A Counseling Mobile App to Reduce the Psychosocial Impact of Human Papillomavirus Testing: Formative Research Using a User-Centered Design Approach in a Low-Middle-Income Setting in Argentina.

BACKGROUND: Human papillomavirus (HPV) testing detects sexually transmitted infections with oncogenic types of HPV. For many HPV-positive women, this result has negative connotations. It produces anxiety, fear of cancer or death, and disease denial. Face-to-face counseling could present many difficulties in its implementation, but a counseling mobile app could be practical and may help HPV-positive women reduce the psychosocial impact of the result, improve their knowledge of HPV and cervical cancer, and increase adherence to follow-up. OBJECTIVE: This study aims to understand HPV-tested women's perceptions about an app as a tool to receive information and support to reduce the emotional impact of HPV-positive results. We investigated their preferences regarding app design, content, and framing. METHODS: We conducted formative research based on a user-centered design approach. We carried out 29 individual online interviews with HPV-positive women aged 30 years and over and 4 focus groups (FGs) with women through a virtual platform (n=19). We shared a draft of the app's potential screens with a provisional label of the possible content, options menus, draft illustrations, and wording. This allowed us to give women understandable triggers to debate the concepts involved on each screen. The draft content and labels were developed drawing from the health belief model (HBM) and integrative behavioral model (IBM) variables and findings of mobile health literature. We used an FG guide to generate data for the information architecture (ie, how to organize contents into features). We carried out thematic analysis using constructs from the HBM and IBM to identify content preferences and turn them into app features. We used the RQDA package of R software for data processing. RESULTS: We found that participants required more information regarding the procedures they had received, what HPV-positive means, what the causes of HPV are, and its consequences on their sexuality. The women mentioned fear of the disease and stated they had concerns and misconceptions, such as believing that an HPV-positive result is a synonym for cancer. They accepted the app as a tool to obtain information and to reduce fears related to HPV-positive results. They would use a mobile app under doctor or health authority recommendation. The women did not agree with the draft organization of screens and contents. They believed the app should first offer information about HPV and then provide customized content according to the users' needs. The app should provide information via videos with experts and testimonies of other HPV-positive women, and they suggested a medical appointment reminder feature. The app should also offer information through illustrations, or infographics, but not pictures or solely text. CONCLUSIONS: Providing information that meets women's needs and counseling could be a method to reduce fears. A mobile app seems to be an acceptable and suitable tool to help HPV-positive women.

Ten Steps to Design a Counseling App to Reduce the Psychosocial Impact of Human Papillomavirus Testing on the Basis of a User-Centered Design Approach in a Low- and Middle-Income Setting.

PURPOSE: This study describes the 10 steps followed to produce the information architecture of a user-centered design (UCD) counseling mobile application, the first phase to develop an app. The app aims to reduce the psychosocial impact of the human papillomavirus test result and improve women's knowledge of human papilloma virus and cervical cancer. METHODS: We used a UCD approach to produce the information architecture of the app (ie, how to organize contents into features). We analyzed field notes, meeting agendas, and documentation produced during each stage of the design process. We described the goals, methods, and outcomes of each step. We also discussed the critical challenges and the strategies to address them. RESULTS: The steps are (1) knowledge, attitudes, and beliefs mapping: reanalysis of team's research findings from prior studies; (2) environmental scanning of apps available on the market; (3) stakeholders' point of view: The International Advisory Committee; (4) potential user's profile: building archetypes through the Persona method; (5) women's interviews: user's preferences and experiences; (6) effective features: scoping review to select app's features that address psychosocial impact; (7) the user journey: ideal interaction with the gynecological service and the counseling app; (8) women's focus groups: using Personas and Scenarios to discuss app's mock-up; (9) women's design sessions: prototype test and card-sorting techniques; and (10) team's design session: translating results into visual objects and features. CONCLUSION: We provide here detailed descriptions of the UCD process of an app for human papillomavirus-tested women for those venturing into the area of mHealth strategies work. Our experience can be used as a guide for future mHealth app development for a low- and middle-income setting.

["I felt myself getting sick:" women's perceptions and understandings of a positive human papillomavirus test in Jujuy, Argentina]. / "Me sentí enfermar": percepciones y comprensión de las mujeres del resultado positivo de un test de virus del papiloma humano en Jujuy, Argentina.

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.

