A qualitative study on gender barriers to access cataract surgery in rural Gurugram,Haryana,India

Introduction

Blindness is a global public health concern. In 2010, it was estimated that almost 36 million people were blind, and by 2050, that number is projected to increase to about 114 million (Lou et al., 2018; Prasad et al., 2020). According to the Global Burden of Diseases (GBD) Study 2010, despite being easily curable, cataract remain a major cause of blindness, leaving 10.9 million people without sight and 35.1 million with moderate to severe visual impairment (Bourne et al., 2013; Khairallah et al., 2015; Pascolini & Mariotti, 2012).

Around the world, there are more women than men who are blind or have a moderate to severe vision impairment. In addition, the growth rate of blindness among women was four times higher than that of men between 1990 and 2010 (Jonas et al., 2014). Relative odds ratio of visual impairment owing to cataract among men versus women is 1.21 (80% UI: 1.17–1.25), according to a 2017 Lancet study (Seth et al., 2017). According to a study published in the Lancet Global Health journal in 2021, there were 43.3 million (95% UI: 37.6–48.4) blind persons worldwide, with 23.9 million (55% UI: 20.8–26.8) women. Around 163 million (55%; 147–179) of the 295 million (267–325) people with moderate and severe vision impairment were women. Around 142 million (55%; 128–157) of the 258 million people (233–285) with minor vision impairment were also women (Lancet Global Health, 2021).

The majority of the world’s blindness burden comes from South Asia, where there are 12 million blind people and 61 million people with moderate to severe visual impairment (Bourne et al., 2017). The majority of blind people in the world, with a vision acuity of less than 6/60, reside in India. The number of cataract surgeries performed per million individuals annually in India has increased from little over 700 in 1981 to 6000 in 2012. This is substantially closer to the 8000–8700 cataract surgeries per year that are thought to be necessary in India to completely eradicate cataract-related blindness (Murthy et al., 2014). However, out of the 40–45 million blind persons worldwide, more than 19 million of them live in India. Up to 80% of these blindness cases might be screened for and/or avoided with the right screening procedures and management services for eye care (Kaur, 2018).

The first nation to introduce the National Programme for Control of Blindness was India in 1976. By the year 2020, it was intended to have a 0.3% prevalence of blindness. India has undergone significant social and economic changes, yet among rural and vulnerable groups of the population, including women, the prevalence of preventable blindness is still high (National Programme for Control of Blindness, 2019).

Around the world, gender continues to be a significant barrier to the uptake of cataract surgery. Even in developed countries, women’s visual acuity was shown to be worse than men’s, and they waited longer to have cataract surgery (Jonsson et al., 2006; Lundqvist & Mönestam, 2008). In low- and middle-income countries, men are 1.7 times more likely than women to undergo cataract surgery, which highlights the stark gender gap (Abou-Gareeb et al., 2001; Lewallen et al., 2009). World-wide women have a higher cataract burden than men, and comparable trends are observed in India. According to a meta-analysis released in 2018, women in India had a 69% higher risk of cataract blindness and a 35% higher risk of becoming blind than men.

The analysis of the combined data showed that one-third of the prevalence of blindness (35%) and cataract blindness (33%) was due to the individuals’ gender (Prasad et al., 2020). According to a recent meta-analysis study by Prasad et al., women have less access to cataract surgery than males do. If the gender gap were to be addressed, women’s access to cataract surgery would increase by 133.4% (Prasad et al., 2020; Ye et al., 2020). Studies show that rates of blindness are higher in rural areas with low economic growth and high levels of poverty. In comparison to their urban counterparts, there are more visually impaired women in rural areas (Dandona et al., 2001; Finger et al., 2012; Wan et al., 2020). For instance, research in rural India revealed that women, poor, rural residents and patients aged 70 or older who underwent cataract surgery had less than ideal visual outcomes (Fant, 2017). Social, economic and cultural barriers severely impede women’s access to health care. According to all relevant markers of symptomatic illness, women are diagnosed with conditions that are more severe than those that men have when they visit an eye care centre (Jayaraman et al., 2013). Despite an increase in surgery over the past 10 years, cataract continue to be the main cause of blindness in India, particularly among women. This also results from a lack of knowledge, socio cultural barriers and access to reasonably priced treatment choices for women (Joshi, 2015).

Women often prefer to visit nearby eye camps rather than the somewhat farther-off static facilities due to social and economic constraints, lack of transportation and household responsibilities (Bachani et al., 1999). Additional barriers include the high cost of modern cataract surgeries (microincision phaco and intraocular lens implantation) and families’ tendency to prioritise investing in men because they are the primary breadwinners in the household. Women delayed surgery longer than males, sought assistance only when vision was clearly a problem, and more frequently thought eye check-ups were not as important as other health issues (Dole, 2013). Women frequently prioritise household responsibilities over their health because of social standards and the traditional position of the primary caregiver in the family. In the paid hospital, women are less likely to be admitted at least one night prior to cataract surgery (Jayaraman et al., 2013). Women often take care of the majority of the family’s needs, this uncertainty might occasionally be an indication of domestic and financial pressures.

