Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer – a multicentred study

Jolliffe, R., Collaco, N., Seers, H., Farrell, C., Sawkins, M.J. and Polley, M.J. 2019. Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer – a multicentred study. Supportive Care in Cancer. 27 (5), pp. 1901-1909. https://doi.org/10.1007/s00520-018-4422-8

TitleDevelopment of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer – a multicentred study
TypeJournal article
AuthorsJolliffe, R.
Collaco, N.
Seers, H.
Farrell, C.
Sawkins, M.J.
Polley, M.J.
Abstract

Purpose: Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group.

Methods: This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns.
Results: Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections; 1. ‘informal caregiver concerns for self’ and 2. ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content.
Conclusions: This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.

KeywordsSupporter; carers; cancer, MYCaW, concerns, person centred, long term conditions, informal caregiver
JournalSupportive Care in Cancer
Journal citation27 (5), pp. 1901-1909
ISSN0941-4355
Year2019
PublisherSpringer
Publisher's version
Digital Object Identifier (DOI)https://doi.org/10.1007/s00520-018-4422-8
Publication dates
Published online11 Sep 2018
Published in printMay 2019
LicenseCC BY-NC 4.0

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