Perceptions and treatment seeking for abnormal uterine bleeding among women of reproductive age group in rural North India: a qualitative study.

Four key domains of this study were perceptions about AUB, treatment seeking behaviour, perceived impact and barriers to seeking treatment (Table  1 ). Table 1 Identified key domains and themes S. no Domains Themes 1 Perceptions about AUB • About normal menses • About abnormal uterine bleeding • Causes of abnormal uterine bleeding • Complication of abnormal uterine bleeding • Risk groups 2 Treatment seeking behaviour • Decision to consult • Preferred place • Preferred doctor • Preferred treatment and acceptance 3 Perceived impact • Perceived impact 4 Barriers to seeking treatment • Gender of doctor • Unavailability of health care facilities • Poor family support • Poor financial status • Problems with government hospitals • Poor knowledge • Personal reasons Identified key domains and themes • About normal menses • About abnormal uterine bleeding • Causes of abnormal uterine bleeding • Complication of abnormal uterine bleeding • Risk groups • Decision to consult • Preferred place • Preferred doctor • Preferred treatment and acceptance • Gender of doctor • Unavailability of health care facilities • Poor family support • Poor financial status • Problems with government hospitals • Poor knowledge • Personal reasons WRA describe normal menses as which last for 3–5 days, occur every 27–30 days with variation of 1–2 days. They describe abnormal uterine bleeding as any change in the frequency, duration, amount and quality of normal menstrual bleeding. Majority of WRA believe usage of 3 pads or more a day is abnormal. Majority believe that cycles of more than 35 days or less than 10 days, or duration of more than 8–9 days is abnormal. According to MPW/ASHA, abnormal uterine bleeding referred to cycle length of 15–20 days, duration of more than 3–5 days and amount of more than 3 pads per day or a need to change pad every 2–3 h. IDI WRA—“If a lady says that she has to change pads 3 or more than 3 times in a day then it is abnormal.” IDI WRA—“If a lady says that she has to change pads 3 or more than 3 times in a day then it is abnormal.” IDI MPW- “It should last for 3–5 days, more than that is abnormal.” IDI MPW- “It should last for 3–5 days, more than that is abnormal.” WRA believe that AUB increases with age, intake of improper food and nutrition. MPW also believe that improper nutrition leads to abnormal uterine bleeding. The gynaecologist stated that consumption of junk food might lead to anovulatory cycles and PCOS which may subsequently lead to abnormal uterine bleeding, but not result in any structural causes of AUB. WRA- “Consumption of hot water, hot milk, tea, almonds, curd, buttermilk and cold food (like cold drink, ice-cream) also lead to abnormal uterine bleeding.” WRA- “Consumption of hot water, hot milk, tea, almonds, curd, buttermilk and cold food (like cold drink, ice-cream) also lead to abnormal uterine bleeding.” MPW- “There is a belief in the community that the causes of abnormal uterine bleeding include consumption of pickle, lemon, jaggery, papaya and hot food.” MPW- “There is a belief in the community that the causes of abnormal uterine bleeding include consumption of pickle, lemon, jaggery, papaya and hot food.” Gynaecologist- “It's a myth, actually food doesn't affect unless it’s an anovulatory cause like junk food leading to anovulatory cycles or PCOS, but structural causes are not mostly due to any food habits; they can eat whatever they want, but less oily food is obviously preferred.” Gynaecologist- “It's a myth, actually food doesn't affect unless it’s an anovulatory cause like junk food leading to anovulatory cycles or PCOS, but structural causes are not mostly due to any food habits; they can eat whatever they want, but less oily food is obviously preferred.” WRA and ASHA believe that common causes of AUB are anaemia and generalised weakness. Other causes include cancer, infection, high blood pressure (BP), white vaginal discharge, cardiac diseases, fibroids and consumption of medicines for cough, cold, GI infections and abortion. Gynaecologists reported that the common causes of AUB observed by them in their clinics were fibroids, adenomyosis, ovarian cyst, improper intake of contraceptive pills, consumption of medicines for abortion, hormonal disturbances (like hypothyroidism) and PCOS. WRA- “Women whose Hb equal to or more than 12 face the problem of AUB less frequently, whereas women whose Hb is less than 12 face this problem more frequently.” WRA- “Women whose Hb equal to or more than 12 face the problem of AUB less frequently, whereas women whose Hb is less than 12 face this problem more frequently.” According to WRA, common complications of AUB are infections, malaise, light headedness and vision problems. Other