Abstract
BackgroundAs the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. New models of survivorship care need to ensure they support self-management and are culturally appropriate across diverse populations. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care.MethodsA phenomenological qualitative research design was employed. In-depth interviews were conducted with women from diverse socio-demographic backgrounds in England, who completed treatment for breast cancer in the 12 months prior to the study. Data were analysed using Framework Analysis.ResultsSixty-six women participated and reported expectations and needs were unmet at follow-up. Whilst there were more commonalities in experiences, discernible differences, particularly by ethnicity and age, were identified relating to three key themes: emotional responses on transition to follow-up; challenges communicating with healthcare professionals at follow-up; and challenges finding and accessing information and support services to address unmet needs.ConclusionsThere are cultural differences in the way healthcare professionals and women communicate, not necessarily differences in their post-treatment needs. We do not know if new models of care meet survivors’ needs, or if they are appropriate for everyone. Further testing and potential cultural and linguistic adaptation of models of care is necessary to ensure their appropriateness and acceptability to survivors from different backgrounds. New ways of providing survivorship care mean survivors will need to be better prepared for the post-treatment period and the role they will have to play in managing their symptoms and care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1625-x) contains supplementary material, which is available to authorized users.
Highlights
As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable
What information and support services have you used to address your needs since you finished breast cancer treatment, including those from NHS and other statutory service providers, and from other providers? Who provided, when, and where? What do you think about the support that the hospital provided you about life after breast cancer treatment? What other support would you like to be available to patients following treatment to help them adjust/ cope with the physical and emotional impact? Who should deliver it, how and when?
As we found similar patient responses from all but one geographical location, which included: identifying emotional response on transition to follow-up; challenges communicating with healthcare professional (HCP) at follow-up; and challenges finding and accessing information and support services to address unmet needs, this means we can have greater confidence in the findings, as they were not derived from just one locality
Summary
As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care. Whilst the number of breast cancer survivors in England is increasing and is expected to double from two million in 2010 to four million by 2030 [3], the socio-demographic profile of these survivors is changing. The White ethnic group is the largest ethnic group in England and Wales but has decreased over the last two decades, whilst minority ethnic groups have more than doubled in size [5, 6] (See Table 1). The Asian/Asian British ethnic groups saw some of the largest increases between the 2001 and 2011 Censuses [5] and the African ethnic group has grown faster than any other minority group over the past two decades [6]
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