‘This is normal during pregnancy’: A qualitative study of anaemia-related perceptions and practices among pregnant women in Mumbai, India

‘This is normal during pregnancy’: A qualitative study of anaemia-related perceptions and practices among pregnant women in Mumbai, India

Midwifery 30 (2014) e56–e63 Contents lists available at ScienceDirect Midwifery journal homepage: www.elsevier.com/midw ‘This is normal during preg...

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Midwifery 30 (2014) e56–e63

Contents lists available at ScienceDirect

Midwifery journal homepage: www.elsevier.com/midw

‘This is normal during pregnancy’: A qualitative study of anaemia-related perceptions and practices among pregnant women in Mumbai, India Nilesh Chatterjee, PhD, MA, MBBS (Head, Research & Evaluation)a,n, Genevie Fernandes, MA (Consultant Researcher)b a b

Johns Hopkins University Center for Communication Programs (JHUCCP), New Delhi, India Kalyani Media Group, Mumbai, India

art ic l e i nf o

a b s t r a c t

Article history: Received 20 May 2013 Received in revised form 16 October 2013 Accepted 20 October 2013

Objectives: to explore anaemia-related perceptions and practices among pregnant women in Mumbai, India. Design: descriptive qualitative study using in-depth interviews and focus group discussions. Setting: three government-run maternity hospitals in Mumbai, India. Participants: 31 pregnant women aged 18–33 years; three women completed higher secondary school; 28 were homemakers. Findings: respondents described anaemia as ‘lack of blood in the body’ because that was the term used by health providers; yet they did not seem worried about the consequence on their own health. Women perceived anaemia as ‘normal during pregnancy’ because their body had to simply share resources with the fetus and every female relative had suffered from it during pregnancy. Respondents did recognise weakness and dizziness as symptoms of anaemia. They attributed the cause to a poor diet, but did not know the specific link with iron-deficiency. They listed various negative effects of anaemia on the fetus, but very few stated ill-effects on the mother, and none stated maternal death as an outcome. Women saw their role primarily as child-bearers and prioritised newborn's health over their own. Conclusion and implications: anaemia stands at the intersection of health, nutrition, culture and gender. Interventions in the country have to go beyond distributing or monitoring compliance with iron–folic acid (IFA) supplements. Health education programmes for women and household members have to highlight the seriousness of anaemia and address socio-cultural norms and gendered behaviours in families with respect to nutrition and health. There is an urgent need in maternal and child health programmes to emphasise the importance of the mother's own health. Anaemia interventions have the potential to become proxies for women's health and empowerment programmes. & 2013 Elsevier Ltd. All rights reserved.

Keywords: Anaemia Pregnancy Perceptions India

Introduction Anaemia is a serious health problem in India. Data from the third round of National Health and Family Survey (NFHS-3) showed a high prevalence of anaemia – 56% of all women and 59% of pregnant women (IIPS and Macro International, 2007). Analysis of two rounds of cross-sectional, nationally representative data collected as part of National Family Health Surveys (NFHS) from 164,600 ever-married women aged 15–49 years from 25 Indian states in the NFHS-2 (1998/1999; n ¼79,197) and NFHS-3 (2005/2006; n ¼ 85,403) revealed that prevalence of anaemia had increased significantly from 51% to 56% over the 7-year period

n

Correspondence to: Flat No. 9, Rekha Apt. (2nd floor), Mumbai 400089, India. E-mail address: [email protected] (N. Chatterjee).

0266-6138/$ - see front matter & 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.midw.2013.10.012

(Balarajan et al., 2013). The percentage of maternal deaths caused by haemorrhage is greater in India than in the rest of the world and has been attributed to higher rates of anaemia in Indian women (Registrar General of India, 2006; Center for Reproductive Rights, 2008). Even in the city of Mumbai, the commercial capital of India, nearly half of all married women (47.7%) and almost three in five (59.2%) pregnant women were diagnosed with anaemia (IIPS and Macro International, 2007). Anaemia was also reported to be one of the major causes of the 206 maternal deaths in the city in 2010 (Shelar, 2010; Advani et al., 2011; Vora, 2012). Anaemia is particularly high in women in the lowest wealth quintiles. Balarajan et al. (2013) found that in both NFHS-2 and NFHS-3 wealth was a stronger indicator of anaemia, even more than education. Anaemia was positively associated with lower wealth status, lower education and being part of scheduled tribes and scheduled castes.

