Gynaecological oncology services: A qualitative exploration of womens’ perspectives at a teaching hospital in North East India

ABSTRACT

Background:

Gynaecological malignancies pose a significant health concern in Northeastern region of India with poor survival rates often linked to limited awareness and/or delayed diagnosis. This study aimed to explore the perspectives of indigenous women in state of Assam regarding their gynecological cancer care seeking practices.

Methods:

This descriptive, qualitative study was conducted among 15 women attending the Obstetrics and Gynaecology Out Patient Department of a teaching hospital. Participants were purposively identified to ensure diverse perspectives. Semi-structured interviews highlighted their experiences with gynecological care. Interviews were continued until data saturation was achieved. These were transcribed verbatim, translated, coded, and analyzed thematically.

Results:

Study participants were aged between 25 and 60 years. Identified themes were the lack of awareness, family support and open communication with family and healthcare providers. Most were not aware of gynecological malignancies and available screening facilities. Lack of privacy and embarrassment of gynecological examination were perceived barriers to care seeking. Low prioritization of one’s health, lack of autonomy and financial dependence on the spouse were personal level barriers. Fear of being diagnosed with cancer compounded by lack of information from hard-pressed healthcare providers also hindered early help seeking. Participants also preferred a female gynecologist for management of gynaecological malignancies.

Conclusion:

Lack of awareness and perceived barriers to early care seeking for gynaecological malignancies should be addressed to prevent cancer, ensure early detection and prompt treatment among indigenous women. These findings could be applied to improve the patient-centeredness of care facilitating timely and high-quality treatment for these malignancies.

Introduction

Gynaecological malignancies or the female genital neoplasms are on a rise worldwide with over 3.6 million new diagnoses and 1.3 million deaths annually.[1] Low and middle income countries (LMICs) that are the developing ones are not far behind and as per Globocan 2020 data, India (as part of the LMIC spectrum) recorded 180,000 gynaecological cancer cases out of 678,383 new cases in women and the numbers are increasing.[2,3] In view of the enormity of the situation, the World Health Organization has put forward a strategy for elimination of cervical cancer[4] but data of service utilization speak elsewise.[5] Even though medical advancements have definitely improved treatment outcomes, the success of healthcare services is not solely defined by clinical outcomes. Understanding patient expectations and experiences is crucial for providing comprehensive and patient-centered care in the realm of gynaecological oncology, where the nature of treatments and the sensitive nature of the conditions often necessitate a comprehensive approach.[6,7,8,9] Till date, gynaecological oncology services remain largely unutilized in India till date.[10] This gap often originates at the community and primary care level, where missed opportunities for education, screening, and timely referral can lead to delayed diagnoses and poor outcomes.[11]

Optimal care for patients with these malignancies requires insight into the preferences of women, especially in relation to the healthcare services at community level. There is paucity of comprehensive qualitative studies focusing exclusively on these aspects.

The geographically remote states in Northeast India primarily inhabited by indigenous and tribal communities have a high cancer burden due to inherent risk factors and lack of healthcare facilities.[12,13] Hence this study was conducted in a teaching hospital in Assam in Northeast India, to primarily explore women’s healthcare service preferences for gynecological cancers in this region. Secondarily, it aimed to identify facilitators and barriers affecting women’s healthcare choices in relation to such malignancies.

Methodology

This descriptive, qualitative study was conducted among women attending the Obstetrics and Gynaecology Outpatient Department of a teaching hospital in the North Eastern State of Assam, India which caters to different ethnic and socioeconomic strata of society. Participant selection was done purposively amongst women attending the Obstetrics and Gynaecology OPD for gynaecological complaints. Participants not willing to give consent and those aged less than 18 years were excluded from the study.

The semi-structured interview guide prepared for the study was tested for feasibility by the authors, who are trained in qualitative research techniques. To reduce interviewer and participant bias, a simple and openended questionnaire was designed, with questions progressing from general (opening questions) to more specific topics, followed by exit questions and debriefing.