complications include low BP, anaemia, fibroids, headache, and problems while conceiving in future. According to MPW and ASHAs, the complications of AUB are weakness, headaches, severe anaemia, uterine infections, stroke and fainting. Gynaecologist stated that the most common sequelae of AUB is anaemia. MPW said- “Heavy bleeding, Fainting, Stroke and low BP can occur. Also, uterine infections can happen.” MPW said- “Heavy bleeding, Fainting, Stroke and low BP can occur. Also, uterine infections can happen.” Fig. 1 Treatment-seeking pathway for abnormal uterine bleeding among women of reproductive age in rural India Treatment-seeking pathway for abnormal uterine bleeding among women of reproductive age in rural India Most of the WRA sought medical care only when the problem of AUB did not resolve on its own, while some sought immediate consultation for any abnormality in menses. Gynaecologist stated that most of the women sought medical care after a few abnormal menstrual cycles, and many seek care only after marriage even if symptoms presented before. WRA- “I think about it only when the problem seems to be getting out of hand.” WRA- “I think about it only when the problem seems to be getting out of hand.” Gynaecologist- “Sometimes, some complaints like discharge PV, they must be having before marriage also, but they are able to show up only after marriage.” Gynaecologist- “Sometimes, some complaints like discharge PV, they must be having before marriage also, but they are able to show up only after marriage.” Most of the WRA said that they preferred to visit government hospitals as they got better relief there, but due to excessive patient load, long queues and waiting time, they had to go to private clinics. According to the gynaecologist, a lot of women seek help from the nearest provider, irrespective of whether they are certified or not. WRA- “The doctors at government hospitals are much better, but because of the huge number of patients, it takes a lot of time to get my turn.” WRA- “The doctors at government hospitals are much better, but because of the huge number of patients, it takes a lot of time to get my turn.” Gynaecologist- “Normally they go to the nearest doctor, whoever is available, whether the person is MBBS or not, whether that person is an RMP or anyone. Normally they go to those persons.” Gynaecologist- “Normally they go to the nearest doctor, whoever is available, whether the person is MBBS or not, whether that person is an RMP or anyone. Normally they go to those persons.” Most of WRA preferred to visit female doctors compared to male doctors. Gynaecologist also believed the same. WRA- “No one wants to talk to a male doctor; they feel that they can discuss their problems more openly with female doctors.” WRA- “No one wants to talk to a male doctor; they feel that they can discuss their problems more openly with female doctors.” Majority of WRA were using home remedies to treat AUB. Some of WRAs were following doctor’s advice. The gynaecologist said that the treatment options and preferences varied with the age group of the woman and whether or not she wanted to have children in the future. WRA- “These days the desi medicines are in prevalence, which provide a lot of relief.” WRA- “These days the desi medicines are in prevalence, which provide a lot of relief.” WRA- “If the period is too long, I usually eat something cold. That usually solves the problem.” WRA- “If the period is too long, I usually eat something cold. That usually solves the problem.” WRA told that AUB impacts on physical health and also affects school/college going girls as they have to take leave from school/college. MPW and ASHA stated that AUB had an impact on mental, social, physical health of the patient. Gynaecologist said that AUB leads to weakness and malaise that affects the ability to do daily routine work. As it has stigma attached to it, it affects mental as well as sexual health. Also, there is lack of support from the elderly people of the family as they fail to understand her condition. WRA- “She is not able to handle her chores well and maintain a healthy relation with her kids due to the heavy bleeding, her mind gets disturbed, and she stays tensed.” WRA- “She is not able to handle her chores well and maintain a healthy relation with her kids due to the heavy bleeding, her mind gets disturbed, and she stays tensed.” WRA faced different barriers in seeking care due to the lack of knowledge about AUB being a significant problem, being busy in household chores, lack of support from family, hesitance to share concerns regarding the problem, unavailability of female doctors, lack of nearby health care facilities, high costs of travel and treatment, long queues and waiting times at the hospitals and worrying about side-effects from medications. WRA- “I worry that it will cost a lot