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Anaemia continues to persist despite India being one of the first among developing countries to launch a National Nutritional Anaemia Prophylaxis Programme in 1970 consisting of antenatal nutrition counselling and provision of Iron and Folic Acid (IFA) supplements containing 100 mg elemental iron and 0.5 mg folic acid for daily consumption to all pregnant women during pregnancy and lactation (Ministry of Health and Family Welfare, 1991; Ministry of Women and Child Development, 2007; National Institute of Health and Family Welfare, 2012). Compliance with IFA supplements remains particularly low, with only 31% of pregnant women at the national level consuming IFA for 90 days or more during their pregnancy (UNICEF, 2010). The high prevalence of iron-deficiency anaemia among women in India has been attributed to the poor absorption of iron (3–4% only) in the phytate and fibre-rich, predominantly vegetarian diet, and chronic blood loss due to malaria and hookworm infestations (National Nutrition Monitoring Bureau, 2002; Toteja and Singh, 2004). Indian women also have a sustained low intake of iron (Ramachandran, 2007). Data from the National Nutrition Monitoring Board surveys conducted in nine states during 2004–2005 found that women's iron intake is around half of the recommended daily allowance (National Nutrition Monitoring Bureau, 2006). Furthermore, more than a third of reproductive-age women in India are undernourished, with a Body Mass Index (BMI) less than 18.5 (IIPS and Macro International, 2007). The problem of anaemia starts early in Indian women; prevalence in adolescent girls is 56% (IIPS and Macro International, 2007). With the lack of intake of nutritional supplements, exposure to infections and early marriage, most Indian women enter pregnancy with an already depleted iron condition increasing their risk of anaemia. Despite problems of poor coverage and low compliance, oral iron therapy is also not effective in the correction of moderate or severe anaemia in Indian pregnant women because of the short timeframe available for remediation during pregnancy and the poor absorption of iron in the Indian diet (Indian Council of Medical Research Task Force Study, 1992; Ministry of Women and Child Development, 2007). If anaemia is to be tackled effectively, then apart from governmental programmes supplying IFA supplements, a strong push to generate anaemia-reduction behaviours at the individual, family and household levels is also necessary. Behaviour change programmes require a better understanding of audiences' perceptions of the severity and seriousness of anaemia, and the barriers and triggers that respectively impede and motivate people to adopt healthy behaviours. Very few studies have documented Indian women's perceptions and attitudes towards this condition. A technical working paper published by Bentley and Parekh (1998) used various qualitative techniques to examine perceptions of anaemia and health-seeking practices of pregnant women from four Indian states of Haryana, Gujarat, Tamil Nadu and Karnataka. They found that women often used local terms to describe clinical symptoms or the sequelae of anaemia. Women were generally aware of the link between inadequate diet, short birth-interval and anaemia. They were also aware of the availability and recommendations to consume IFA during pregnancy, but did not adhere to it because of side-effects and lack of understanding of its benefits to their own health. The authors recommended the development of specific messages for women that explain how IFA supplements can alleviate symptoms of anaemia. Galloway et al. (2002) studied women's anaemia-related perceptions in eight developing countries, including India, and reported that women had low levels of knowledge about anaemia and did not consider it to be a priority health concern that required action. This qualitative study conducted in the city of Mumbai examined anaemia-related perceptions and practices of pregnant women, especially from low-income communities, with the aim

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of generating insights to design appropriate health education and communication interventions.

Methods Study setting This study was conducted with pregnant women attending three maternity hospitals in Northern Mumbai under the jurisdiction of the Department of Public Health of the Municipal Corporation of Greater Mumbai (MCGM). Previous studies have found that 61% of women from low-income communities in Mumbai used public health care services for antenatal care and childbirth (More et al., 2009); these maternity hospitals are the first point of care for pregnant women. Each maternity hospital is led by the Chief Medical Officer, and managed by resident doctors, nurses and nutritional counsellors. In case of complications, pregnant women are sent to a general or a specialised hospital depending upon the requirements (The Bombay Community Public Trust, 2012). Sampling Permissions and consent for this study were obtained at three different levels. First, the research study was explained in detail to the Chief Medical Officer in-charge of administration, and permission to conduct interviews on the premises was obtained before starting the actual interviews. At the second level, the actual providers, which included resident doctors and nutritional counsellors of the three maternity hospitals, were explained about the objective of the study and their permissions and consent taken. Due to the large volume of patients, pregnant women visiting antenatal clinics at the selected maternity hospitals have a typical waiting period of 30 minutes to an hour before they get to meet the doctor for their routine antenatal check-up. At the final stage, two trained female investigators conveniently approached women who were seated in the waiting area of the hospitals with a printed informed consent form. The informed consent form was read out verbatim by the interviewer in either Hindi or Marathi depending upon the language that was used by the woman. Most women who use these health facilities understand Hindi or Marathi. The words and language used in the form were simple and understandable to participants. The consent form included a brief description of the project, purpose of research, expected results and how the findings would help health educators. The specific procedure of how the interview or group discussion would be conducted was explained, and potential time taken for each interview or discussion was mentioned. The participant was told how confidentiality would be maintained. The voluntary nature of participation was clearly explained by telling the participant she was free to withdraw from the research at any time without giving a reason; clear information was provided that the participant had the right to refuse participation (or to ask for cancellation from the study) if she felt uncomfortable, and that this will not affect any other aspect of the patient's careseeking process. The name of a contact person for further questions was also provided. The participants were informed that they would not receive any compensation. After reading the complete form slowly and clearly, the interviewer asked the participant if she had understood the objectives and process; only when the respondent gave verbal consent, the researcher signed the form and proceeded with the interview questions. This procedure was followed in both the focus group discussions and in-depth interviews. Women who agreed to participate were interviewed in a small side-room provided by the hospital authorities. Both the investigators were female and were fluent in English, Hindi and Marathi, and experienced in conducting interviews with female respondents from