After developing a cordial relationship with the women, during the initial interactions and explanation of the purpose of the study, consenting women were enrolled by the study team. Women were also introduced to the primary author, while discussing information about the study. Face-to-face interviews were conducted by the same, a female gynecologic oncologist in the presence of a female nurse, for observing the interviews and taking notes. To maintaining confidentiality, participants were designated a particular number according to the order of their interviews (1 to 15). Interviews were conducted in a separate room in the OPD, to ensure privacy. They were audio-recorded and conducted in the local language (Assamese) and Hindi, as per the participant’s language preference. Each interview lasted for 40–45 min. The interviews included topics such as participants’ awareness about gynaecological malignancies and various aspects of gynaecological oncology services. Interviews were conducted until data saturation was achieved and stopped at 15 participants after discussion among the authors. Field notes were also recorded. Rigor was maintained through ongoing discussions, theme refinement, and close adherence to research questions. Due to the hospital-based setting, feedback was not taken from the participants neither were transcripts returned to them for comments.

Interviews were transcribed verbatim and translated. The manual, inductive thematic analysis was initially done in Microsoft Excel worksheet. Preliminary coding, categorization, identification of themes and sub-themes was done by the first author, reviewed by the second author, and finalized after consensus. Atlas Ti software was also used in analysis. Study was reported as per Consolidated criteria for Reporting Qualitative research (COREQ) checklist.[14]

The study was approved by the Institutional Ethics Committee (IEC number M2/F18/2023) and was conducted as per the Declaration of Helsinki ethical guidelines. Patients or the public were not involved in the design, or conduct, or reporting, or dissemination plans of our research.

Results

The median age of the subjects was 46 (Range 25–60 years) years. Most of the participants belonged to rural Muslim ethnicity. The commonest complaint was that of abnormal uterine bleeding in 8 (50%) of the patients. The demographic profile of the patients is presented in Table 1.

Table 1.

Demographic profile of patients

Variables	n (%)
Marital status
Married	13 (90%)
Widowed	1 (5%)
Unmarried	1 (5%)
Domicile
Rural	12 (80%)
Urban	3 (20%)
Kuppuswamy socioeconomic category
Class III	2 (10%)
Class IV	9 (60%)
Class V	4 (30%)
Religion
Muslim	9 (60%)
Hindu	6 (40%)
Educational status
Secondary	9 (60%)
High School	4 (30%
Graduate	2 (10%)
Occupation
Homemaker	12 (80%)
Daily wage Earner	3 (20%)

The following themes emerged out of the interview.

Theme 1: Lack of awareness

The interviews revealed that almost all the participants did not know about gynaecological cancers. Only two of them had heard about these cancers once at an awareness camp. Responses ranged from “what are these cancers” to even “is cervix in breast?” Participants disclosed that they had never heard about these cancers from anyone including their primary healthcare providers and community health care workers. Breast cancer was the most common cancer known to the participants (source of information being online portals like You Tube) though some had also heard about “mouth” (oral) cancers and “chest” (lung) cancers.

I have never heard of these cancers. Where do they happen? What is cervix? (Participant 1).

I have heard about breast cancer. They talked about these in our college. I have never heard about these gynaecological cancers. (Participant 4).

I have no idea about these cancers. Nobody has talked to me about them. Even our Anganwadi baidews have not mentioned about them ever. (Participant 5).

I have heard about these cancers once. They had come for some awareness camp in our sub centre. That was the first time I had heard about them. (Participant 6).

Theme 2: Shame and embarrassment

Another theme that came up was that of shame and embarrassment. Most of the participants were unwilling to come to the hospital for a checkup dreading a pelvic exam. They felt awkward discussing their problems specially with complaints like discharge per vaginum or vaginal/vulval itching. Most of the participants said that they waited till the last minute when their symptoms were severe. For some, even the thought of someone putting their hands in vagina was embarrassing enough. Few worried about the gender of the treating doctor and expressed preference for female gynecologists.

I am afraid to go to hospital as I heard you must remove your underwear and show to doctors who see lady patients. I don’t want to go, I feel ashamed. (Participant 4).

I do not want to go to the hospital to show to a doctor as they put hands down there. They did that during my delivery and I don’t feel good. (Participant 1).

I do not want to come to a gynecologist until it is very much needed. They ask us to remove our panties and it feels very uncomfortable. I think it’s probably necessary. Can they treat us without that? (Participant 3).

I am a bit scared to come to the hospital as I know they look at our private parts. I know they will do that as my problem is related to that but I cannot help that possibly. I want to be seen by a lady doctor. (Participant 11).

