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Darcy, L., Enskär, K. & Björk, M. (2018). Young children's experiences of living an everyday life with cancer – A three year interview study. European Journal of Oncology Nursing
Open this publication in new window or tab >>Young children's experiences of living an everyday life with cancer – A three year interview study
2018 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose

The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

Method

This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

Results

The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

Conclusions

Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Childhood cancer, Everyday life, Young child, Longitudinal
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:hb:diva-15594 (URN)10.1016/j.ejon.2018.12.007 (DOI)
Available from: 2019-01-02 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Darcy, L., Björk, M., Granlund, M. & Enskär, K. (2017). ICF applications in health care for children with cancer in Sweden. In: S. Castro & O. Palikara (Ed.), An emerging approach for education and care: Implementing a worldwide classification of functioning and disability (pp. 178-186). London: Routledge
Open this publication in new window or tab >>ICF applications in health care for children with cancer in Sweden
2017 (English)In: An emerging approach for education and care: Implementing a worldwide classification of functioning and disability / [ed] S. Castro & O. Palikara, London: Routledge , 2017, p. 178-186Chapter in book (Refereed)
Abstract [en]

The International Classification of Functioning, Disability and Health (ICF) and its version for children and youth, the ICF-CY, can contribute to the present knowledge on the lives of young children with cancer, with an international and interdisciplinary language. In this context, the term health can be seen as a multidimensional concept in which both illness and non-illness/well-being are dimensions that can be present at the same time, rather than two opposite concepts. Health is the result of a continuous process rather than something that one individual has; it is a resource for everyday life rather than the objective of living (WHO, 1986). The ICF was developed to classify different dimensions on individuals’ health as a unified standardised common language and framework, to be used across disciplines (WHO, 2007). It acknowledges that health and illness are complex concepts and promotes a biopsychosocial model of health, in which the context is as important as the individual and his/her needs. The view of health as functioning in everyday life can be operationalised using the ICF model of body structure, body function, activities and participation and environmental factors (Rosenbaum & Gorter, 2012).

Place, publisher, year, edition, pages
London: Routledge, 2017
National Category
Educational Sciences Medical and Health Sciences
Identifiers
urn:nbn:se:hb:diva-15596 (URN)10.4324/9781315519692 (DOI)2-s2.0-85050297818 (Scopus ID)9781315519685 (ISBN)9781138698178 (ISBN)
Available from: 2018-11-02 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Darcy, L., Björk, M., Knutsson, S., Granlund, M. & Enskär, K. (2016). Following young children's health and functioning in everyday life through their cancer trajectory. Journal of Pediatric Oncology Nursing, 33(3), 173-189
Open this publication in new window or tab >>Following young children's health and functioning in everyday life through their cancer trajectory
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2016 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 3, p. 173-189Article in journal (Refereed) 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.

Keywords
Childhood cancer, Sweden, Young child
National Category
Nursing
Identifiers
urn:nbn:se:hb:diva-15595 (URN)10.1177/1043454215610489 (DOI)000373837100002 ()26655332 (PubMedID)2-s2.0-84962691659 (Scopus ID)
Funder
Swedish Child Diabetes Foundation
Available from: 2015-04-28 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Enskär, K., Huus, K., Björk, M., Granlund, M., Darcy, L. & Knutsson, S. (2015). An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology. Journal of Pediatric Nursing: Nursing Care of Children and Families, 30(4), 550-559
Open this publication in new window or tab >>An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology
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2015 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 4, p. 550-559Article in journal (Refereed) Published
National Category
Nursing
Identifiers
urn:nbn:se:hb:diva-15590 (URN)10.1016/j.pedn.2014.11.001 (DOI)000356182300007 ()25448474 (PubMedID)2-s2.0-84930808995 (Scopus ID)
Available from: 2014-12-17 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Enskär, K., Knutsson, S., Huus, K., Granlund, M., Darcy, L. & Björk, M. (2014). A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology. Journal of Nursing & Care, 3(6), 1-8
Open this publication in new window or tab >>A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology
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2014 (English)In: Journal of Nursing & Care, ISSN 2167-1168, Vol. 3, no 6, p. 1-8Article, review/survey (Refereed) Published
Abstract [en]

The body of research-based knowledge in paediatric caring science has been increasing leading to dramaticimprovements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', inrecently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. Thiswas done through a review of 137 published articles about paediatric oncology related to caring science in Sweden.The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone cominginto contact with the child. The cancer also causes distress related to all aspects of life including physical,psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease andtreatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and externalsupport, and the identity of the person reporting the data. Health promoting aspects frequently reported are: familytogetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotionalsupport, information and family participation in care. The hospital staff has to be aware of the psychosocial issuesexperienced by children with cancer and their families, and they have to acknowledge the value of formalinterventions, reporting benefits for children, families, and themselves.

National Category
Medical and Health Sciences Nursing
Identifiers
urn:nbn:se:hb:diva-15589 (URN)10.4172/2167-1168.1000217 (DOI)
Available from: 2019-01-03 Created: 2019-01-03 Last updated: 2019-01-03
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-6419-2417

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