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low-income communities in Mumbai. A total of 31 respondents provided inputs for this study. Data collection was conducted in Hindi during maternity hospital timings of 11 am to 3pm. Data collection We conducted open-ended individual or in-depth interviews (IDIs), lasting 45 minutes on average, with 19 respondents and two focus group discussions (FGDs), lasting approximately 90 minutes each with six respondents in each group. Individual interviews were more pragmatic in this study setting because the women had limited time and preferred privacy. However, for purposes of this study where we wanted to seek data completeness and confirmation, we had to request two groups of consenting women to give us some additional time for the focus group discussions. Individual interviews and focus group discussions have been combined for the purpose of data completion and confirmation (Adami, 2005; Halcomb and Andrew, 2005; Lambert and Loiselle, 2008). Individual interviews were used to explore personal experiences and focus group discussions helped examine beliefs about the condition or phenomenon (Molzahn et al., 2005). Thus, each method may provide different views of the same problem and thus create a more comprehensive understanding (Lambert and Loiselle, 2008). The specific interview guide used to explore women's perceptions and practices related to anaemia comprised four sections: (1) Knowledge and awareness of anaemia: including questions about definitions, symptoms and seriousness of anaemia. (2) Causes and consequences of anaemia: including questions about knowledge of iron, its functions and benefits, and consequences of anaemia on the mother and child. (3) Knowledge, beliefs and use of Iron–Folic Acid (IFA) supplements: including questions about frequency of taking these supplements as well as reasons for compliance or noncompliance. (4) Dietary practices to address anaemia: including questions about the nature and frequency of daily dietary intake, consumption of iron-rich foods and Vitamin C-based foods, dietary practices to alleviate anaemia and barriers in adopting healthy food practices. Audio recording of interviews could not be carried out because most participants were uncomfortable with this method. Hence, the use of note-taking as a method of recording data was a pragmatic consideration. In order to compensate for the challenges of notetaking during a conversation, all individual interviews and focus group discussions were facilitated by two investigators. The senior fieldinvestigator played the role of moderator and asked the questions and held the conversation while the junior person assumed the role of assistant moderator taking notes and responses verbatim in Hindi. The assistant was trained to take notes in a manner which indicated clearly if something was a direct quote and if some comment had been paraphrased. Notes were also simultaneously taken by the moderator. This arrangement of a two-member interview team did not affect the interview or make the respondent uncomfortable because the process and the role of the assistant were clearly explained to the participant right at the start. Furthermore, having the same moderator and assistant for every interview assured a higher level of consistency and reliability. Although it is possible that moderator or assistant moderator biases may have influenced the manner in which certain findings were reported, it was addressed by having the two discuss their notes and findings immediately after each interview. The advantage of the note-taking method is that it facilitates speedy analysis. Information is already classified into

