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Publications (3 of 3) Show all publications
Svedberg, P., Einberg, E.-L., Wärnestål, P., Stigmar, J., Castor, A., Enskär, K. & Nygren, J. (2016). Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer. European Journal of Oncology Nursing, 21, 105-112
Open this publication in new window or tab >>Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer
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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 (Refereed) 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. © 2016 Elsevier Ltd.

Place, publisher, year, edition, pages
London: Elsevier, 2016
Keywords
Pediatric, cancer, survivor, experience, transition
National Category
Nursing Cancer and Oncology
Identifiers
urn:nbn:se:hh:diva-30522 (URN)10.1016/j.ejon.2016.02.008 (DOI)000373412200014 ()26952685 (PubMedID)2-s2.0-84958775381 (Scopus ID)
Funder
Swedish Research CouncilKnowledge FoundationSwedish Research Council Formas
Note

This study was supported by grants to J.M.N from the Swedish Childhood Cancer Foundation, the Swedish Research Council, the Knowledge Foundation, the Swedish Research Council Formas.

Available from: 2016-03-15 Created: 2016-03-15 Last updated: 2017-11-30Bibliographically approved
Einberg, E.-L., Nygren, J. M., Svedberg, P. & Enskär, K. (2014). 'Through my eyes': children with experience of cancer describing through photography what promotes their health. In: Health Promotion Research - An International Forum <<Next Health>>, August 25-27,  2014, Trondheim, Norway: . Paper presented at Health Promotion Research - An International Forum <>, Trondheim, Norway, August 25-27, 2014 (pp. 33-33). Trondheim: Senter for helsefremmende forskning HiST/NTNU
Open this publication in new window or tab >>'Through my eyes': children with experience of cancer describing through photography what promotes their health
2014 (English)In: Health Promotion Research - An International Forum <<Next Health>>, August 25-27,  2014, Trondheim, Norway, Trondheim: Senter for helsefremmende forskning HiST/NTNU , 2014, p. 33-33Conference paper, Oral presentation with published abstract (Refereed)
Place, publisher, year, edition, pages
Trondheim: Senter for helsefremmende forskning HiST/NTNU, 2014
Series
Rapportserie fra Senter for helsefremmende forskning HiST/NTNU, ISSN 1892-6207 ; Rapport 2014/03
National Category
Health Sciences
Identifiers
urn:nbn:se:hh:diva-26348 (URN)978-82-93158-23-3 (ISBN)
Conference
Health Promotion Research - An International Forum <>, Trondheim, Norway, August 25-27, 2014
Available from: 2014-09-01 Created: 2014-09-01 Last updated: 2016-02-24Bibliographically approved
Einberg, E.-L., Svedberg, P., Wärnestål, P., Thomsen, M., Stigmar, J., Enskär, K., . . . Nygren, J. (2012). Participatory innovation process for development of a digital peer support service for children with cancer. In: SIOP Publication Abstracts: . Paper presented at 44th Congress of the International Society of Paediatric Oncology, London, United Kingdom, October 5-8, 2012 (pp. 88-88). Hoboken, NJ: John Wiley & Sons
Open this publication in new window or tab >>Participatory innovation process for development of a digital peer support service for children with cancer
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2012 (English)In: SIOP Publication Abstracts, Hoboken, NJ: John Wiley & Sons, 2012, p. 88-88Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Purpose: Surviving cancer during childhood imposes a number of difficulties later in life. Peer support has been recognised as an important contributor to health and well-being but empirical evidence that could guide development of peer support programs for school aged children is scarce. The process presented here is focused on generic exploration of children’s needs and expectations related to peer support innovations to promote health and wellbeing of children with cancer. The purpose of this study is to establish a participatory innovation process that grasps the underlying behaviours and goals of children that will affect the design of a digital peer support service.

Methods: Focus group interview is a child-friendly technique that promotes participation and access to children’s perspectives, insights and experiences related to their health. Healthy children 8–12 years of age were recruited from a local elementary school. Focus groups (n = 5 groups) were carried out in two sessions for each group (n = 4 children per group) with an interval of 1–2 weeks. Adjustments were made between each focus group to adapt the meeting structure to a level commensurate with the children’s experience, age and abilities and to focus discussions on innovation incentives related to a digital peer support service.

Results: The adaptation process involved adjustments of the focus group structure to match children in the selected age group and to the aims of the innovation process. A mixture of informative and creative techniques (open questions, brainstorming, drawing, photography) assisted the children in talking and expressing themselves. The children were pleased to participate and wanted to meet again in this kind of study group. The adapted focus group sessions are now being used in the research and innovation process with children (8–12 yrs) with experience of cancer treatment.

Conclusion: The final focus group structure capture children’s perspectives for the design of a digital peer support service.

Place, publisher, year, edition, pages
Hoboken, NJ: John Wiley & Sons, 2012
Series
Pediatric Blood & Cancer, ISSN 1545-5017
Keywords
children, cancer, peer support, participatory design, innovation
National Category
Health Sciences Nursing
Identifiers
urn:nbn:se:hh:diva-19821 (URN)
Conference
44th Congress of the International Society of Paediatric Oncology, London, United Kingdom, October 5-8, 2012
Available from: 2012-10-10 Created: 2012-10-10 Last updated: 2015-09-21Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-8596-6020

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