Con el objetivo de analizar las percepciones y clasificar las modalidades de comprensión sobre un resultado positivo del test de virus del papiloma humano (VPH+), en 2016 realizamos 38 entrevistas en profundidad a mujeres con diagnóstico de VPH+ (prueba de Papanicolaou normal y anormal), realizado en el sistema público de salud de Jujuy. Se elaboró una tipología que delimita perfiles de mujeres en función del tipo de comprensión del resultado: 1) comprensión; 2) no-comprensión, a) subestimación, b) sobreestimación, y c) confusión. Entre aquellas que no comprendían, las entrevistadas que confundían el resultado relataron percepciones contradictorias con relación al VPH y su gravedad; quienes lo subestimaban tendían a mencionar ausencia de síntomas y a expresar escasa preocupación; mientras que aquellas que lo sobreestimaban se consideraban enfermas y expresaban preocupación, relato de una ruptura biográfica y dolores físicos. Los hallazgos confirman la necesidad de mejorar los mecanismos de entrega e información sobre los resultados para disminuir el impacto psicosocial en las mujeres y aumentar la adherencia al seguimiento sugerido.

"I'm neither here, which would be bad, nor there, which would be good": the information needs of HPV+ women. A qualitative study based on in-depth interviews and counselling sessions in Jujuy, Argentina.

The objective of this qualitative study was to explore the information needs of HPV+ women. We conducted 38 in-depth interviews with HPV+ women in the province of Jujuy, Argentina. The interviews included a counselling session to respond to women's concerns and questions. Women perceived the information provided as good, despite having several doubts and misconceptions after receiving results of an HPV+ test. They expressed difficulties in formulating questions during the consultation due to shame, excess of information provided or lack of familiarity with technical language. They valued emotional support and being treated kindly by professionals. The perceived information needs that emerged as most important were: (1) the meaning of an HPV+ result and its relationship with cervical cancer evolution and severity; (2) continuity and timing of the care process; (3) information on the sexual transmission of the virus; (4) explanation of the presence or absence of symptoms. Women's primary unperceived information needs were: (1) detailed information about colposcopy, biopsy and treatments and their effects (including fertility consequences); and (2) deconstructing the association of sexual transmission with infidelity. Sources of information included: (1) the health care system; (2) the internet; and (3) social encounters (close friends and relatives). It is crucial to strengthen the processes for delivering results, with more thorough information, improved emotional support and active listening focused on the patient, as well as to conceive new formats to provide information in stages and/or gradually, in order to facilitate women's access to the health care system and the information they need.

Psycho-social impact of positive human papillomavirus testing in Jujuy, Argentina results from the Psycho-Estampa study.

Human papillomavirus (HPV) testing can have a negative impact on women's lives which might also result in abandoning the follow-up and treatment process. This study measured the psycho-social impact of HPV-positivity among HPV-tested women from Jujuy, Argentina, a middle-low income setting. In this cross-sectional study (2015-2016), the psycho-social impact of HPV-positivity was measured using the Psycho-Estampa Scale, specifically designed and validated to be used in screening contexts. We measured mean scores for each of the five scale domains, and the Overall Impact score (Values from 1: No impact to 4: Heavy impact). We compared scores according to cytology triage diagnosis using ordinal logistic regression. A total of 163 HPV-positive women were recruited at the Centro Carlos Alvarado hospital and included in the study sample; of these, 124 (76.1%) had normal triage cytologies. The overall Impact score was between low and moderate (mean:2.56, SD:0.65). The highest psycho-social impact was measured in the Worries about cancer and treatment domain (mean score:3.60, SD:0.60), followed by Sexuality domain (mean:2.50; SD:1.00). The Uncertainty about information provided by health providers domain had the lowest mean score (mean:2.14, SD:0.73). Compared to women with normal cytologies (n = 124), women with abnormal cytologies (n = 39) had a higher likelihood of greater overall Psycho-social Impact (OR: 2.91; p = 0.0036). No statistically significant differences were found in scores of specific domains according to cytology results. It is important to devise specific counseling interventions to reduce the psycho-social impact of HPV-Testing as primary screening and its potential effect on completion of the diagnosis/ treatment process.