appropriate response categories by the interviewer and it is immediately and readily accessible. The interviewer can also ask for clarifications right away. However, this method also has some disadvantages. The writing of notes during a conversation may disrupt the effectiveness of communication between the interviewer and the respondent. Seeing notes being taken may also hinder some respondents from sharing sensitive information and discussing confidential issues. Moreover, if a particular respondent is sharing a lot of information and talking fast, the note-taker may miss out on some details (Gall et al., 1996; Muswazi and Nhamo, 2013). These issues were addressed in the study by having one designated assistant who only took notes while the moderator focused on the interview, and by taking verbal consent of respondents and informing them of the process before starting the interview. Having female moderators of roughly the same age group interviewing the female respondents also helped in this process. At the start of all IDIs and FGDs, the assistant moderator filled out a socio demographic survey form that captured each respondent's age, religion, education level, occupation, number of children, personal monthly income and monthly household income. Ten IDIs were conducted at first and all ideas emerging from them were tested in the following days in the two FGDs to confirm conceptual representativeness of concepts and specify the conditions under which these perceptions existed (Strauss and Corbin, 1990). Data collection ended after conducting the second set of nine IDI's as the investigators reached a point where no new themes emerged and the data did not add to the overall framework of analysis. The last nine IDIs further enriched the conceptualisation and helped identify individual and contextual circumstances around the phenomenon. This sequence added value to the interpretation process and enhanced trustworthiness of the findings (Lambert and Loiselle, 2008).

Data analysis At the end of each IDI and FGD, the two investigators translated their notes into English. The moderator sat in a separate room and wrote additional notes and observations independently. On the same day, the moderator and assistant compared their notes and made one comprehensive document for each IDI and FGD. Two investigators then read and analysed all such interview and discussion documents independent of each other. Steps for a thematic data analysis for all these individual interview documents included the following: (a) becoming wellacquainted with the notes; (b) noting impressions and deriving categories; (c) reviewing and refining categories; (d) developing themes; and (e) reviewing previous steps to derive new themes, commonalities, patterns and differences (Ely et al., 1991). Themes were established both by frequency of occurrence and by importance. Frequency refers either to the number of times it appears in the raw data or by its appearance in the interview notes. Importance refers to themes that may occur once or a few times, but contains a critical idea that is relevant to the topic areas being discussed. Trustworthiness of interpretation was established by investigator triangulation. Analysis notes were checked by the investigators for agreement on content and coding of themes. After 10 IDIs were analysed, the findings were confirmed with the target population using the method of FGDs. After the FGDs helped establish a clearer, contextual picture of the issue and the opinions and beliefs surrounding certain themes, nine remaining IDIs were conducted, and analysed in a similar fashion as mentioned above. They were back-checked with two representatives of the target population to determine the credibility of the themes.

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Tiredness and weakness is a part of pregnancy, just like a woman puts on weight. It does not have any bad effect on the mother or her child. 24 year old mother with one child

Findings Most of the respondents were homemakers with no formal education. Their ages ranged from 18 to 33 years (mean 24.97 years). This was the first pregnancy for 58.1% of the respondents. The mean monthly household income was INR 9967.74 (US$ 183.63 and EUR 141.61) and the median income was INR 10,000 (US$188 and EUR 142.07). Socio-demographic composition of the sample is presented in Table 1.

A pregnant woman has to carry another body within her, this is something new for her body and she may get tired because of this. That is why she experiences giddiness and other symptoms. 20 year old mother with one child

PERCEPTIONS OF ANAEMIA Popular definitions, symptoms, seriousness ‘Lack of blood in the body’ (Shareer mein khoon ki kami) was the description of anaemia used by the respondents (see Table 2). Respondents said they learned this from health care providers who use this term extensively to describe anaemia, especially after the routine antenatal blood test. Only three respondents who had greater than higher secondary school education were aware of the clinical term ‘anaemia’. Respondents mostly described anaemia through its symptoms such as weakness, dizziness, lack of strength, swelling in the feet and white lines on fingernails. Ten respondents had experienced mild to moderate weakness during their pregnancy, and some had experienced giddiness; however, none of them identified this as severe enough to consult a doctor. Respondents stated openly that anaemia should not be taken seriously because weakness and giddiness associated with anaemia is ‘normal during pregnancy’ and an accepted part of being pregnant. The reason was that the woman's body had to share resources with the fetus. Apart from weakness, giddiness and tiredness, other normative experiences during pregnancy included an aversion to certain kinds of foods, loss of appetite, nausea and vomiting:

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Feeling nauseous and having an aversion to certain food smells is natural, this happens during pregnancy, there is no need to be stressed. As the pregnancy progresses one tends to get used to it. 24 year old mother with one child Respondents' perception of anaemia as ‘normal during pregnancy’ was also reinforced by the fact that they had seen almost every known reproductive-age female in their social network – their mothers, sisters, in-laws, neighbours – undergo this experience. Respondents received advice from these older women around them, who said that these experiences were part of Table 2 Terminology and definitions related to anaemia used by the respondents. Language Terms

