:nbn:se:hj:diva-26384DOI: 10.1177/1043454215610489ISI: 000373837100002PubMedID: 26655332Scopus ID: 2-s2.0-84962691659OAI: oai:DiVA.org:hj-26384DiVA, id: diva2:808316
Forskningsfinansiär
BarndiabetesfondenTillgänglig från: 2015-04-28 Skapad: 2015-04-28 Senast uppdaterad: 2017-12-04Bibliografiskt granskad
Ingår i avhandling
1. The everyday life of young children through their cancer trajectory
Öppna denna publikation i ny flik eller fönster >>The everyday life of young children through their cancer trajectory
2015 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Jönköping: School of Health Sciences, 2015. s. 80
Serie
Dissertation Series. School of Health Sciences, ISSN 1654-3602 ; 58
Nyckelord
Young child, cancer, everyday life, health and functioning, transition
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:hj:diva-26395 (URN)978-91-85835-57-7 (ISBN)
Disputation
2015-06-05, Sparbankssalen, Högskolan i Borås, Allégatan 1, Borås, 13:00 (Engelska)
Opponent
Handledare
Tillgänglig från: 2015-04-29 Skapad: 2015-04-29 Senast uppdaterad: 2019-01-02Bibliografiskt granskad

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Björk, MariaKnutsson, SusanneGranlund, MatsEnskär, Karin

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