"Me sentí enfermar": percepciones y comprensión de las mujeres del resultado positivo de un test de virus del papiloma humano en Jujuy, Argentina / "I felt myself getting sick:" women's perceptions and understandings of a positive human papillomavirus test in Jujuy, Argentina

RESUMEN Con el objetivo de analizar las percepciones y clasificar las modalidades de comprensión sobre un resultado positivo del test de virus del papiloma humano (VPH+), en 2016 realizamos 38 entrevistas en profundidad a mujeres con diagnóstico de VPH+ (prueba de Papanicolaou normal y anormal), realizado en el sistema público de salud de Jujuy. Se elaboró una tipología que delimita perfiles de mujeres en función del tipo de comprensión del resultado: 1) comprensión; 2) no-comprensión, a) subestimación, b) sobreestimación, y c) confusión. Entre aquellas que no comprendían, las entrevistadas que confundían el resultado relataron percepciones contradictorias con relación al VPH y su gravedad; quienes lo subestimaban tendían a mencionar ausencia de síntomas y a expresar escasa preocupación; mientras que aquellas que lo sobreestimaban se consideraban enfermas y expresaban preocupación, relato de una ruptura biográfica y dolores físicos. Los hallazgos confirman la necesidad de mejorar los mecanismos de entrega e información sobre los resultados para disminuir el impacto psicosocial en las mujeres y aumentar la adherencia al seguimiento sugerido.

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.

["I was like a ticking bomb": Experiences of severe maternal morbidity in the Metropolitan Area of Buenos Aires]. / "Era una bomba de tiempo": el derrotero de la morbilidad materna severa en el Área Metropolitana de Buenos Aires.

With the objective of recording and analyzing women's experiences with severe maternal morbidity from their perspective, between February and May 2011, 16 semi-structured interviews with women treated in the public hospitals of the Buenos Aires Metropolitan Area who suffered from severe maternal morbidity were carried out. In their testimonies, women report a number of delays in care, such as difficulties in identifying the problem on time, obstacles in accessing health centers and important faults in the management of obstetric emergencies. They describe the event as surprising, distressing and painful, a perception reinforced by the violation of their rights and significant communication problems. These findings are meant as a step towards the holistic and comprehensive study of severe maternal morbidity, as well as to confirm the urgent need for further research from a gender and humans rights perspective.

"Lo quería hacer rápido, lo quería hacer ya": tiempos e intervalos durante el proceso de aborto / "Queria fazer logo, queria fazer já": tempos e intervalos durante o processo de aborto / "I wanted to do it quickly, I want to do it now": times and intervals during the process of abortion

Resumen Este artículo se propone, desde una perspectiva cualitativa, describir y analizar los tiempos durante el proceso de aborto en mujeres residentes en el Área Metropolitana de Buenos Aires, en base a cinco entrevistas en profundidad. Encontramos, en primer lugar, que el tiempo de gestación funciona como un cronómetro, que avanza de modo tan apremiante como la voluntad de interrumpirlo. En segundo lugar, identificamos el aborto como un proceso atravesado por los siguientes intervalos: 1) noticia del embarazo; 2) toma de la decisión de abortar; 3) búsqueda de información y establecimiento de vínculos; 4) obtención de la medicación; 5) toma de la medicación; y 6) expulsión y verificación del aborto. Las entrevistas dan cuenta de un escenario contradictorio, en el que la clandestinidad y la imposibilidad de nombrar el aborto en el entorno social se superponen con estrategias de resolución, individuales y colectivas.

Resumo A partir de uma perspectiva qualitativa, propomos descrever e analisar os tempos durante o processo de aborto entre mulheres residentes na Área Metropolitana de Buenos Aires, com base em cinco entrevistas em profundidade. Encontramos, em primeiro lugar, que o tempo de gestação funciona como um cronômetro que avança de modo tão coercivo como a vontade de interrompê-la. Em segundo lugar, identificamos o aborto como um processo atravessado pelos seguintes intervalos: 1) notícia da gravidez; 2) tomada da decisão de abortar; 3) busca de informação e estabelecimento de vínculos; 4) obtenção da medicação; 5) ingestão da medicação; 6) expulsão do feto e verificação do aborto. As entrevistas dão conta de um cenário contraditório em que a clandestinidade e a impossibilidade de nomear o aborto no entorno social se sobrepõem a estratégias de resolução, individuais e coletivas.

Abstract Adopting a qualitative perspective, five abortion experiences of women living in the Metropolitan Area of Buenos Aires are described and analysed through in-depth interviews. We found that the time of gestation is like a chronometer progressing as urgently as the willingness to interrupt the pregnancy. We also identified abortion as a process punctuated by the following intervals: 1) knowing about the pregnancy; 2) deciding to have the abortion; 3) searching for information and the establishment of networks; 4) obtaining the medication; 5) taking the medication; and 6) the expulsion of the fetus and the verification of the abortion. Interviews showed a contradictory scenario in which secrecy and the impossibility to name abortion in the social environment overlap with strategies both individual and collective to solve the issue.