English translation

Hindi

Lack of blood in the body 22 Weakness 17 Dizziness 11 Lack of strength 5 Swelling in the foot 4 White lines on fingernails 3

Shareer mein khoon ki kami Kamzori OR Kum Shakti Chakkar aana Taakat kam hona Pair mein sujan Naakhun pe safed reshi

Table 1 Socio demographic characteristics of the respondents. Characteristics

n

%

Age in years (mean 24.97; SD 3.24; median 25; min 18, max 33) 18–21 22–30 30þ

4 25 2

12.9 80.7 6.4

Religion Hindu Muslim

20 11

64.5 35.5

Number of children (mean 0.45; SD 0.56; median 0; min 0, max 2) 0 1 2

18 12 1

58.1 38.7 3.2

Educational level (mean 5.84; SD 4.85; median 7; min 0, max 15) No education Below 10th grade Completed 10th grade (SSC) Completed 12th grade (Higher secondary school)/Bachelor's degree

11 8 9 3

35.5 25.9 29.0 9.7

Employment status Employed Unemployed (housewife)

4 27

12.9 87.1

Personal monthly income in Indian Rupees (INR) (mean 838.71; SD 2281.76; median 0; min 0, max 8000) No personal income 27 87.1 Rs. 1500–Rs. 5000 (US$ 28.34–94.48) 2 6.5 4Rs. 5000 (US$ 94.48) 2 6.4 Monthly household income in INR (mean 9967.74; SD 2738.41; median 10,000; min 7000, max 18,000) Rs. 5000–Rs. 10,000 (US$ 94.48–188.96) 24 Rs. 11,000–Rs. 15,000 (US$ 207.86–283.44) 5 4Rs. 15,000 (US$ 283.44) 2

77.5 16.0 6.5

Frequency

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pregnancy as the body goes through changes when carrying a child and they cause no harm to the child or the mother. The rationale against perceiving it as a serious threat or even taking any strong action was that if these other women in their immediate network could endure the condition without any major problem to the child, then why should the respondent worry about it? It was so common in the family and community that it was treated as normal: If our mothers could have a normal and safe delivery despite having this condition, then what is the need to take this seriously? Also our mothers don't force us to seek medical advice; because they don't know much about this condition either. 33 year old woman with one child Respondents stated that symptoms of anaemia can be addressed by taking rest and having certain food items such as a salt and sugar water solution or coconut water: I tend to feel tired even without doing any work. These things usually happen during pregnancy. When I experience such weakness, I leave all work and take rest. After sleeping for onetwo hours, I feel ok. 27 year old mother with two children My mother tells me to drink a solution of salt, sugar and water if I feel giddy. I used to experience light giddiness and weakness but this is common during pregnancy. 23 year old mother with one child However, if the weakness hindered their ability to complete household duties such as cooking, cleaning or taking care of the family, then they would consult a doctor. On further probing, respondents were found to have a clear hierarchy of symptoms and signs during pregnancy that drove them to see a doctor. Only those symptoms perceived to affect the child or fetus were considered extremely serious. On the other hand, symptoms in the mother such as weakness or fatigue were not perceived to be affecting the fetus directly and therefore not considered severe. Thus, according to women, the least serious symptoms were weakness and fatigue; slightly higher in priority were fever and white (genital) discharge; and the most distressing ones were abdominal pain and vaginal bleeding: If we bleed then it could affect the child; it will not get enough blood and this could affect my child's growth. 25 year old mother with one child Bleeding could lead to premature birth or miscarriage. 28 year old mother with one child Stomach pain is a danger sign as the child is growing in my stomach and anything that affects me will affect my child; it could get injured. If anyone suffers from it, then they should go to the doctor immediately. 24 year old mother with one child