Theme 3: Open communication

Open communication in general or rather the lack of it was another dominant theme. According to participants, discussions about health almost never happened at home until someone was sick. Reportedly, even the community health workers or the first-contact physicians neither initiated discussions nor informed about these malignancies or any other ailments except for the one they were suffering from. For most of them, visits to hospital were a “quick in and out” affair with very little time for asking anything else. Few of them also pointed out that conversations were difficult to follow if it was not in their native language.

We do not have any talk at home regarding our health. Only when someone in the family falls sick do we talk about hospital and all. (Participant 8)

My husband is back from factory late in the evening. It is already time for dinner when he comes. Even if we talk, it is about other important things. (Participant 13).

The doctors at PHCs or our Anganwadi sisters have not talked about these things to us. If they had mentioned them maybe we would have thought about getting ourselves tested. (Participant 6)

I want to be told about these cancers in my mother language. I can understand better then. These tests which you have mentioned are very complex.” (Participant 10)

Theme 4: Busy healthcare providers and an even busier health care facility

Participants’ common perception was that of a perennially busy gynecologist. Some were afraid to talk to them anticipating rude behavior. Few confided that they consider skipping consultations as they feared the busy doctors. Participants seemed receptive enough to information if it was provided in a congenial manner but majority found it lacking. Surprisingly for some of the participants being busy meant that a doctor was rather skilled. Few even cited that the hospital was “too far” from their homes and it required a full day’s planning to go there.

I have heard doctors are busy and don’t have time to talk to patients. I am anyway scared to talk to them. Will they talk to us if we want to ask them about this screening that you are talking about? (Participant 4)

I am scared of the doctors in the hospital. During my delivery they scolded me so badly. I sometimes don’t want to go to the hospital due to this reason. I don’t want to be scolded again. (Participant 5)

The test that you are talking about I want to ask the doctors more about. Is it possible that they can possibly explain it to me patiently. There are so many patients in the OPD. Do you think they have time to talk about this in the busy OPD? (Participant 7)

The doctors are so busy everywhere. Plus this hospital has too much line. If I come, one day of my daily wages is gone. I can only delay coming here till the time my symptoms are worse. (Participant 14)

Theme 5: Lack of financial autonomy

Most of our study participants did not have any financial freedom that according to them, made their choices restricted. Spouses were the sole earners of the family except for a few. There were responses about most of the family income being channeled into daily expenses leaving little for health care. Spending money on health care was not a priority for them. Few participants had asked whether the screening tests were free. Some expressed willingness to undergo tests if they were subsidized.

“At home my husband is the sole bread earner. It is difficult for us to give us extra money for all these tests which you are talking about. I have no money of my own” (Participant 2).

My husband used to work in a factory before Covid. After the pandemic, it shut down and he lost his job. Now he is a daily wage earner. We do not have enough money sometimes to buy good food. I do not think my husband can give extra money to have tests in the hospital. (Participant 8)

I’m the bread earner of the family as my husband expired two years back. Ï work as a helping hand in others’ houses. The money I make barely gets me through the month. I have two children to take care of. My husband’s family does not take care of us at all. I cannot spend my money just like that. (Participant 12)

My father is the head of the family and I am still in college. If I want to have any tests or anything done, I would have to talk to him. He would probably agree but will have to tell him why this is needed. Are these tests free? (Participant 4)

Discussion

Summary

Help-seeking for gynaecological malignancies is intricate and encompasses different dimensions such as communication, emotional support, cultural sensitivity, and holistic care.[6] Through this qualitative study, we have attempted to highlight a few practical elements that contribute to shaping help-seeking behavior in these group of women. Open communication with supportive and approachable health care providers appeared to be facilitators to seeking care. On the contrary, low prioritization of one’s health coupled with embarrassment of a gynaecological examination seemed to be barriers in coming forward for receiving treatment. Lack of autonomy and financial dependence on the spouse also appeared to be impediments for the same. This research emphasized some of the specific challenges women in a resource poor setting face in seeking help for such gynaecological cancers.