of money for travelling.” WRA- “I worry that it will cost a lot of money for travelling.” WRA- “Mother-in-law tells her, I’ve borne this for so many years, and you aren’t able to handle even this much.” WRA- “Mother-in-law tells her, I’ve borne this for so many years, and you aren’t able to handle even this much.” WRA- “In government setups, you have to stand in a queue. A lot of the time, they don’t see the patient properly and talk rudely.” WRA- “In government setups, you have to stand in a queue. A lot of the time, they don’t see the patient properly and talk rudely.” WRA- “Those who are not well read, they are not able to openly discuss their problems.” WRA- “Those who are not well read, they are not able to openly discuss their problems.” Gynaecologist- “The only restriction coming to this hospital (government) is the large number of patients who are there. They know they have to wait. They must get the card made in time and they must wait in the OPD. They know they have to spare at least the first half of the day if they want to show here. That’s the only restriction.” Gynaecologist- “The only restriction coming to this hospital (government) is the large number of patients who are there. They know they have to wait. They must get the card made in time and they must wait in the OPD. They know they have to spare at least the first half of the day if they want to show here. That’s the only restriction.”

This study provides a nuanced understanding of the barriers and facilitators influencing treatment-seeking for AUB among women of reproductive age in a rural Indian context. Most women preferred to seek care from government facilities, however the treatment seeking was often delayed owing to normalisation of symptoms. AUB was reported to adversely affect multiple dimensions of the woman's quality of life, including physical health, mental well-being, and daily productivity. The reported barriers to timely care-seeking were not limited to knowledge deficits but included embedded sociocultural stigma, limited autonomy, and inadequate availability of female healthcare providers. These findings, consistent with prior research, underscore the need for comprehensive interventions that address both beneficiary level challenges, such as stigma, discomfort discussing menstrual issues, and lack of awareness, and health system limitations, like limited availability of female healthcare providers, and service accessibility. Enhancing menstrual health literacy, ensuring gender-sensitive service delivery, and strengthening primary healthcare infrastructure are essential to improve early diagnosis and management of AUB and to promote equitable reproductive healthcare for women in low-resource settings.

The study found that there are varying levels of understanding regarding AUB. WRA believed that AUB is associated with increasing age and improper nutrition. WRA and MPW thought that Copper-T, abortion, anaemia can lead to AUB. The primary hindrance to seeking appropriate treatment was not only a lack of understanding about abnormal menses, but also the hesitancy to discuss these issues due to the social stigma attached, and limited availability of female doctors as well as healthcare facilities. Henry et.al reported lack of knowledge regarding normal menses being a major barrier to treatment seeking [ 13 ]. The major inhibiting factor for women in our study was not the lack of knowledge about AUB, rather, other deterrent factors like hesitancy in discussing their problems. DeStephano et.al reported that in case of perimenopausal irregular bleeding, women gathered information from many sources and were unable to understand how to make sense of the symptoms [ 14 ]. Liu et.al reported that HRQoL of women with AUB was below the 25th percentile of the general female population of the same age range [ 15 ]. Henry et.al reported that AUB had a significant and traumatic impact on the QoL of the affected females [ 13 ]. This is in-line with our study findings which report that WRA have to face mental, social and physical problems because of AUB. Brito et.al also reported that women with AUB-L faced limitations to social and professional activities [ 16 ]. In our study, women faced symptoms like weakness, malaise which affected their physical strength and their ability to perform daily chores. Laksham et.al reported women with menstrual disorders faced poor QoL in physical, psychological and social domains [ 17 ]. The WRA in our study also reported that they had to face mental trauma because of their conditions as they were unable to discuss their issues, even with their own family members. Henry et.al in a systematic review of qualitative studies reported that lack of female practitioners was a major barrier to seeking treatment for AUB [ 4 ]. A similar barrier was observed in our study, where women