able to eat required amount of food, that's why she suffers from ‘khoon ki kami’ (lack of blood). 27 year old mother with one child Another cause reported by some women was some vague ‘deficiency’ in the body. They were unsure and used terms like deficiency of ‘protein’, ‘calcium’ and ‘vitamins’ interchangeably. Only three respondents with education beyond higher secondary school stated iron deficiency as the cause as they had read about it. None of the other women knew about iron, its functions or benefits, even though almost all respondents said they consumed ‘iron supplements’ (‘iron ki goli’ – their terminology for the iron– folate supplements). The consequences of anaemia reported by the respondents were mostly related to the fetus or newborn: low birth weight, weak child, poor intellectual growth and death of the child. Recognition of maternal complications associated with anaemia was low, with only one respondent stating death due to excessive bleeding. The most common consequence of anaemia for a pregnant woman was reduced physical mobility. PRACTICES WITH RESPECT TO ANAEMIA-REDUCTION Iron–Folic Acid (IFA) supplements All respondents were aware that IFA supplements were distributed free of cost at government clinics to pregnant women from the third month of their pregnancy. A majority (25 out of 31) of the women reported that they consumed supplements regularly. Although respondents referred to IFA supplements as ‘iron ki goli’, only three women linked iron deficiency as a cause of anaemia and understood why IFA supplements should be consumed during pregnancy. Other respondents stated that the supplements ‘give strength’, ‘body feels better after taking the supplements’ and ‘helps give birth to a healthy child’. On probing it was found that none of them had asked the doctor about the ingredients of IFA supplements. Respondents attributed regular consumption of IFA supplements to the health providers' persuasion that it would have a positive effect on the physical and mental growth of the child. They also believed that the supplements must be good for the child because ‘doctors know what is best for their patients’: The doctor said that these supplements will help in the development of my child's brain. I want my child to be intelligent. Taking these supplements gives me a feeling that my child will be born healthy. I'm not aware if the medicines will benefit me. 31 year old mother with one child Respondents unanimously stated that having a healthy baby was the end goal of their pregnancy. Respondents clearly saw their role in the family as that of a child-bearer: A healthy baby is my dream. This child is going to be my identity. Taking supplements regularly is the easiest thing that I can do in order to ensure that my child is born healthy. 18 year old woman in her first pregnancy

Causes and consequences Although respondents stated a variety of causes for anaemia, almost none had correct knowledge about the aetiology of anaemia. Respondents attributed it to inadequate quantity and poor quality of diet and that pregnant women had to share their blood with the fetus:

Even though I was disappointed about discontinuing my education, I have accepted the fact that this child is now going to be my project. It is my duty and responsibility to bear a child for the family. My in-laws happiness and showering of attention has made this belief stronger. 18 year old woman in her first pregnancy

During pregnancy, we need to eat additional food as we share our blood with our child. Hence we have to eat more green leafy vegetables that will increase our blood. Sometimes due to loss of appetite and aversion to certain foods, a woman is not

I would want to do some work after the child gets older, in order to support my husband. But my child will be my focus and looking after the child and ensuring that s/he grows up to be healthy and smart – that is my job, just like my husband's

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job is to handle the financial affairs of the house. 22 year old woman in her first pregnancy More than half of the women said they would not take the IFA supplements if it did not have any impact on the child's health: I can always take care of myself later (after pregnancy). I can make changes in my diet, take rest and I will feel better. But my child needs care and nutrition right now. Hence I will only take the medicine if it has a good effect on the growth of my child. 27 year old mother with one child A few respondents referred to the IFA supplements as ‘medicine that increases appetite’ (‘bhookh badhaane ki goli’). The reasoning was that consuming these supplements increased appetite, and subsequently made the women eat more food. This compensated for the ‘lack of blood’ and helped the women regain strength and health. Two women discontinued IFA supplements after experiencing nausea; neither of them consulted the doctor. One of them was advised by her mother-in-law to avoid medicines and take rest, whereas the other woman reported that side effects interfered with her full-time job as a tailor, thus affecting her daily wages. Respondents also said that pregnant women may avoid taking IFA supplements when they are sick, fearing that medicines may have a negative impact on the fetus/newborn. Dietary measures Respondents unanimously said a healthy diet was the most effective remedy for anaemia in pregnant women, whereas medication played a secondary, supporting role. According to the respondents, anaemia could be treated with a nutritious diet that included increased intake of green leafy vegetables such as spinach, fenugreek, dill leaves and radish leaves, and also beetroots and tomatoes. These vegetables ‘gave the woman energy’ and increased their blood. Respondents were unaware of other iron-rich food items: Eating healthy food is more important than medicines as it is a natural way of treating the body. 26 year old woman with one child One cannot rely only on medicines in cases of weakness, fatigue and other problems during pregnancy. There has to be a balance between diet and medication. I suffered a lot during the first few months of my pregnancy. I used to feel weak all the time and even experienced some bleeding. Only after I started bleeding, did my in-laws take me to the doctor. I was told that I have less blood in my body. I started taking medicines but also became very careful about my diet. Apart from green vegetables, I also started eating eggs and mutton soup as these food items give you strength. I feel much better now. 21 year old woman in her first pregnancy Despite awareness of a nutritious diet, the women's own eating habits and daily nutritional intakes were deficient and erratic. Respondents consumed a daily diet of rice or chapatis (Indian bread) and daal (lentils). Most women reported consuming green leafy vegetables such as spinach and fenugreek 2–3 times in a week, and a third reported eating fruits like apples, bananas and sweet limes every other day. One obstacle in implementing dietary change at home was the rising cost of food items and lack of affordability: During pregnancy, one should eat lots of green leafy vegetables and fruits, but with the rising costs of food, it is not possible to eat good food every day. 24 year old woman pregnant with second child

