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Darcy, Laura
Publications (6 of 6) Show all publications
Darcy, L., Enskär, K. & Björk, M. (2019). Young children's experiences of living an everyday life with cancer – A three year interview study. European Journal of Oncology Nursing, 39, 1-9
Open this publication in new window or tab >>Young children's experiences of living an everyday life with cancer – A three year interview study
2019 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 1-9Article in journal (Refereed) Published
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, 2019
Keywords
Childhood cancer, Everyday life, Young child, Longitudinal
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:hj:diva-42409 (URN)10.1016/j.ejon.2018.12.007 (DOI)000462419500001 ()30850132 (PubMedID)2-s2.0-85059446147 (Scopus ID)
Available from: 2019-01-02 Created: 2019-01-02 Last updated: 2019-04-11Bibliographically 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:hj:diva-41962 (URN)10.4324/9781315519692 (DOI)2-s2.0-85050297818 (Scopus ID)9781315519685 (ISBN)9781138698178 (ISBN)
Available from: 2018-11-02 Created: 2018-11-02 Last updated: 2019-01-02Bibliographically approved
Darcy, L. (2015). The everyday life of young children through their cancer trajectory. (Doctoral dissertation). Jönköping: School of Health Sciences
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. p. 80
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 58
Keywords
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: 2019-01-02Bibliographically 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
Show others...
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:hj:diva-25491 (URN)10.4172/2167-1168.1000217 (DOI)
Available from: 2015-01-03 Created: 2015-01-03 Last updated: 2018-04-23Bibliographically approved
Darcy, L., Knutsson, S., Huus, K. & Enskär, K. (2014). The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives. Cancer Nursing, 37(6), 445-456
Open this publication in new window or tab >>The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives
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.

National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-23047 (URN)10.1097/NCC.0000000000000114 (DOI)000344272400011 ()24406380 (PubMedID)2-s2.0-84927794971 (Scopus ID)
Available from: 2014-01-11 Created: 2014-01-11 Last updated: 2017-12-06Bibliographically approved
Darcy, L., Björk, M., Enskär, K. & Knutsson, S. (2014). The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis. European Journal of Oncology Nursing, 18(6), 605-612
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.

Keywords
Childhood cancer; Everyday life; Striving; Sweden; Young child
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-24389 (URN)10.1016/j.ejon.2014.06.006 (DOI)000346222800010 ()24997519 (PubMedID)2-s2.0-84912009717 (Scopus ID)
Available from: 2014-08-21 Created: 2014-08-21 Last updated: 2017-12-05Bibliographically approved
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