Rural residents frequently place greater value on traditional eye medicine (TEM) than seeking out appropriate medical care (Choudhary et al., 2015). Due to the availability of a wide range of pharmaceuticals, many choose to visit pharmacies to buy medications on the advice of the pharmacist. The type of cataract, which finally results in vision problems and a loss of visual acuity, is influenced by the belief that these TEMs are efficient and useful as well as by people’s reluctance to seek medical attention. Women’s health decisions are influenced by a cyclical and intermittent combination of socioeconomic limitations, cultural norms and a lack of educational and employment options in rural areas (Kaur, 2018).

Studies on the behavioural patterns of women’s health seeking have not been conducted in Haryana. This study aims to identify gender variations in cataract surgery accessibility in the Gurugram district of Haryana’s rural communities. A large portion of the people in the northern Indian state of Haryana relies heavily on agriculture for their income. With the third-highest per capita income in India, Haryana emerged a well-developed state in less than 40 years (Seetharaman & Katiyar, 2019). Despite economic growth, the status of women in society has not significantly changed. According to the 2001 Census, it has one of the most uneven and highest male: female child gender ratios (122 males per 100 females) in the nation.

In addition, the National Family Health Survey (1998–1999) results for Haryana indicate that while the infant death rate and preference for extra children, particularly males, are fairly high in Haryana compared to the national average, other factors such as age at marriage, female education and contraceptive prevalence are lower in Haryana (Agrawal et al., 2013). According to a 2017 government of Haryana study, only 25.6% of girls had average health, which is indicative of this difference. Women are financially dependent on men, as evidenced by the fact that just 9% of them work in government jobs, and only 3% are in corporate jobs (Chahar, 2018). Planning eye care services effectively requires population-level data on visual impairment from rural areas. Although the study is conducted in rural Gurugram, its findings can be applied to other rural settings and provide insight into the challenges of receiving cataract surgery.

Aims and objective

The goal of this study was to analyse gender bias in cataract surgery coverage in a rural Gurugram, Haryana, by having an insight of attitudes, societal norms and the details of women’s accessibility to cataract surgery.

Material and methods

At a teaching hospital affiliated with a university, data from 100 consecutive male and 100 consecutive female cataract surgery patients were analysed over the course of 6 months in 2020. The hospital is located in a rural area of the Gurugram district and serves primarily rural population of the state of Haryana. All patients provided their informed consent, and their identities remain confidential. The study is divided into a qualitative formative phase and a quantitative measurement phase to understand the barriers to access cataract surgery. For quantitative analysis, the better eye and the operated eye’s vision were measured using a Snellen chart, and for simplicity of data processing, the measurements were converted to decimal notations as per the International Council of Ophthalmology Report 2002. The definition of visual impairment followed the guidelines provided by the WHO. When the better eye’s visual acuity was less than 6/18 (0.32), visual impairment was taken into account. When the better eye’s visual acuity was <6/18 (0.32) and >6/60 (0.1), it was considered to have moderate visual impairment. When the better eye’s visual acuity was <6/60 (0.1) and >3/60 (0.05), it was considered to have a severe visual impairment. Better eye’s visual acuity less than <3/60 (0.05) was considered as blindness. Slit lamp analysis was used to categorise the morphology of the cataract in the operated eye into seven primary categories: pure nuclear sclerosis (NS), pure cortical (C), pure posterior subcapsular (PSC), combined NS + C, combined NS + PSC and combined PSC + C cataract. A mature cataract (M) was defined as one in which the lens was entirely opaque (M). The American Cooperative Cataract Research Group’s recommendations served as the foundation for this sub-classification (Chylack et al., 1984).

One of the authors carried out the categorization of the lenses. The hospital provides phacoemulsification with a foldable IOL and manual SICS with a rigid IOL as two different types of cataract procedures. The price of manual SICS is INR 2500, while the price of phacoemulsification is INR 5000, which includes the cost of the IOL and any other surgical consumables required during the procedure. At the time of cataract surgery, it was found that 64% of female patients had moderate or severe visual impairment in the better eye. Only 37% of men, however, fell into the same category of visual impairment. In addition, at the time of operation, 7% of females versus 4% of males were blind. Patients who choose phacoemulsification with a foldable IOL were more likely to be men (71%), while those who selected manual SICS with a rigid IOL were more likely to be women (44%). A quantitative investigation revealed that women opted for less expansive procedure than males and experienced severe visual impairment. In-depth interviews (IDIs) and focus group discussions (FGDs) were used in this study to fully explore the nuances of the barriers to accessing cataract surgery.

