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Strategies to address anaemia among pregnant and lactating women in India: a formative research study

Published online by Cambridge University Press:  24 February 2020

Pamela A Williams
Affiliation:
RTI International, Social Policy, Health and Economics Research Unit, 3040 E. Cornwallis Road, PO Box 12194, Research Triangle Park, NC27709-2194, USA
Jon Poehlman*
Affiliation:
RTI International, Social Policy, Health and Economics Research Unit, 3040 E. Cornwallis Road, PO Box 12194, Research Triangle Park, NC27709-2194, USA
Katelin Moran
Affiliation:
RTI International, Social Policy, Health and Economics Research Unit, 3040 E. Cornwallis Road, PO Box 12194, Research Triangle Park, NC27709-2194, USA
Mariam Siddiqui
Affiliation:
RTI International India, 6th Floor, Commercial Tower of Novotel-Pullman Hotel, Aerocity Hospitality District, IGI Airport 110037, New Delhi, India
Ishu Kataria
Affiliation:
RTI International India, 6th Floor, Commercial Tower of Novotel-Pullman Hotel, Aerocity Hospitality District, IGI Airport 110037, New Delhi, India
Anna Merlyn Rego
Affiliation:
Centre for Social and Behaviour Change, Ashoka University, Rajiv Gandhi Education City, Sonipat, Haryana131029, India
Purnima Mehrotra
Affiliation:
Centre for Social and Behaviour Change, Ashoka University, Rajiv Gandhi Education City, Sonipat, Haryana131029, India
Neela Saldanha
Affiliation:
Centre for Social and Behaviour Change, Ashoka University, Rajiv Gandhi Education City, Sonipat, Haryana131029, India
*
*Corresponding author: Email jpoehlman@rti.org
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Abstract

Objective:

Over half of pregnant women in India are affected by anaemia, which can lead to premature birth, low birth weight and maternal and child mortality. Using formative research, we aimed to understand social and cultural factors around iron and folic acid (IFA) supplement provision and adherence to identify potential strategies for improving adherence and behaviours to prevent and treat anaemia among pregnant and lactating Indian women.

Design:

In-depth interviews and focus group discussions with women and key informant interviews with health officials and workers.

Setting:

Four districts in two Indian states: Allahabad and Bara Banki districts in Uttar Pradesh and Chikkballapura and Mandya districts in Karnataka.

Participants:

Pregnant and lactating women (n 65) and district officials and community health workers (n 14).

Results:

Most women were aware of anaemia but did not understand its seriousness and consequences. All women received IFA supplements (predominantly for free), but many were not adherent because of side effects; lack of information from healthcare providers on the causes of anaemia, its seriousness and solutions and low social support. To address anaemia, women were most confident in their ability to prepare and eat healthier foods but lacked control over resources such as appropriate food availability.

Conclusions:

Based on the findings, we recommend multicomponent interventions to train healthcare providers, address systemic barriers and involve family members to support IFA supplement adherence and dietary changes. Future research will determine which strategies are most effective to reduce the burden of anaemia in India among pregnant and lactating women.

Type
Research paper
Copyright
© The Authors 2020

Over half of women in India are affected by anaemia – including 50 % of pregnant women and 58 % of lactating women – and its prevalence continues to increase(1), caused predominantly by iron deficiency(Reference Menon, Ferguson and Thomson2). The high prevalence of iron-deficient anaemia in India is attributed to the low bioavailability of iron in traditional Indian diets(Reference Kaur3,Reference Mehta, Platt and Sun4) . Another factor contributing to high rates of anaemia is that women need more iron than normal during the first trimester of pregnancy and while nursing(Reference Stuart-Macadam5).

Anaemia may cause fatigue, shortness of breath, dizziness, headaches and heart arrhythmia. During pregnancy, its consequences are pronounced, leading to premature births, low birth weight and maternal, perinatal and infant mortality(Reference Rawat, Rawat and Mathur6). In South Asia, 80 % of maternal deaths attributable to anaemia take place in India(Reference Gupta, Diwedi and Singh7). Consequently, finding solutions to anaemia is a national imperative.

The government of India has adopted the use of iron and folic acid (IFA) supplements during pregnancy as one of its primary prevention and treatment tools, mandating that all pregnant women receive 100 d of IFA supplements during pregnancy(Reference Diamond-Smith, Gupta and Kaur8). However, even though evidence shows that IFA supplementation reduces anaemia(Reference Rai, Fawzi and Barik9), adherence among Indian women is poor(1). Based on qualitative research conducted in India and other developing countries, poor adherence can be attributed to supplement side effects; low literacy; unclear instructions that may result in improper dosage(Reference Kwon, Ramasamy and Morgan10); constipation, gastritis and vomiting among pregnant and lactating women; forgetfulness and misunderstanding the need to continue taking supplements throughout pregnancy(Reference Mithra, Unnikrishnan and Rekha11Reference Galloway and McGuire13). Other low-adherence factors include lack of awareness of anaemia symptoms and not understanding the consequences or the benefits of prevention, low agency within one’s household, beliefs about pill consumption during pregnancy, poor utilisation of time-appropriate antenatal services and insufficient counselling by healthcare providers(Reference Sedlander, Rimal and Talegawkar14,Reference Noronha, Bhaduri and Bhat15) .

Only limited comprehensive research has addressed the challenge of poor adherence to IFA supplement regimens, and little research has examined the efficacy of interventions to reduce anaemia and ways to improve IFA supplement adherence during pregnancy and breast-feeding in India. Consequently, research is needed to (i) better understand beliefs, attitudes, barriers and practices related to IFA provision and adherence to identify potential strategies for improving adherence and (ii) to identify other behaviours and strategies with the potential to address the anaemia burden. To help design or improve behaviour change and communication interventions for this target audience, the current study aimed to better understand the social and cultural factors that affect prevention and treatment of anaemia amongst pregnant and lactating women in India.