Perspectiva de profesionales de la salud sobre el diagnóstico y tratamiento en un programa de tamizaje con test de VPH / Health providers perspectives on diagnosis and treatment in a HPV-test based screening program

INTRODUCCIÓN: el cáncer de cuello uterino (CCU) persiste como un importante problema de salud pública en Argentina y en otros países. OBJETIVOS: Conocer, desde la perspectiva de los profesionales, las barreras y facilitadores del proceso de diagnóstico y tratamiento de las mujeres con lesiones precancerosas en el contexto de utilización del test de virus del papiloma humano como tamizaje en la provincia de Jujuy. MÉTODOS: Desde un abordaje cualitativo, se realizaron 26 entrevistas en profundidad a profesionales del sistema público de salud de Jujuy involucrados en actividades de prevención del CCU. RESULTADOS: Obstáculos: 1) factores relativos a las mujeres (temor, desconocimiento, factores culturales, ámbitos de residencia, condiciones de vida y condicionantes de género); 2) factores relativos a los servicios de salud (paros y cortes de ruta, falta de recursoshumanos y sobrecarga de tareas, resistencias de profesionales, faltade insumos y fallas en los sistemas de referencia y contrarreferencia);3) dificultades en la relación y comunicación médico-paciente.Facilitadores: 1) búsqueda activa; 2) descentralización de la atención; 3)horarios extendidos y atención a demanda; 4) buen diálogo y calidadde los mensajes transmitidos. CONCLUSIONES: Los profesionalesidentifican obstáculos y facilitadores de distinto orden. Pese a que reconocen la incidencia de factores culturales y de comunicación, los consideran menos a la hora de implementar acciones preventivas.

INTRODUCTION: cervical cancer (CC) remains a major public health problem in Argentina and in other countries.OBJECTIVES: From the health professional perspective, to identifybarriers and facilitators to the diagnosis and treatment processfor women with precancerous lesions within the context of humanpapillomavirus test implementation in the province of Jujuy. METHODS: From a qualitative approach, 26 in-depth interviews were carried out to public healthcare providers involved in CCprevention activities in Jujuy. RESULTS: Barriers: 1) women relatedfactors (fear, lack of knowledge, cultural factors, areas of residence, living conditions, gender factors); 2) health services related factors (strikes and road blocks, lack of human resources, excessive workload, healthcare professional resistance, lack of supplies, failures in referral and counter-referral systems); 3)difficulties in doctor-patient relationship and communication.Facilitators: 1) active search; 2) health care decentralization; 3) extended schedule and on-demand health service; 4) good doctor-patient communication. CONCLUSIONS: Providers identify barriers and facilitators of different relevance levels. Despite they recognize the impact of cultural factors and communication, these factors are less considered for the implementation ofpreventive actions.

"Era una bomba de tiempo": el derrotero de la morbilidad materna severa en el Área Metropolitana de Buenos Aires / "I was like a ticking bomb": Experiences of severe maternal morbidity in the Metropolitan Area of Buenos Aires

Con el propósito de conocer las vivencias de mujeres que atravesaron eventos de morbilidad materna severa, desde su propia perspectiva, entre febrero y mayo de 2011, se realizaron 16 entrevistas semiestructuradas a mujeres que padecieron morbilidad materna severa, atendidas en hospitales públicos del Área Metropolitana de Buenos Aires. Los testimonios dan cuenta de una serie de demoras, como la dificultad para identificar el problema a tiempo, los obstáculos en el acceso al sistema de salud, e importantes fallas en el manejo de la emergencia obstétrica. El evento es vivido como sorpresivo, angustiante y doloroso por las mujeres, lo cual se ve reforzado por una fuerte vulneración de sus derechos y por problemas significativos en la comunicación. Estos hallazgos constituyen un puntapié para avanzar en la comprensión integral y holística de la morbilidad materna severa, y confirman la necesidad de seguir investigando desde la perspectiva de género y de derechos.

With the objective of recording and analyzing women's experiences with severe maternal morbidity from their perspective, between February and May 2011, 16 semi-structured interviews with women treated in the public hospitals of the Buenos Aires Metropolitan Area who suffered from severe maternal morbidity were carried out. In their testimonies, women report a number of delays in care, such as difficulties in identifying the problem on time, obstacles in accessing health centers and important faults in the management of obstetric emergencies. They describe the event as surprising, distressing and painful, a perception reinforced by the violation of their rights and significant communication problems. These findings are meant as a step towards the holistic and comprehensive study of severe maternal morbidity, as well as to confirm the urgent need for further research from a gender and humans rights perspective.