We chose 15 women at random for in-depth interviews who had been diagnosed with cataracts and had severe visual impairment. The oldest was 75 years old, the youngest was 45, four were between the ages of 50 and 55, and 10 were beyond the age of 50. Women were asked open-ended questions in Hindi, their native tongue. Most of the women in this survey were stay-at-home mothers or employed in the unorganised sector. More over half of the women had three or four children and had no formal schooling. More general questions were asked to begin a conversation in an effort to develop rapport with the respondent. The duration of IDIs and FGDs was roughly 25 min. For analysis, the interviews were recorded, transcribed and translated into English. Using a codebook created specifically for the study, we manually coded the data using a thematic analysis approach. To narrow down and provide precise theme groups and codes, a preliminary analysis of the raw data were first carried out. Keywords representing themes in the transcripts were incorporated in the codes. The data collected in these broad categories were given more specific descriptive sub-codes. Then, searches were made for each sub-code to compile all interview text associated with each theme. In order to identify patterns in the data according to source and summarise perspectives on barriers to accessing eye health services, tables were made listing the main themes, subthemes and all quotes linked to each subtheme. Sociocultural factors, lack of agency, organisational/institutional factors and economic factors were the four main themes that emerged.

Ethics statement

The study received approval from the hospital’s ethical committee (SEC/FMHS/F/27/05/21-47) and adhered to the principles of the Declaration of Helsinki.

Data analysis

The women who were interviewed stated that they had experienced visual problems for anything from 6 months to 3 years; 59% of them had cataracts for between 1 and 2 years; 10 % had them for between 2 and 3 years; and 31% had them for more than 3 years.

Sociocultural factors

Significant sociocultural factors include patriarchal attitudes, deeply embedded gender stereotypes and higher power disparities within the community. Women faced obstacles due to their multiple roles and responsibilities. The interaction of several gender-specific roles affects their access to eye care services. Since most often a woman – usually a daughter or daughter-in-law – was responsible for care giving post-surgery, their role in determining the procedure’s timing became crucial.

‘My daughter-in-law and I take care of all the housework. I would stay in bed if I had eye surgery, and my daughter-in-law needed rest if she was expecting. After the birth of my grandson, I waited for one year to schedule for cataract surgery. Who will take care of the home and the animals if neither of us is available to take over the responsibilities?’. (Female participant, 65 years old)

Women who could not travel alone sought treatment at the local clinics. According to 50% of respondents, when they first complained of low vision, a family member purchased eye drops from a nearby pharmacy. The majority of respondents – nearly 90% – said they have tried traditional remedies including rose water, Ghee (clarified butter made from cow milk), onion juice and others. Once the vision loss began to disrupt their daily lives and alternative treatments, including home remedies, proved ineffective, 60% of women sought the advice of unlicensed doctors.

Fear of surgery, according to 50% of respondents, motivated them to forego treatment. ‘Some patients who undergo surgery don’t recover; instead, they become completely blind. Since I was able to manage most of the work I delayed the surgery’ (female participant, 55 years old). The 30% of female participants also displayed a range of beliefs about eye health, including the notion that vision loss is an inevitable but natural part of ageing and that better vision following surgery necessitates a long recovery period that includes lying in bed all day in the dark room and only occasionally getting out of bed.

Lack of agency

Women have less control over their own health as compared to men. They claimed that getting access to health care frequently required negotiating with their husbands and/or families. One of the impediments that has a strong connection to gender norms is the limited decision-making autonomy of women. About 80% of women interviewed said they had a conversation with family members about the necessity for surgery after being diagnosed with cataract; married women spoke with their spouse about the possibilities, while widowed women spoke with their children. The importance of intra-familial decision-making is shown by the fact that most women do not decide to have surgery on their own. Families want to plan for surgery as per their convenience and sometimes important festivals and marriage within the family cause further delay.

About 60% of the women claimed that despite having cataracts and being advised to have surgery at an outreach camp, they decided to wait because they needed someone to accompany them and that person did not have time to drive to the hospital. In addition, everyone gave the advice to wait for cataracts to mature. Older widowed women without a source of independent income are more likely to become dependent. The cost of the surgery is typically split by adult children for widowed mother seeking cataract surgery, and decision-making is a group effort requiring consensus.

Economic factors

Women’s access to surgery was significantly hampered by economic issues as well. The majority of research participants experienced serious financial hardship. Respondents reported an average of six individuals per home, with the majority of households relying on agricultural income and occasionally having just one wage earner. One of the key factors influencing women’s decision-making capacity is the confluence of low decision-making autonomy on the part of women and the expense of the procedure, travel and other logistics in the setting of limited household financial resources. It should be noted that 50% of women claimed to be unaware that the surgery was also offered at a lower cost. None of the women who were interviewed had a source of independent income. The choice of manual SICS was made mostly due to cost, because it was less expensive was mentioned by 50% of the respondents.

