“I felt myself getting sick:” women’s perceptions and understandings of a positive human papillomavirus test in Jujuy, Argentina

https://doi.org/10.18294/sc.2021.3572

Published 23 August 2021 Open Access


Lucila Szwarc Doctor in Social Sciences. Postdoctoral fellow, Centro de Estudios de Estado y Sociedad, Consejo Nacional de Investigaciones Científicas y Técnicas, Ciudad Autónoma de Buenos Aires, Argentina. image/svg+xml , Victoria Sánchez Antelo Doctor in Social Sciences. Adjunct researcher, Centro de Estudios de Estado y Sociedad, Ciudad Autónoma de Buenos Aires, Argentina. image/svg+xml , Melisa Paolino Doctor in Social Sciences. Assistant researcher, Centro de Estudios de Estado y Sociedad, Consejo Nacional de Investigaciones Científicas y Técnicas, Ciudad Autónoma de Buenos Aires, Argentina. image/svg+xml , Silvina Arrossi Doctor in Demography. Principal Investigator, Centro de Estudios de Estado y Sociedad, Consejo Nacional de Investigaciones Científicas y Técnicas, Ciudad Autónoma de Buenos Aires, Argentina. image/svg+xml



Abstract views
1198
Metrics Loading ...

Crossref
Scopus
Google Scholar
Europe PMC

Keywords:

Human Papillomavirus, Preventive Health Services, Communication Barriers, Diagnosis, Cervix Uteri, Argentina

Abstract


With the purpose of analyzing women’s perceptions and classifying their modes of understanding a positive human papillomavirus (HPV+) test, we conducted 38 in-depth interviews with women who had received an HPV diagnosis (normal and abnormal Pap smear), screened in Jujuy’s public health system in 2016. A typology based on women’s understandings of the result was developed: 1) understanding; 2) lack of understanding; a) underestimation; b) overestimation; c) confusion. The interviewees who experienced confusion over the results reported contradictory perceptions in relation to a positive HPV test and its severity; those who underestimated it tended to mention the absence of symptoms and expressed little concern over the result; while those who overestimated it considered themselves sick and described concern, narrating a biographical disruption and physical pain. These findings confirm the need to improve the delivery of results and the provision of information in order to decrease psychosocial impact and increase follow-up adherence in HPV-positive women.


References


1. Almonte M, Murillo R, Sánchez GI, Jerónimo J, Salmerón J, Ferreccio C, Lazcano-Ponce E, Herrero R. Nuevos paradigmas y desafíos en la prevención y control del cáncer de cuello uterino en América Latina. Salud Pública de México. 2010;52(6):544-559.

2. Arrossi S. Prevención del cáncer cervicouterino: recomendaciones para el tamizaje, seguimiento y tratamiento de mujeres en el marco de programas de tamizaje basados en el test de VPH: actualización 2015. Ciudad Autónoma de Buenos Aires: Instituto Nacional del Cáncer; 2015.

3. Karasz A, McKee MD, Roybal K. Women’s experiences of abnormal cervical cytology: Illness representations, care processes, and outcomes. Annals of Family Medicine. 2003;1(4):196-202.

4. Forss A, Tishelman C, Widmark C, Sachs L. Women’s experiences of cervical cellular changes: an unintentional transition from health to liminality? Sociology of Health & Illness. 2004;26(3):306-325.

5. Sánchez Antelo V, Kohler RE, Szwarc L, Paolino M, Kasisomayajula V, Arrossi S. Knowledge and perceptions regarding triage among human Papillomavirus–tested women: A qualitative study of perspectives of low-income women in Argentina. Women’s Health. 2020;16:174550652097601.

6. Rajaram SS, Hill J, Rave C, Crabtree BF. A biographical disruption: The case of an abnormal pap smear. Health Care for Women International. 1997;18(6):521-531.

7. Rask M, Swahnberg K, Lindell G, Oscarsson M. Women’s experiences of abnormal Pap smear results – A qualitative study. Sexual & Reproductive Healthcare. 2017;12:3-8.

