When Dr. Samina Khalid gave birth about two decades ago in Pakistan, her firstborn baby nearly died. At the time, she wished that her doctor would just listen to her.
“The doctors did not realize [the umbilical cord] was around my daughter’s neck. I was going through labor, but the baby was not coming down,” Khalid says. “I [felt] so helpless, and I kept telling my obstetrician that I am having pain. [But] she just said, ‘You are having false pains, these are not real pains.’” After the baby’s heartbeat plummeted, Khalid says, it was a miracle her daughter survived.
This harrowing experience stayed with her and motivated Khalid to oversee a large-scale survey of a quarter-million Pakistani women, centered around a single open-ended question: “What do you want for your maternal and reproductive health care?”
This was part of a worldwide effort conducted by the White Ribbon Alliance, a grassroots nonprofit focused on decreasing maternal and newborn deaths. The global survey, called “What Women Want,” collected the voices of 1.2 million women and girls age 15 and above in 114 countries, from the villages of Pakistan’s Sindh province to Kenya’s nomadic Maasai communities. Survey collectors visited women in their homes, at colleges, churches, health clinics, and even at a music festival in the United Kingdom. Remarkably, almost half of the total responses came from India and Pakistan.
So, what do women want? The most common answers, with more than 100,000 responses were respect and dignity. They asked for doctors and nurses to be kind, to not dismiss their opinions, and to listen to their needs. The desire for running water, sanitation, and hygiene in health care facilities were next on the list, with basic medicine and supplies a close third.
Learning what women and girls actually want
The survey collectors—a mix of women and men—received a set of guidelines before they set off. The most important rule was that women and adolescent girls have to give informed consent and fully understand that their answers might be presented to policymakers. The surveyors asked the participants to write their responses on paper, with the option to record their answers if they were illiterate.
In many areas, the survey collectors served their own communities. “Instead of sending strangers, we involved people from the same area, so [women and girls] could confide in them, and they felt there is someone to listen to them at last,” Khalid says.
Winfred Ongom, a 26-year-old nutritionist in Uganda, personally collected responses from 8,000 women and girls in the northern part of her country. She joined this project, in part, because of her own sister’s experience of getting insulted in a hospital while giving birth.
The staff told Ongom’s sister she was “too lazy to push” when she requested a cesarean section after a full day of intense labor. They refused the C-section and Ongom’s sister was in labor for two days, facing major complications. “I realized no woman should go through this,” Ongom says.
In Kenya, Angela Nguku traveled across her country to interview women. “No one had ever asked them ‘what is your top-most request for quality reproductive health services?’ They thought they have no power, no right, and here we are giving them power to be able to say these things,” says Nguku, a former midwife who oversaw the survey in Kenya. She says they opened up when they realized they could talk about their needs freely.
Nguku says her midwifery training never touched on what she ultimately discovered in the survey results. “No one told me that respect and dignity was the most important thing that women needed when they come for health care. But, see, it’s topping the list,” she says. “I was told drugs, medicines, supplies, ultrasounds, ambulances [are the most important] when I was in school,” she says. “So, it was like everything toppled, the pyramid changed.”
Persuading policymakers to take real action
The survey idea originated in India, and then grew into a larger campaign. “Things were looking up in our country, we had a lot of good stuff happening, but we knew there was something missing,” says Dr. Aparajita Gogoi, who co-chaired the campaign and directs the Centre for Catalyzing Change in India. “What was missing was the voices of women.”
To persuade policymakers to take real action, Gogoi says, “we wanted to take [those voices] to the highest levels of power.” So, on India’s National Safe Motherhood Day, 150 women from the survey stood in front of the country’s health minister and presented a list of their demands. He listened, and India is already starting to see changes. After hearing from the women, the health minister launched a new national initiative to improve labor rooms in hospitals, and included respectful care as a central priority.
The survey results also prompted India’s nursing association to fix the root cause of the problem: They’re writing a new chapter on respectful care for textbooks that every nurse across the country will read in school.
“This is the national body of nurses, so whatever they do impacts all the nurses in all the states,” Gogoi says. The updated textbooks will cover the main principles of respectful care: treating patients with dignity, patients’ rights, the importance of patient consent, and confidentiality. While these may seem like basic health care tenets, it’s not the case everywhere.
In India, women from poorer areas are commonly physically slapped by health providers, Gogoi says. Sometimes medical practitioners even begin invasive physical procedures without telling the patient. In the new textbook, nurses will learn about the importance of respectful care before they can graduate and get jobs.
In the sub-Saharan nation of Malawi, many women made another simple, but very important request: hygienic maternity wards. The local survey team used the data to lobby for better sanitation in health centers. In northern Malawi’s Chitipa District, local leaders committed to building a new maternity wing with renovated plumbing systems, new toilets, and running water in four health facilities.
In the countries that got the most survey responses (Mexico, Nigeria, Uganda, Kenya, Tanzania, Malawi, India, and Pakistan), White Ribbon Alliance will organize town-hall style forums for women and girls to speak directly to decision-makers.
The most important voice
“The simplicity of the messages was pretty profound and moving,” says Dr. Dilys Walker, who leads the Global Maternal and Newborn Child Health Research Cooperative at the University of California San Francisco (UCSF) Institute for Global Health Sciences. “[The campaign was] remarkably successful at keeping the story very personal, and keeping it very clearly the voices of women around the world,” she adds.
Walker and other global health experts say the survey presents already-known information, but it has the power to create policy change by sending a strong message to leaders. “It’s the most important voice if we’re able to hear it,” says Walker, who has worked in this field for decades. “Some of the approaches my colleagues and I use may document and uncover things, but they may not necessarily change things, because they tend not to provide messages that policymakers can grab onto,” she adds.
The gender equality experts at Ladysmith, Dr. Tara Cookson and Dr. Lorena Fuentes, commended the survey’s emphasis on women speaking for themselves. “Making sure women’s accounts of their own lives ‘count’ as evidence is so important,” they say.
Ladysmith says asking an open-ended question can help women explain their needs within their own geographic and cultural context. “[This survey] can do this in a way that standard surveys just can’t,” Cookson and Fuentes say.
“It’s significant that [this] initiative went beyond simply collecting data—they connected it to pathways for action,” Cookson and Fuentes say. However, they also note that What Women Want did not delve into how to finance health care upgrades. “[These changes] require adequate public financing, and the report comes short of highlighting pathways for states to take action at a high-level.”
Dr. Walker from the University of California in San Francisco is also concerned some policy-makers will think there’s an easy fix to these problems. “It’s not about going to a two-hour training on respectful care and things will get better,” Walker says, adding that it has to be a “more integrated, comprehensive behavior change approach.”
In Pakistan, Dr. Samina Khalid’s Islamabad office is packed with boxes full of survey answers. “When I look at these boxes, I realize these are not boxes. These are voices of women, these are expectations of women,” she says. “I don’t want to bury these. I want them to be heard, and I want them to be implemented.”
She pulls out the story of a young bride who took a break from her own wedding to answer the survey. Wearing her traditional red bridal dress and jewelry, she said she wants to see more trained community midwives. “This was so important for her, that she had to take the time out of her wedding and share what she wants for health services,” Khalid says.
“We cannot even imagine what kind of problems women go through in their communities. There is no one to hear them,” she adds. Khalid says they have taken the survey results to parliamentarians, because “we want to ensure that these stories are not going down the drain.”
Sonia Narang is a multimedia journalist who covers women’s rights, health, and climate change around the world. Sonia’s radio and video work also airs on PRI’s The World, and she’s reported for NPR, The New York Times, PBS NewsHour, and the BBC.