title: Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
abstract: 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. 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.
  
  
  
  A 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.
  
  
  
  Sixty-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.
  
  
  
  There 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.
authors.affiliation: Breast Cancer Care, 5-13 Great Suffolk Street, London, SE1 0NS, UK.
authors.forename: Charlotte
authors.initials: C
authors.lastname: Tompkins
authors.affiliation: Breast Cancer Care, 5-13 Great Suffolk Street, London, SE1 0NS, UK. karen.scanlon@breastcancercare.org.uk.
authors.forename: Karen
authors.initials: K
authors.lastname: Scanlon
authors.affiliation: King's College London, Florence Nightingale Faculty of Nursing & Midwifery, James Clerk Maxwell Building, 57 Waterloo Road, London, SE1 8WA, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Scott
authors.affiliation: School of Health Sciences, Faculty of Health & Medical Sciences, University of Surrey, Duke of Kent Building, Guildford, GU2 7XH, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Ream
authors.affiliation: King's College London, Diabetes & Nutritional Sciences Division, Franklin-Wilkins Building, 150 Stamford Street, London, SE1 9NH, UK.
authors.forename: Seeromanie
authors.initials: S
authors.lastname: Harding
authors.affiliation: King's College London, Florence Nightingale Faculty of Nursing & Midwifery, James Clerk Maxwell Building, 57 Waterloo Road, London, SE1 8WA, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Armes
mesh_terms: D000328:Adult; D000359:Aftercare; D000368:Aged; D001943:Breast Neoplasms / Q000208:ethnology / Q000401:mortality / Q000628:therapy*; D004739:England / Q000453:epidemiology; D005006:Ethnicity / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D008875:Middle Aged; D009364:Neoplasm Recurrence, Local / Q000401:mortality; D017060:Patient Satisfaction; D036301:Qualitative Research; D012648:Self Care; D012944:Social Support; D015996:Survival Rate; D017741:Survivors / Q000523:psychology; D014852:Wales / Q000453:epidemiology
keywords: Aftercare; Breast cancer; Follow-up; Multi-ethnic; Qualitative; Survivorship care