8. Leite V, Santos BD, Pereira MG. Psychosocial impact of human papillomavirus on women’s sexual dissatisfaction and quality of life. Journal of Psychosomatic Obstetrics and Gynaecology. 2019;40(3):232-238.

9. Arrossi S, Almonte M, Herrero R, Gago J, Sánchez Antelo V, Szwarc L, Thouyarete L, Paolino M, Wiesnerf C. Psycho-social impact of positive human papillomavirus testing in Jujuy, Argentina results from the Psycho-Estampa study. Preventive Medicine Reports. 2020;18:101070.

10. Waller J, Marlow LAV, Wardle J. The association between knowledge of HPV and feelings of stigma, shame and anxiety. Sexually Transmitted Infections. 2007;83(2):155-159.

11. León-Maldonado L, Allen-Leigh B, Lazcano-Ponce E. Consejería en la detección de VPH como prueba de tamizaje de cáncer cervical: un estudio cualitativo sobre necesidades de mujeres de Michoacán, México. Salud Pública de México. 2014;56(5):519-527.

12. Verhoeven V, Baay MFD, Baay PE, Lardon F, Van Royen P, Vermorken JB. Everything you always wanted to know about HPV (but could not ask your doctor). Patient Education and Counseling. 2010;81(1):101-105.

13. Marván ML, Ehrenzweig Y, Catillo-López RL. Fatalistic beliefs and cervical cancer screening among Mexican women. Health Care for Women International. 2016;37(1):140-154.

14. Zamberlin N, Thouyaret L, Arrossi S. Lo que piensan las mujeres: conocimientos y percepciones sobre cáncer de cuello de útero y realización de PAP. Buenos Aires: Organización Panamericana de la Salud; 2011.

15. Horvath JDC, Kops NL, Caierão J, Bessel M, Hohenberger G, Wendland EM. Human papillomavirus knowledge, beliefs, and behaviors: A questionnaire adaptation. European Journal of Obstetrics & Gynecology and Reproductive Biology. 2018;230:103-108.

16. Hounsgaard L, Petersen LK, Pedersen BD. Facing possible illness detected through screening-experiences of healthy women with pathological cervical smears. European Journal of Oncology Nursing. 2007;11(5):417-423.

17. Castro Vásquez MC, Arellano Gálvez MC. Redes sociales de apoyo y género: vivencia de mujeres con VPH, displasias y cáncer cervicouterino. La Ventana: Revista de Estudios de Género. 2014;5(39):208-240.

18. Monsalve-Páez S, Valderrama-Vega D, Castillo-Zamora MF, Guzmán-Sabogal YR, Amaya-Guío J. Experiencia de las pacientes frente a citología cérvico-vaginal reportada como ASCUS o LEI de bajo grado en dos instituciones de Bogotá (Colombia), 2014. Revista Colombiana de Obstetricia y Ginecología. 2015;66(1):14-21.

19. Minayo MCS. El desafío del conocimiento: Investigación cualitativa en salud. Buenos Aires: Lugar Editorial; 2015.

20. Jones D, Manzelli H, Pecheny M. Grounded theory: Una aplicación de la teoría fundamentada a la salud. Cinta de Moebio. 2004;(19):38-54.

21. León-Maldonado L, Wentzell E, Brown B, Allen-Leigh B, Torres-Ibarra L, Salmerón J, et al. Perceptions and experiences of human papillomavirus (HPV) infection and testing among low-income Mexican women. PLOS ONE. 2016;11(5):e0153367.

22. Evangelista Rodrigues D, Alves Moreira KF, Souza de Oliveira T. Barriers to prevention of cervical cancer in the city of Porto Velho, Rondônia, Brazil. Investigación y Educación en Enfermería. 2016;34(1):59-67.

23. Yunus N, Mohamed Yusoff H, Draman N. Non-Adherence to recommended Pap smear screening guidelines and its associated factors among women attending health clinic in Malaysia. Malaysian Family Physician. 2018;13(1):10-17.

24. Carricaburu D, Pierret J. Vie quotidienne et recompositions identitaires autour de la séropositivité. Paris: CERMES-ANRS; 1992.

