Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women’s experiences

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.

A mixed‐methods study to explore the supportive care needs of breast cancer survivors

“…The qualitative findings converge with results yielded from the quantitative study. Congruent with previous research, the reported unmet needs are mostly related to information provision as well as accessibility and continuity of care . Our findings also corroborate the results of a systematic review, which indicated that cancer patients continued to need information about treatment and about recovery during the posttreatment period .…”

“…In line with previous literature, our findings suggest that not all cancer patients are alike in their need for information and some patients may prefer not to be informed . In this respect, personalized needs assessment and provision of customized information are warranted . A few of the women raised concerns over financial barriers incurred by the additional costs associated with long‐term follow‐up and/or endocrine therapy, as well as decreased capability at work.…”

“…The themes of “continuity of care” and “lifestyle advice and self‐management” were shown to identify the needs of continuous care and information from health care professionals beyond medical consultations and surveillance, so as to support the transition to out‐patient care and the self‐management of symptoms, health, and daily tasks at home. As indicated by a previous study by Tompkins et al, women may feel abandoned due to a diminution in the care and attention they receive in the posttreatment period compared with that received in the diagnostic and adjuvant treatment periods. In addition, the perceived lack of continuity of care may engender anxiety about the cancer spreading and the future for some women.…”

“…Some women in the qualitative study suggested that home‐based and e‐health would be a viable option for a more feasible survivorship program to address their posttreatment needs. This recommendation may be aligned with the concept of self‐management, in particular for those who are at low risk of recurrence and are proactive, independent and computer literate …”

Stress, coping strategies and expectations among breast cancer survivors in China: a qualitative study

“…In the existing qualitative researches, 6–8 focus groups are generally included, with 6–8 participants in each group [ 28 , 29 ]. In this study, 8 focus groups were included with 8 participants in each group.…”