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Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer
School of Health and Welfare, Halmstad University, Halmstad, Sweden.
Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Health and Welfare, Halmstad University, Halmstad, Sweden.
School of Information Technology, Halmstad University, Halmstad, Sweden.
Department of Pediatrics, Skåne University Hospital, Lund, Sweden.
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2016 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 105-112Article in journal (Other academic) Published
Abstract [en]

PURPOSE:

Improved survival rates of pediatric cancer have drawn attention on how to best facilitate long-term follow up and transition from pediatric to adult care. The transition process is multifactorial and necessitates the joint involvement of the patient, the family and the healthcare providers. The purpose of this study was to explore the experiences of support from healthcare services during the transition from adolescence to adulthood described by young adult survivors of pediatric cancer.

METHODS:

A mixed method with a convergent parallel design was used to evaluate the experiences of receiving support from healthcare services (eg pediatric oncology and pediatric clinic) during transition from adolescence to adulthood described by young adult survivors of pediatric cancer (n = 213) in a nation wide cross-sectional survey.

RESULTS:

A quantitative assessment of the experienced extent and satisfaction of support from healthcare services to handle physical, mental and social changes to continue life after the disease showed that a majority of the participants had received insufficient support. The qualitative analysis indicated a need for equal roles in healthcare to promote participation, a need to manage and process consequences of the disease, and a need for continuous support.

CONCLUSIONS:

During transition to adulthood, there's a need for a personalized care plan that takes a holistic approach towards supporting the young cancer survivor in managing life in the best way. Identifying and handling the individual needs of pediatric cancer survivors is important for providing the resources and support required to increase the likelihood of successful transition to adulthood.

Place, publisher, year, edition, pages
Elsevier, 2016. Vol. 21, p. 105-112
Keywords [en]
Cancer; Experience; Pediatric; Survivor; Transition
National Category
Cancer and Oncology Nursing
Identifiers
URN: urn:nbn:se:hj:diva-28676DOI: 10.1016/j.ejon.2016.02.008ISI: 000373412200014PubMedID: 26952685Scopus ID: 2-s2.0-84958775381OAI: oai:DiVA.org:hj-28676DiVA, id: diva2:885094
Available from: 2015-12-18 Created: 2015-12-18 Last updated: 2019-01-09Bibliographically approved
In thesis
1. To promote health in children with experience of cancer treatment
Open this publication in new window or tab >>To promote health in children with experience of cancer treatment
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to develop knowledge about how to promote health in children treated for cancer and how health promotion interventions based on such knowledge can be evaluated. In this thesis, a descriptive and explorative design has been used, comprising both qualitative (Papers I-III) and quantitative (Papers I and IV) methods. A nationwide cohort of 144 childhood cancer survivors (24-42 years) answered a questionnaire about the support they had received from health care services (Paper I). Fifteen children (8-12years), with experience of cancer treatment, participated in five focus groups with two sessions per group (Paper II and III). The focus group methodology was combined with participatory and art-based techniques, such as draw and tell and photography. The children discussed what promotes health and what friendship is about. A methodological design was used to psychometrically test the Swedish version of the Minneapolis-Manchester Quality of Life instrument (MMQL) (Paper IV). The study included 950 pupils in grade 6 and 9 from seven primary schools. In addition to this, a comparison of the MMQL instrument with the health-promoting factors described by children in the focus groups was performed.

The findings showed that there is a need for health-promoting factors, such as knowledge and psychosocial support, from health care services for childhood cancer survivors. Their family and friends may contribute with support and then serve as health-promoting factors. Health-promoting factors, according to children 8-12 years of age and with experience of cancer treatment, are meaningful relationships, recreational activities and a trustful environment. The children expressed a holistic view of what promotes their health. Friendship, from the perspective of the children, is a process of equal and mutual commitment that develops over time and with interactions occurring face-to-face and digitally. The MMQL instrument may be valid and reliable in a sample of healthy children. However, less than one-third of the items in the MMQL instrument could be linked to the health-promoting factors that the children participating in the focus groups highlighted. In conclusion, the findings in this thesis contribute knowledge from a participant perspective regarding the needs and the experiences of health-promoting factors for those who have received treatment for cancer. This knowledge could form a basis for development of health promotion interventions aimed at children who have received treatment for cancer. It is suggested that if the MMQL instrument is used to evaluate health promotion among children who have received treatment for cancer, the MMQL should be complemented with items that capture aspects of health that are important to the children.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2016. p. 95
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 66
Keywords
Children, cancer, health promotion, nursing, focus group, photography, questionnaire, validity, reliability
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-28677 (URN)978-91-85835-65-2 (ISBN)
Public defence
2016-01-28, Forum Humanum, Hälsohögskolan i Jönköping, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-12-18 Created: 2015-12-18 Last updated: 2015-12-18Bibliographically approved

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Einberg, Eva-LenaEnskär, Karin

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