found it difficult to locate female doctors nearby. Lack of resources and time hindered their ability to travel for seeking medical consultation. Henry et.al also reported negative experiences of females with practitioners which was not the case in our study; the negative experiences WRA in our study faced were mainly due to longer waiting lines while consulting in government healthcare facilities. Henry et.al also reported females feeling embarrassed as AUB is considered a taboo topic. Similar findings were reported in our study, where females felt uncomfortable discussing these issues with their family members due to the historical social stigma attached with these. Findings from the study provide a deeper understanding of the perceptions of women and societal factors in play affecting their treatment seeking behaviour for AUB. This would guide policy makers to form strategies addressing barriers like poor knowledge, and non-availability of female doctors to improve healthcare for women in India. Insights from the study signify the need for implementation research in the area to improve quality of care and reduce the existing disparities for women health. Data was generated and analysed in Hindi. Analysis was done verbatim, and the analysed statements were later translated into English to prevent nuances from getting lost in translation. We included different stakeholders in order to explore various perspectives about AUB. The study has a few limitations. Firstly, purposive sampling from a specific rural community might have affected the transferability of findings to other settings. However, this is an inherent characteristic of qualitative research, which prioritizes in-depth understanding and insights over broader statistical generalizability. To address this, participants were included until data saturation was achieved and were selected to represent different demographic and social backgrounds. Secondly, the sensitive nature of the topic may have influenced the openness of responses. Social and cultural norms could have contributed to a reluctance in sharing personal experiences. To address these concerns, data collection was carried out in private spaces. While male investigators conducted some interviews, all sessions included female investigators, who led majority of the in-depth interviews and focus group discussions.

The qualitative study was conducted between September—November 2022 in Sahupura Village, under Primary Health Centre (PHC) Dayalpur, Faridabad, Haryana. The stakeholders included women of reproductive age (WRA) group, accredited social health activists (ASHA), multipurpose health workers—females (MPW), and gynaecologists. Key stakeholders were chosen following purposive sampling strategy. The study was conducted in accordance with the Declaration of Helsinki. Ethical approval for the study was obtained from the Institutional Ethics Committee, AIIMS, New Delhi (reference number: IECPG-726/29.09.2022). All participants were provided with the Participant Information Sheets (PIS) and written informed consent was taken. All records were kept confidential. Operational definitions—AUB (Abnormal Uterine Bleeding): Any abnormality in – regularity (variation: 2–20 days), frequency (24–38 days), heaviness of flow (up to 3 pads a day) or duration of flow (4–8 days) of menses [ 1 ]. WRA (Women of Reproductive Age): Women between 18–49 years of age. Undergraduate medical students (male and female) conducted interviews under the supervision of a female Senior Resident (SR) (MD, Community Medicine) trained in qualitative research and a male Junior Resident. Given the sensitive nature of the topic—abnormal uterine bleeding (AUB)—the female SR conducted the first two interviews to establish rapport and set an appropriate tone. Subsequent interviews were carried out by trained students in her presence to ensure methodological consistency. All interviewers underwent formal training in qualitative research methods provided by faculty from the Centre for Community Medicine prior to data collection. The interviewers had no prior relationship with the participants. During the informed consent process, participants were informed that the study aimed to explore perceptions and treatment-seeking behaviour related to abnormal uterine bleeding (AUB). Interviews were conducted at the subcentre in a private setting to ensure confidentiality and prioritize participant comfort throughout the process. The research team recognized that their clinical training could influence assumptions regarding participants’ treatment-seeking behaviours. To mitigate this, reflexivity was incorporated into interviewer training and supervision, encouraging ongoing critical reflection on personal biases and their potential impact on data collection. In-depth interviews (IDIs) and focused group discussions (FGDs) were conducted using self-developed guides (Supplementary file 1) with the stakeholders till the data reached saturation. These guides were developed based on literature review and expert inputs to explore perceptions of abnormal uterine bleeding (AUB), treatment-seeking behaviour, perceived impact, and barriers to care. They were pilot-tested to assess clarity, cultural appropriateness, and thematic relevance. Revisions were made accordingly. Nine IDIs and four FGDs were conducted including a total of 38 participants This comprised 32 women of reproductive age (18–49 years) from diverse sociodemographic backgrounds, including homemakers, women from different age groups, and socioeconomic status—29 who participated in four focus group discussions (FGDs) and 3 who took part in in-depth interviews (IDIs) to capture individual experiences. Eligible women were approached face-to-face in the community through ASHAs. Additionally, 6 healthcare providers were interviewed, including 3 ASHAs, 1 MPW, and 2 gynaecologists (Supplementary file 2). No participants refused to participate or dropped out of the study. Together, these participants offered a comprehensive understanding of the barriers to menstrual health care, reflecting both the experiences of women and the perspectives of healthcare providers. Field notes were taken during each interview to record observations and reflections on the process. FGDs and IDIs were conducted in the local language (Hindi) and were audio recorded and transcribed verbatim. Transcripts were analysed manually by two independent coders in Hindi language, and later translated to English language to avoid findings being lost in translation. Transcribed word files were password protected and verified. The data was recorded and analysed using the six steps prescribed by Braun and Clarke. Steps included were – familiarising with the data, generation of codes, sorting and analysing the coded data to fit in the overarching themes, reviewing the identified themes and refining followed by defining and naming of themes, and finally, writing the results in line with the outlined themes [ 12 ]. Sociograms were used to present the interaction in FGDs.

A normal menstrual cycle is defined by frequency (every 24–38 days), regularity, heaviness (between 5–80 ml) and duration (lasting for 4.5 to 8 days) [ 1 ]. Abnormal uterine bleeding (AUB), including the sub-term heavy menstrual bleeding (HMB), refers to excessive, erratic or prolonged blood loss that interferes with a woman’s physical, mental, social well-being as well as quality of life [ 1 – 3 ]. Since some components of the diagnosis are subjective, it is difficult to determine the exact prevalence. AUB is reported to occur in 3–30% of women between menarche and menopause. Etiology of AUB can be classified as “related to uterine structural abnormalities” and “unrelated to uterine structural abnormalities”, and can be further categorised as Polyp, Adenomyosis, Leiomyoma, Malignancy and hyperplasia, Coagulopathy, Ovulatory dysfunction, Endometrial, Iatrogenic, and Not otherwise classified. AUB can lead to complications like anaemia, hypotension, shock, infertility, and even death. Hence, it should be treated as early as possible to restore the normal menstrual health of the affected female [ 1 ]. Barriers for seeking treatment for AUB fall under three themes: poor health literacy, taboo, and health care provider preferences [ 4 , 5 ]. The absence of appropriate knowledge regarding AUB has come across as a major barrier for women seeking treatment for the same [ 6 , 7 ]. AUB has a major impact on health-related quality of life (HRQoL) leading to decreased productivity and absenteeism from work [ 8 – 10 ]. A study estimated indirect costs due to AUB—heavy bleeders worked 3.6 weeks fewer per year than non-heavy bleeders. The work-loss from increased blood flow is estimated to be $1692 annually per woman [ 11 ]. Treatment seeking barriers to AUB occur at the level of both patients (health literacy, social taboo) as well as healthcare (lack of female gynaecologists). A better understanding of the perceptions and beliefs of women of reproductive age (WRA) group regarding AUB will pave the way towards addressing these issues at a community level. The aim of this study was to understand the perception and treatment seeking behaviour for abnormal uterine bleeding (AUB) among women of reproductive age (WRA) group in rural Haryana.

Supplementary Material 1. Interview guides for focus group discussions (FGDs) and in-depth interviews (IDIs). Supplementary Material 2. Participant characteristics and details of FGDs and IDIs conducted. Supplementary Material 1. Interview guides for focus group discussions (FGDs) and in-depth interviews (IDIs). Supplementary Material 2. Participant characteristics and details of FGDs and IDIs conducted.