Organisational/institutional factors

The contemporary hospital setting might appear intimidating and complex to patients who are unfamiliar with the health care system, particularly visually impaired patients from remote locations. This could dissuade people from seeking eye care services, especially poor rural women. In addition, they discovered that while the Indian government guarantees the right of poor patients to free or discounted care at public facilities, this was rarely the case in their experience. It was evident that participants frequently found it difficult to make good use of these financial support programmes. About 90% of the respondents either had no knowledge of health-related programmes or had no idea how to access financial assistance through the system.

Discussion

The processes that render women susceptible to health inequities at various levels have been explained with the aid of feminist political economy methodologies that have been used in health research (Doyal, 1995). The key determinants influencing women’s social conditions and health, according to feminist political economy of health, are physical and cultural discrimination (Syed, 2021). Social, economic and cultural variations can be used as an explanation for gender disparities in cataract surgery coverage also. Access to treatments for cataract surgery for women is still an issue in much of the world, according to several research (Chahar, 2018; Lewallen et al., 2009; Prasad et al., 2020; Rao et al., 2011). Globally, cataract-related blindness would decline by around 11% if women had equal access to cataract surgery as men, signalling advancement in eye health care worldwide (Courtright, 2009).

Women encounter challenges throughout every step of their journey towards better eye health. These barriers might be anything from individual attitudes and ideas about eye health to sociocultural barriers within the family and in society at large to institutional and financial challenges. Their ability to receive treatment is constrained by the geographic location of facilities, the charges and transportation (Lewallen & Courtright, 2002; Malhotra et al., 2018). The greatest barriers to women’s access to eye health care services, according to data from different countries, are lack of information, surgical anxiety and the expense of surgery (Briesen et al., 2010; Neyhouser et al., 2018; Orbis, 2016). Women frequently are not in a position to prioritise their own health because of their sociocultural status. In addition, the complex family decision-making process forces female patients to wait or bargain for support from their relatives (Geneau et al., 2005; Nanda, 2002). Widowed mothers are a group that is particularly vulnerable because of their dependency on their children in most countries. In Sri Lanka, they make up 18% of the population but are responsible for 54% of those who are blind from cataract, while widowed women make up 19% of the population in Nigeria but account for 56% of those who are blind from cataract (Ramke et al., 2019). These results are in line with what is already known concerning gender-based restrictions on access to health care in other contexts.

Better eye health for women starts with addressing sociocultural barriers. Women of different age seek advice from their social networks as they weigh the advantages and disadvantages of various treatment options. As a result, eye health services ought to make an effort to sway unofficial information sources, particularly adult children who play a significant role in decision-making. It is important to recognise the ‘cyclical effect’ of barriers since, by addressing sociocultural obstacles, barriers related to transportation and cost, other obstacles can also be removed.

Strength and limitations

Qualitative research gives us access to rich data that enable us to examine and comprehend intricate social phenomena and their complexities. The study was carried out in a rural Gurugram region. However, given that the majority of rural women in India frequently deal with the same social circumstances and realities, we think the findings may be applicable to other regions of the country. Our study team included both social scientists and medical professionals, which enhanced our ability to analyse the data. The interdisciplinary structure of the study team is a strength that has allowed it to successfully navigate any challenges.

Local languages were used for the interviews, and it was difficult and time-consuming to translate the interviews into English for analysis. It is possible that the translation process masked certain semantic details. Therefore, meaning rather than terminology was the main emphasis of the translation process. A male perspective and a comparison of the obstacles men face in getting cataract surgery are missing from the study.

Conclusion

This study comes to the conclusion that gender is still a significant impediment to cataract surgery coverage in rural Gurugram, Haryana. Although economic indicators have improved noticeably, there is still a public health concern about the gender gap in health care utilisation. More work must be done to increase the female population’s use of eye care services. Simple approaches to address this issue include modifications to gender-specific policies. In order to close the gap, it would be helpful to have a better understanding of the variables influencing men’s and women’s individual uptake of cataract services.

Recommendations

There is gender prejudice in the use of health care services. It is important to take gender-specific barriers to cataract surgery into account while implementing programmes to prevent blindness. When women are recommended for surgery, it is critical to include their families in counselling sessions so that everyone may discuss the potential advantages of sight-restoring surgery, consider transportation arrangements, and clear up any misconceptions. Depending on the marital state of the women, it is crucial to determine who makes the major decisions because the husband, children, or siblings may be the ones who decide whether or not the woman gets surgery. Since post-surgical care is a critical factor that contributes to delays, a mechanism that offers a thorough plan and at least 1 week of care in a hospital setting must be devised. Organisational changes are needed, such as quick access to hospital facilities and a thorough system free of bureaucratic delays that enable people to take advantage of government programmes.