Open AccessFinding Your Way When You Have Metastatic Breast Cancer: Codesigning Resources With Consumers for Consumers. The Signpost Study
Author(s) -
Catherine Devereux,
P. Salamanca,
Richard Y. Lam,
Natasha Moloczij,
Meinir Krishnasamy
Publication year - 2018
Publication title -
journal of global oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.002
H-Index - 17
ISSN - 2378-9506
DOI - 10.1200/jgo.18.93600
Subject(s) - nonprobability sampling , resource (disambiguation) , medicine , breast cancer , relevance (law) , nursing , variety (cybernetics) , health care , qualitative research , metastatic breast cancer , knowledge management , family medicine , cancer , population , computer science , environmental health , sociology , political science , social science , computer network , artificial intelligence , law
Background: In Australia, women with metastatic breast cancer are not systematically made aware of or helped to access supportive care resources. Finding resources tailored to their needs can be challenging as they spread across several healthcare and advocacy organizations. Furthermore, resources assume varying levels of knowledge about the disease and its treatments, are fragmented and are dispersed across multiple organizations. Aim: The aim of our study was to codesign a signpost resource to direct women to key supportive care organizations that provide relevant, timely and comprehensive support for them; ensure women are made aware of and know how to access support they need, as and when they need it; and ensure that health professionals are aware of the resource, support its use, and distribute it to women. Methods: Using a codesign framework, initial development of the resource was guided by consumer representation on the study Steering Group. The resource was then presented to women living with metastatic breast cancer, and their advice obtained about its relevance and functionality during semistructured interviews. Purposive sampling based on age, time since diagnosis and geographical location (metro/regional), was used to obtain a variety of perspectives. Open-ended questions explored what the resource should contain, look like, and how it could best be introduced and distributed. An iterative descriptive analytical approach was applied. Results: Seven women aged 40-61 years were interviewed. Time since their metastatic breast cancer diagnosis ranged from 5 months to 19 years. Women told us about their preferences for style, content and format for the resource. They also guided discussion about how best to promote the resources in a way that both informed health professionals but also empowered women to find and express a need for support. As a result, 2 videos were produced. In the first 3-minute video for health professionals, consumers powerfully convey messages about the impact of their diagnosis, their need for support and how important it is for health professionals to “value and believe there are emotional, social and material aspects of coping with the disease” (this video will be shared in the presentation). In the second 4-minute video, consumers endorse the need for information and support, and women and consumers watching the video are introduced to the services provided by supportive care organizations profiled on the resource. Conclusion: Resources created and tailored by consumers for consumers are powerful and important. Consumer-led interventions that demonstrate to health professionals the importance of supportive care as a cornerstone of excellent cancer care may have a considerable impact but require empirical testing.