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The Art of Age-Appropriate Care: Reflecting on a Conceptual Model of the Cancer Experience for Teenagers and Young Adults

Fern, LA, Taylor, RM, Whelan, J, Pearce, S, Grew, T, Brooman, K, Starkey, C, Millington, H, Ashton, J and Gibson, F (2013) The Art of Age-Appropriate Care: Reflecting on a Conceptual Model of the Cancer Experience for Teenagers and Young Adults Cancer Nursing, 36 (5). e27-e38.

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Abstract

Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. Objective: We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. Methods: Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. Results: Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. Conclusions: The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. Implications for Practice: Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

Item Type: Article
Subjects : Biosciences
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
AuthorsEmailORCID
Fern, LAUNSPECIFIEDUNSPECIFIED
Taylor, RMUNSPECIFIEDUNSPECIFIED
Whelan, JUNSPECIFIEDUNSPECIFIED
Pearce, SUNSPECIFIEDUNSPECIFIED
Grew, TUNSPECIFIEDUNSPECIFIED
Brooman, KUNSPECIFIEDUNSPECIFIED
Starkey, CUNSPECIFIEDUNSPECIFIED
Millington, HUNSPECIFIEDUNSPECIFIED
Ashton, JUNSPECIFIEDUNSPECIFIED
Gibson, FUNSPECIFIEDUNSPECIFIED
Date : September 2013
Identification Number : 10.1097/NCC.0b013e318288d3ce
Copyright Disclaimer : © 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins
Additional Information : Full text not available from this repository.
Depositing User : Symplectic Elements
Date Deposited : 07 Jun 2016 09:41
Last Modified : 07 Jun 2016 09:41
URI: http://epubs.surrey.ac.uk/id/eprint/810924

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