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If I do not have money then how can I eat good (nutritious) food? 28 year old mother with one child However, there were family and cultural barriers too. Vegetables were consumed mostly at lunch, whereas dinner called for preparation of food such as mutton, fish or fried items, as the men demanded these items on returning from work. Women's responses from the interviews and focus groups indicated a general inability to challenge their husband's food preferences. Most women relied on a vegetarian diet, either due to their religious orientation or due to the belief that non-vegetarian food items including eggs, meat and fish were too ‘hot’ (‘heaty’ in their terms) for the body, and would hamper the fetus' growth or lead to miscarriage. They also mentioned that chores and duties associated with care of other family members made it hard to make dietary change or take care of themselves during pregnancy: The responsibilities of a joint family make it difficult to care for yourself. It is different when you are in your mother's house where you can do as you please 26 year old mother with one child I have another child and I have to take care of him, cook food and do other chores. It can get tiring. Sometimes I don't eat on time. This is bad, but I try as much as I can, to pay attention on my health. 27 year old mother with one child

Discussion This qualitative study with pregnant women found that although almost all respondents had experienced symptoms such as dizziness and weakness, which they attributed to anaemia, most were unaware of the clinical term, causes or aetiology of anaemia. Respondents unanimously stated the best solution for the problem of anaemia was a nutritious diet. Despite this knowledge, respondents did not consume appropriate diets, nor could they provide details of exact dietary regimens that would help them improve. The majority did not know that deficiency of iron in their body or diet was the cause of anaemia. This is similar to the findings of a study of anaemia conducted in southern India (Ny et al., 2006) where respondents were unable to link IFA supplements to iron deficiency and referred to these supplements as vitamins or appetite-stimulants. These findings are also consistent with previous studies conducted by Galloway et al. (2002) and Bentley and Parekh (1998) where women recognised symptoms of anaemia but did not know the clinical term for anaemia. Many of them did not know the reason why they were prescribed IFA supplements, and ascribed symptoms of anaemia to a poor quality diet with no mention of iron deficiency as a cause. Owing to religious or cultural beliefs and sometimes financial reasons, the majority of Indian women follow a vegetarian diet, which is low in haeme-iron sources (Indian Council of Medical Research Task Force Study, 1989), thereby reducing their overall iron intake. Adherence to a vegetarian diet coupled with a lack of knowledge about iron-rich foods or alternative ways to increase absorption of food iron by using Vitamin C-rich items in the diet (Gopalan, 1998) make women vulnerable to anaemia and its consequences. Although some respondents said the cost of food items was a factor in choosing everyday diets, many of them mentioned difficulties in changing entrenched dietary habits and eating practices of other family members, especially the husbands, indicating the need to include family members in anaemiareduction interventions.

