The emotional experience of treatment for locally advanced cervical cancer: Qualitative research findings from Brazil, China, Germany and the US.
Authors: Szamreta Elizabeth A. , Mulvihill Emily , Bates Dawn , Aguinaga Katherine , Amos Kaitlan , Salani Ritu 
Published: June 2023

e24217

Background: Little has been reported on the emotional journey of women treated for locally advanced cervical cancer (LACC). This study aimed to understand the expectations and experience of these women. Methods: Semi-structured telephone interviews were conducted in 2022 among women diagnosed with LACC in the past 2 years in Brazil (BR), China (CH), Germany (DE) and the US. This research elicited voices representing diverse demographic & socioeconomic groups. Trained moderators asked questions about experience and emotions during the journey from diagnosis through treatment. Transcripts were coded using NVivo qualitative analysis software to identify key themes that emerged from the data. Results: Ninety-two women in the US (n = 26), BR (n = 25), CH (n = 25), and DE (n = 16) participated, with mean age ranging from 35.7 years in BR to 53.4 years in DE. At the time of treatment decision, women reported receiving information about what to expect during treatment, including information about short and long term side effects of treatment (US 13/21, BR 14/22, CH 6/21, DE 6/9). Several women reported their doctor raising the chance to be cured after surgery/treatment (US 3/21, BR 12/22, CH 3/21, DE 1/9) and many women asked about prognosis (US 1/5, BR 2/6, CH9/17, DE 2/6). While most women reported that their doctors answered their questions and came away with positive feelings, some came away with negative feelings, did not ask questions generally (10/54) about diagnosis (7/37) and/or treatment (5/18) and blamed themselves (US 1/1, BR 1/2, CH2/3, DE 1/4). “No, I didn’t [believe all my questions were answered], but I believed the problem was about myself. At that moment, I had no idea what questions I should ask my doctor.” CN06 “No. As I was alone, I was so scared that I did not ask much.” BR25 Women shared that positive parts of their cancer journey were (a) gratitude and personal growth, (b) receiving support or making connections, (c) appreciation for their HCPs. Women noted negative aspects including (a) dealing with cancer or side effects, (b) facing death, recurrence or knowing others who have died, (c) encountering negative or unsupportive reactions from others. At the time of interview, most women (n = 68/92) described their general health as good, even while some continued experiencing minor symptoms or treatment side effects. Negative impacts of LACC included feelings of denial, worry, depression, fear, and worsening health. Conclusions: Currently, women report both positive and negative aspects of their LACC treatment decision and cancer care journey. A better understanding of women’s feelings when deciding on treatment, including feelings about how information needs are addressed, can promote a more positive interaction with the healthcare system, satisfaction with LACC treatment, experience living with the impact of the treatment they chose, and outlook for the future.