25. Bury M. Illness narratives: fact or fiction? Sociology of Health and Illness. 2001;23(3):263-285.

26. Varaldo CN. Convivendo com a hepatite C: Manual da convivência - Experiências e Informações de um portador do virus. Rio de Janeiro: Carlos Varaldo; 2003.

27. Kavanagh AM, Broom DH. Women’s understanding of abnormal cervical smear test results: a qualitative interview study. BMJ. 1997;314(7091):1388-1391.

28. Castro-Vásquez MC, Arellano-Gálvez MC. Acceso a la información de mujeres con VPH, displasia y cáncer cervical in situ. Salud Pública de México. 2010;52(3):207-212.

29. Vamos CA, Calvo AE, Daley EM, Giuliano AR, López Castillo H. Knowledge, behavioral, and sociocultural factors related to human papillomavirus infection and cervical cancer screening among inner-city women in Panama. Journal of Community Health. 2015;40(6):1047-1056.

30. Perrin KKM, Daley EM, Naoom SF, Packing-Ebuen JL, Rayko HL, McFarlane M, et al. Women’s reactions to HPV diagnosis: insights from in-depth interviews. Women Health. 2006;43(2):93-110.

31. Arellano Gálvez MC, Castro Vásquez MC. El estigma en mujeres diagnosticadas con VPH, displasia y cáncer cervicouterino en Hermosillo, Sonora. Estudios Sociales. 2013;21(42):259-278.

32. Bertram CC, Magnussen L. Informational needs and the experiences of women with abnormal Papanicolaou smears. Journal of the American Academy of Nurse Practitioners. 2008;20(9):455-462.

33. Jones D. Sexualidades adolescentes: amor, placer y control en la Argentina contemporánea. Buenos Aires: CICCUS, CLACSO; 2010.

34. Castro Vásquez MC. Habitus lingüístico y derecho a la información en el campo médico. Revista mexicana de sociología. 2011;73(2):231-259.

35. Cabré Pairet M, Ortiz Gómez T. Presentación. Asclepio. 2008;60(1):9-18.

36. Valls-Llobet C. La salud bio-psico-social re-generada. Quaderns de Psicologia. 2010;12(2):175-181.

37. Castro R. Génesis y práctica del habitus médico autoritario en México. Revista Mexicana de Sociología. 2014;76(2):167-197.

38. Bourdieu P. Raisons pratiques. Paris: Éditions Points; 1994.

39. Erviti J, Sosa IA, Castro R. Simposio X: Respeto a los derechos reproductivos en las políticas de salud reproductiva. Salud Pública de México. 2007;49(Esp. 1):161-165.

40. Blomberg K, Forss A, Ternestedt B-M, Tishelman C. From ‘silent’ to ‘heard’: Professional mediation, manipulation and women’s experiences of their body after an abnormal Pap smear. Social Science & Medicine. 2009;68(3):479-486.

41. Luna Blanco M, Sánchez Ramírez G. Los segmentos del cuerpo y sus padecimientos: un análisis preliminar de los procesos salud / enfermedad ligados al VPH y CaCu entre las parteras y promotores de salud de Chiapas. Cuicuilco. 2014;21(60):129-146.

42. Polman NJ, Veldhuijzen NJ, Heideman DAM, Snijders PJF, Meijer CJLM, Berkhof J. HPV-positive women with normal cytology remain at increased risk of CIN3 after a negative repeat HPV test. British Journal of Cancer. 2017;117(10):1557-1561.

43. Uijterwaal MH, Polman NJ, Witte BI, Kemenade FJ van, Rijkaart D, Berkhof J, et al. Triaging HPV-positive women with normal cytology by p16/Ki-67 dual-stained cytology testing: Baseline and longitudinal data. International Journal of Cancer. 2015;136(10):2361-2368.

44. Gago J, Paolino M, Arrossi S. Factors associated with low adherence to cervical cancer follow-up retest among HPV+/ cytology negative women: a study in programmatic context in a low-income population in Argentina. BMC Cancer. 2019;19(1):367.