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The everyday life of young children through their cancer trajectory
Jönköping University, School of Health Science, 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. , 80 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 58
Keyword [en]
Young child, cancer, everyday life, health and functioning, transition
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-26395ISBN: 978-91-85835-57-7 (print)OAI: oai:DiVA.org:hj-26395DiVA: diva2:808814
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
List of papers
1. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives
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, 445-456 p.Article 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: 2015-12-15Bibliographically approved
2. 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, 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.

Keyword
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: 2016-11-24Bibliographically approved
3. Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health - Children and 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 and Health - Children and Youth (ICF-CY).
Show others...
2015 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, 475-482 p.Article 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.

CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-25101 (URN)10.1111/cch.12191 (DOI)000352790500016 ()25219405 (PubMedID)2-s2.0-84927056502 (Scopus ID)
Available from: 2014-11-04 Created: 2014-11-04 Last updated: 2016-03-03Bibliographically approved
4. Following young children's health and functioning in everyday life through their cancer trajectory
Open this publication in new window or tab >>Following young children's health and functioning in everyday life through their cancer trajectory
Show others...
2016 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 3, 173-189 p.Article 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.

Keyword
Childhood cancer, Sweden, Young child
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-26384 (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: 2015-04-28 Last updated: 2016-11-30Bibliographically approved

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