Strengths and limitations

The qualitative design addressed the gaps which exist in between health care services and the targeted population. The outcomes were self-reported by the participants which added to its authenticity. Patients emphasized the importance of healthcare professionals understanding their cultural beliefs and practices. Various techniques were employed to ensure the study’s robustness, including the dual coding of transcripts by two individuals, regular discussions on emerging themes, repetitively refining the coding framework etc. This study aimed to include participants from diverse sociodemographic backgrounds. However, the participants were mostly from the rural background and it was limited to native language speakers. This was both a strength and limitation for this study. Another limitation was that this was a single institutional study and included only those who had come to the outpatient department for check-ups. Though the findings cannot be fully generalized, the outcomes of our study might extend to other populations as the obstacles highlighted by participants could have relevance for women of all strata of the society. Qualitative research has been an integral part of the research conducted in the field of gynecologic oncology and has been used to have a better idea of the patients’ perspectives.[7,8,15]

Comparison with existing literature

As in previous reports, lack of awareness about gynae malignancies among the participants was one of the primary reasons to not come forward for care seeking.[16,17,18] This was more pertinent in population who belong to indigenous communities or are in hard-to-reach areas as in ours.[19] Though not specific, the unique sociocultural fabric of this region should be considered carefully while formulating healthcare policies. As they had no knowledge about these cancers, it is probably too much to expect that they would have any idea about their screening or other preventive measures. Another reason for not coming forward could be the ignorance of the seriousness of the symptoms as in literature.[7,19] Embarrassment of a gynaecological examination as well as the prolonged waiting times in the hospitals were also contributory as reported in our study.[7,20,21,22] There is a wide gap between the available resources and their utilization.[7] As it is difficult to provide services when women and their families do not have a clue about the problem,[10] more awareness sessions need to be conducted at the grassroot level to increase knowledgeability which may translate to increased participation at care seeking. Social media and support groups could be helpful in this aspect.[22,23]

Our participants emphasized the need for empathetic communication and clear information from their health care providers as in prior studies.[20] As observed, efficient communication not only nurtures a feeling of empowerment but also helps overcome anxiety, playing a pivotal role in enhancing overall patient satisfaction[24] Active listening as well as the capacity of the healthcare professionals to engage in open dialogue with patients emerged as crucial elements in meeting patient expectations as already stated.[25] Often, primary care physicians as the initial contact within the healthcare system, have an important role in early detection, education, and ongoing support for women’s health issues including gynecological malignancies.[26] This group of health care providers could help in improving interpersonal communication with patients.

Geographical factors (distance of the health care facility from their homes) also mattered and greater distance translated to lesser visits at the doctor’s.[27,28] There have been reports of patients preferring the telemedicine facilities to avail gynecologic oncologic services as it did away with the inconveniences of travelling.[29] Waiting time for consultation was found to be another deterrent as in literature.[30] Research has shown that improving the time of interaction between the women and their health care providers could influence their decision making in regard to help seeking[7] and same was documented in our study. Studies have found disparities in cervical cancer awareness as well as screening uptake in regions where Muslim women were in majority. Considering that most of our participants were Muslim females of rural ethnicity, this revelation was worth pondering over.[31]

Out of various influencing factors, socioeconomic disparities were found to be an important cause of cancer related morbidity and mortality in women.[12,13] Poor uptake of screening for gynaecological malignancies can also be considered an outcome.[7,32] This is in accordance with our findings where most of the participants lacked financial autonomy. This was one of the primary reasons for their poor turnout at the health care providers’. Health care decisions were mostly at the behest of the main earning member of the family, in this case spouses as is already documented.[33] Literature suggests economical factor to play a major role in influencing help seeking propensities[34,35] and this is also precisely what we found in our study. Though various schemes like CDC by the Government of India is in place to encourage screening for these malignancies,[36] the gap between the resources and their utilization by the people needs to be addressed.

Future implications and research

The findings underscore the imperative for healthcare providers specially in primary care settings to adopt a patient-centered approach. Adapting care to incorporate cultural nuances can also be considered as a crucial aspect of meeting patient expectations in the context of help seeking. Implementing training programs that enhance communication skills, emotional support, and cultural competence among healthcare professionals is essential. Future research should focus on larger and more diverse samples including longitudinal assessments to confirm and expand upon these qualitative findings and potentially develop interventions catering to patient expectations.

Conclusion

Help seeking in gynaecological malignancies is influenced by a multitude of factors. Lack of awareness about these malignancies as well as socioeconomic disparities are barriers to help seeking. Refining communication with health care providers and encouraging community involvement are essential measures for maximizing the utilization of gynecological oncology services in Northeast India.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.