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Respondents described anaemia as ‘lack of blood’ in the body, but did not seem worried about it because they perceived anaemia and its symptoms as ‘normal during pregnancy’. These findings were similar to the existing literature on women's perceptions and attitudes towards anaemia (Bentley and Parekh, 1998). Our findings highlight that women's perceptions about anaemia have changed little over the decades despite continued government interventions. The perception that ‘anaemia is normal during pregnancy’ was reinforced by the fact that almost every known reproductive-age female in their social network had experienced this condition. In a country where three in five pregnant women suffer from anaemia (IIPS and Macro International, 2007), it is highly likely that the high prevalence only reinforces women's perceptions that anaemia is a part of being pregnant. If pregnant women, and other women around them, perceive anaemia as normal or natural, then what is the likelihood that they will take strong action to address it? This study also found that respondents prioritise the health of the fetus vis-a-vis their own health and engage in positive health practices only if it benefits the fetus or the child. Women were more aware of and concerned about the consequences anaemia had on the fetus or newborn rather than their own bodies. Any desire for remedial action was stimulated by their concern for giving birth to a healthy baby. Women said they took IFA supplements because the health providers told them it would help them bear a healthy child. In the Indian context, a woman is socialised to think right from infancy that she is ‘destined’ for childbearing (Bumiller, 1990; Liamputtong, 2007). Even in this study, women viewed their role primarily as mothers and child-bearers. Their responses on healthy habits during pregnancy only focused on the health and safety of the fetus. On the basis of what our respondents told us, it appears that health providers seem to have understood this intuitively and are taking a pragmatic, socially acceptable route to ensure compliance with IFA – telling pregnant women to consume IFA supplements regularly because it is good for their baby. Limitations The limitations of this study are similar to other qualitative studies such as small sample size and convenient manner of selection of respondents. These interviews have relied on subjective accounts of the respondents, including self-reporting for topics such as compliance with IFA supplements and dietary practices; this may lead to a bias in the findings. The interview team consisted of two members who took notes during the interviews, and despite both staff being young females and respondents being informed of the process, this may have constrained some respondents from speaking freely or interrupted the flow of the conversation. Despite these limitations that make generalisations to larger populations difficult, some interesting and important themes emerged that merit further discussion. These key themes provide useful insights for crafting an effective anaemiareduction health education and communication intervention. Conclusions and implications for behaviour change Nationally representative data clearly indicate that anaemia is a huge burden in India (IIPS and Macro International, 2007; Balarajan et al., 2013). The National Nutrition Anaemia Prophylaxis Programme, operational for more than four decades, continues to rely heavily on iron supplementation, with little focus on nutrition and aetiology-based education (National Institute of Health and Family Welfare, 2012). A review of community-level anaemia interventions showed that only three out of nine shortlisted programmes addressed dietary behaviours, whereas the rest

focused on IFA supplementation (USAID and Vistaar Project, 2008). Obviously, approaches that focus only on IFA are not working. In fact, the practice of iron supplementation in pregnancy to address anaemia was found to be inadequate in the early part of the 1990s (Indian Council of Medical Research Task Force Study, 1992; Steer et al., 1995). However, IFA distribution to pregnant women has persisted because the battle against anaemia has been limited to the clinical sphere in India and to the life-stage of pregnancy. Some experts have gone beyond this model and recommended that in cereal-eating populations such as India, the control of anaemia calls for effective convergence of three major approaches. In addition to iron/folate supplement administration, two more factors help: inclusion of Vitamin C-rich food items in diet, which increase absorption of food iron, and fortification of appropriate food items with iron (Gopalan, 1998). Some authors have pushed for improvements in the diet and iron supplementation in adolescence (Brabin et al., 1998). The two approaches mentioned above fall into two broad categories: one approach (Gopalan, 1998) asks us to extend anaemia-reduction interventions beyond the clinic and into the household and community. The second one (Brabin et al., 1998) suggests that we use a lifecycle approach towards anaemiareduction and start early. Of course, at the individual level, there is an urgent need for trained health workers who provide holistic counselling, planned individual and family-level education about the seriousness of anaemia in women, its links with iron in the diet, available medical treatments and changes in dietary and eating habits in households. The efficacy of education and communication interventions that incorporate women's cultural beliefs and perceptions regarding anaemia has been highlighted by studies conducted in south India (Ny et al., 2006; Noronha et al., 2013). However, the findings from this study show that women hold strong beliefs that ‘anaemia is normal in pregnancy’ and ‘the baby is my primary concern, not my own health’. This discourages us from assuming that mere nutrition education or providing IFA supplements early in the lifecycle will help reduce this prevalence. Anaemia does not just stand at the intersection of health and nutrition; it also stands at the intersection of culture and gender. From a socio-cultural point of view, we are not just dealing with women's knowledge gaps about anaemia and nutrition, but also the low status of women in the Indian household. We have to address those socio-cultural injuries and injustices that start at birth of the girl-child and continue to influence women's treatment right up to their old age. Anaemia is almost symbolic of deeply entrenched gender inequalities in India that manifest on the plate of food served to girls and women. Interventions have to change women's perceptions about the seriousness of anaemia by addressing larger sociocultural norms about gender and the value of women not just as child-bearers but as humans with rights. A rights-based approach to women's health that starts at the birth of a girl-child and tells her that it is her right to have ‘normal’ health and ‘No, anaemia is not normal for you’ is required as a long-term anaemia-reduction intervention. Future programmes have to not only educate woman about the health aspects of anaemia but also (re)define ‘normal’ as her right to enjoy all benefits that other privileged members of her family and society enjoy, especially the right to eat healthy. An approach to anaemia that frames the problem as one arising from unequal treatment of women within Indian households and communities, and the internalisation of that inequality by the women themselves, rather than as a problem of pregnancy to be solved in a clinic, will be more effective, efficient and equitable in the long-term. Anaemia-reduction programmes could and should become vehicles for women's empowerment.

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