title: Understanding the role of embarrassment in gynaecological screening: a qualitative study from the ASPIRE cervical cancer screening project in Uganda.
abstract: OBJECTIVE
  To define embarrassment and develop an understanding of the role of embarrassment in relation to cervical cancer screening and self-collected human papillomavirus (HPV) DNA testing in Uganda.
  
  
  METHODS
  Cross-sectional, qualitative study using semistructured one-to-one interviews and focus groups.
  
  
  METHODS
  6 key-informant health workers and 16 local women, purposively sampled. Key informant inclusion criteria: Ugandan members of the project team. Focus group inclusion criteria: woman age 30-69 years, Luganda or Swahili speaking, living or working in the target Ugandan community.
  
  
  METHODS
  unwillingness to sign informed consent.
  
  
  METHODS
  Primary and tertiary low-resource setting in Kampala, Uganda.
  
  
  RESULTS
  In Luganda, embarrassment relating to cervical cancer is described in two forms. 'Community embarrassment' describes discomfort based on how a person may be perceived by others. 'Personal embarrassment' relates to shyness or discomfort with her own genitalia. Community embarrassment was described in themes relating to place of study recruitment, amount of privacy in dwellings, personal relationship with health workers, handling of the vaginal swab and misunderstanding of HPV self-collection as HIV testing. Themes of personal embarrassment related to lack of knowledge, age and novelty of the self-collection swab. Overall, embarrassment was a barrier to screening at the outset and diminished over time through education and knowledge. Fatalism regarding cervical cancer diagnosis, worry about results and stigma associated with a cervical cancer diagnosis were other psychosocial barriers described. Overcoming psychosocial barriers to screening can include peer-to-peer education, drama and media campaigns.
  
  
  CONCLUSIONS
  Embarrassment and other psychosocial barriers may play a large role at the onset of a screening programme, but over time as education and knowledge increase, and the social norms around screening evolve, its role diminishes. The role of peer-to-peer education and community authorities on healthcare cannot be overlooked and can have a major impact in overcoming psychosocial and social barriers to screening.
authors.affiliation: Department of Obstetrics and Gynecology, University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Flora F
authors.initials: FF
authors.lastname: Teng
authors.forename: Sheona M
authors.initials: SM
authors.lastname: Mitchell
authors.forename: Musa
authors.initials: M
authors.lastname: Sekikubo
authors.forename: Christine
authors.initials: C
authors.lastname: Biryabarema
authors.forename: Josaphat K
authors.initials: JK
authors.lastname: Byamugisha
authors.forename: Malcolm
authors.initials: M
authors.lastname: Steinberg
authors.forename: Deborah M
authors.initials: DM
authors.lastname: Money
authors.forename: Gina S
authors.initials: GS
authors.lastname: Ogilvie
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D004279:DNA, Viral / Q000032:analysis; D055088:Early Detection of Cancer / Q000523:psychology*; D004644:Emotions; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D027383:Papillomaviridae / Q000235:genetics; D030361:Papillomavirus Infections / Q000175:diagnosis*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D036301:Qualitative Research; D012648:Self Care; D014454:Uganda; D002583:Uterine Cervical Neoplasms / Q000175:diagnosis*
chemical_list: D004279:DNA, Viral
keywords: Public Health
references.citation: Fam Pract. 2012 Aug;29(4):462-6
references.pmid: 22090193
references.citation: Psychooncology. 2008 Jun;17(6):561-9
references.pmid: 17886262
references.citation: Soc Sci Med. 1996 Oct;43(8):1237-43
references.pmid: 8903128
references.citation: Int J Gynaecol Obstet. 2011 Aug;114(2):111-5
references.pmid: 21669428
references.citation: Vaccine. 2010 Nov 23;28(50):8026-32
references.pmid: 20887829
references.citation: Br J Cancer. 2012 Dec 4;107(12):1917-24
references.pmid: 23169286
references.citation: J Obstet Gynaecol. 2012 Jan;32(1):87-91
references.pmid: 22185546
references.citation: Cancer Detect Prev. 2002;26(2):139-45
references.pmid: 12102148
references.citation: Int J Circumpolar Health. 2012 Mar 19;71:17996
references.pmid: 22456050
references.citation: Health Educ Res. 2011 Apr;26(2):201-11
references.pmid: 21273186
references.citation: Health Care Women Int. 1997 May-Jun;18(3):251-62
references.pmid: 9256672
references.citation: BMC Med Educ. 2006 Mar 01;6:13
references.pmid: 16509979
references.citation: Int J Gynaecol Obstet. 2013 Aug;122(2):118-23
references.pmid: 23731506
references.citation: Epidemiol Rev. 2011;33:135-47
references.pmid: 21586673
references.citation: Eur J Cancer Care (Engl). 2011 Nov;20(6):720-7
references.pmid: 21521388
references.citation: J Womens Health Gend Based Med. 2002 Apr;11(3):265-75
references.pmid: 11988136
references.citation: CMAJ. 2007 Aug 28;177(5):480-3
references.pmid: 17724326
references.citation: Int J Gynecol Cancer. 2002 Sep-Oct;12(5):475-9
references.pmid: 12366665
references.citation: Int J Gynecol Cancer. 2002 Jul-Aug;12(4):376-82
references.pmid: 12144686
references.citation: Sex Transm Infect. 2012 Aug;88(5):357-62
references.pmid: 22332149
references.citation: Soc Sci Med. 1997 Jul;45(2):283-94
references.pmid: 9225415
references.citation: Int J Gynecol Cancer. 2005 Nov-Dec;15(6):1049-59
references.pmid: 16343181
references.citation: Am J Obstet Gynecol. 2014 Jan;210(1):81.e1-7
references.pmid: 23999419
references.citation: Br J Health Psychol. 2011 Sep;16(3):559-79
references.pmid: 21722276
references.citation: J Low Genit Tract Dis. 2008 Jul;12(3):232-41
references.pmid: 18596467
references.citation: Health Care Women Int. 2007 Nov-Dec;28(10):930-50
references.pmid: 17987461
references.citation: Bull World Health Organ. 2001;79(10):954-62
references.pmid: 11693978
references.citation: BMJ. 2000 Jan 8;320(7227):114-6
references.pmid: 10625273
references.citation: Br J Health Psychol. 2007 Sep;12(Pt 3):439-62
references.pmid: 17640455
references.citation: Soc Sci Med. 2012 May;74(10):1486-93
references.pmid: 22459188
references.citation: BMJ. 2000 Jan 1;320(7226):50-2
references.pmid: 10617534
references.citation: Best Pract Res Clin Obstet Gynaecol. 2006 Apr;20(2):207-25
references.pmid: 16359925
references.citation: Int J STD AIDS. 2010 Mar;21(3):187-90
references.pmid: 20215623
references.citation: Public Health. 2009 Oct;123(10):680-5
references.pmid: 19863980
references.citation: Reprod Health. 2007 Jun 26;4:4
references.pmid: 17594474
references.citation: Afr J Reprod Health. 2008 Dec;12(3):159-72
references.pmid: 19435020
references.citation: Afr J Reprod Health. 2006 Apr;10(1):91-103
references.pmid: 16999199