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The BRIGHTLIGHT national survey of the impact of specialist teenage and young adult cancer care on caregivers’ information and support needs

Martins, Ana, Alvarez-Galvez, Javier, Fern, Lorna A., Vindrola-Padros, Cecilia, Barber, Julie A., Gibson, Faith, Whelan, Jeremy S. and Taylor, Rachel M. (2019) The BRIGHTLIGHT national survey of the impact of specialist teenage and young adult cancer care on caregivers’ information and support needs CANCER NURSING.

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Abstract

Teenage and young adult cancer services in England are centralised in 13 principal treatment centres (TYA-PTC). These ‘specialist services’ are designed to support caregivers as well as young people. Objectives: We sought to evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC. Methods: Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed six months after diagnosis. Comparisons were made according to where young people’s care was delivered: all, some or no care in a TYA-PTC. Principal component analysis reduced the questionnaire to five dimensions, which were used as dependent variables in subsequent regression analysis. Results: Four hundred and seventy-six responses out of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions. Conclusions: Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs. Implications for Practice: Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals nurses need optimise opportunities for caregivers to be involved in decision-making.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
NameEmailORCID
Martins, Ana
Alvarez-Galvez, Javier
Fern, Lorna A.
Vindrola-Padros, Cecilia
Barber, Julie A.
Gibson, Faithf.gibson@surrey.ac.uk
Whelan, Jeremy S.
Taylor, Rachel M.
Date : 8 August 2019
Depositing User : James Marshall
Date Deposited : 11 Feb 2020 13:52
Last Modified : 09 Aug 2020 02:08
URI: http://epubs.surrey.ac.uk/id/eprint/853717

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