Methods

Sample

To have both northern and southern regions of India represented, we conducted our study in the states of Uttar Pradesh (UP) in the north and Karnataka (KA) in the south. In the UP, anaemia amongst pregnant women aged 15–49 years is 51·0 %, close to the national average of 50·4 %; whereas anaemia amongst pregnant women in KA in the same age group is 45·5 %(1). We then selected two districts within each state located near one another (because of cost and convenience considerations), whereby one district in the pair had a higher anaemia prevalence (i.e. 55·5 % in Allahabad, UP; 53·9 % in Chikkballapura, KA) and rate of adherence to IFA tablets for 100 d or more amongst pregnant women (i.e. 24·6 % in Allahabad, UP; 47·1 % in Chikkballapura, KA), and the other district had a comparably lower anaemia prevalence (i.e. 38·2 % in Bara Banki, UP; 46·2 % in Mandya, KA) and rate of adherence to IFA tablets for 100 d or more among pregnant women (i.e. 9·9 % in Bara Banki, UP; 18·9 % in Mandya, KA)(1619).

We also recruited a convenience sample of pregnant and lactating women for in-depth interviews (IDIs) and focus group discussions (FGDs). We identified potentially eligible participants with assistance from district-level program officers and frontline health workers. At the time of IDIs and FGDs, we collected sociodemographic information and rescreened all women to confirm they were 18 years of age or older, living in the district where they were interviewed, currently pregnant or breast-feeding, identified as having been diagnosed with anaemia by a healthcare worker and reported receiving IFA supplements as part of anaemia treatment. Our final sample comprised 65 women, including 31 from UP (16 women from Allahabad, 15 from Bara Banki) and 34 women from KA (16 from Chikkballapura, 18 from Mandya) with whom we conducted IDIs and FGDs. For the key informant (KI) interviews, we recruited a variety of district-level health officials (n 9) and frontline health coordinators and workers (n 5) from each of the four districts.

Procedures

The IDIs allowed us to explore individuals’ perspectives in the context of their own experiences, whereas the FGDs enabled us to explore topics broadly and to capitalise on the interaction between participants for generating ideas. Prior to collecting data, interviewers participated in a 2-d training on the research objectives, procedures, interview instruments and interviewing techniques. No incentives were provided to participants other than a light snack in the FGDs. The data were collected between November 2017 and February 2018.

In-depth interviews

We conducted a total of 28 IDIs with pregnant and lactating women, including 16 IDIs in UP and 12 IDIs in KA. We developed a semistructured discussion guide with flexibility to pursue emergent issues, such as participants’ experiences with anaemia during pregnancy and lactation and their food selection and preparation practices. Sample questions asked during the IDIs and other data collection activities are shown in Table 1.

Table 1 Sample of questions from in-depth interviews, focus group discussions and key informant interview guides

* Question asked during key informant interviews.

We also included a card sorting activity with the IDIs to assess perceptions of the difficulty of a set of specific behaviours related to anaemia prevention and treatment. Participants were shown a set of 4–7 cards, with each card featuring a behaviour that could be used or leveraged to improve nutrition, increase adherence with supplements or provide greater family or social support. After reviewing each card in a category, participants were asked to sort them based on how hard or easy it would be to perform each behaviour. The use of cards as a projective technique in interviews helps to overcome self-censoring of responses and facilitates conversations on issues that might not easily be broached through direct questioning(Reference Gordon and Langmaid20,Reference Oppenheim21) . This approach also has been shown to be robust enough to work with low-literacy audiences(Reference Poehlman22).

Focus group discussions

We conducted a total of eight FGDs with pregnant and lactating women, including four FGDs each in UP and KA. Moderators first engaged participants in an activity to explore anaemia prevention and treatment behaviours and their challenges. Using a poster to facilitate this activity, we asked participants to brainstorm a name and other characteristics for a fictional persona of a woman with anaemia. We then asked participants to comment on what the woman should do to take care of her health and address her anaemia and what they thought the woman would do. During the activity, moderators used large post-it type notes on a poster to record and share group comments and elicit additional feedback from other participants on the information shared. Then participants completed the same behavioural exploration card sorting activity as done in the IDIs, with participants working together as a group to classify each card’s behaviour as easy or difficult.

Key informant interviews

We conducted a total of fourteen KI interviews: seven each from UP and KA. We asked KIs a series of questions about the anaemia situation in their district; their experience with anaemia prevention and control programmes, including the sustainability of programmes, the role of health systems and a multisectoral approach to addressing anaemia and the significance of effective communication for anaemia prevention.

Analysis

Audio recordings from IDIs and FGDs conducted in Hindi in UP and in Kannada in KA were transcribed and translated into English. We stored both the study’s qualitative and quantitative data in Excel tables. To analyse the qualitative data, in Excel, we created a matrix of questions (columns) by participant/group (rows) and recorded the participant’s responses in the corresponding cell(Reference Miles and Huberman23). This facilitated review and comparison of responses to individual questions and allowed for sorting by type of participant. We used the statistical software package IBM SPSS Statistics (IBM, Version 25.0) to conduct the statistical analysis.

In reviewing responses to individual questions, we used a constant comparative method(Reference Glaser and Strauss24) to look for emerging concepts or themes in the responses and to refine those concepts as we encountered outliers or differing views. This approach allowed us flexibility to generate ideas or theories about the data, while constantly testing them on new cases. We also noted substantive quotes as examples of common ideas shared in the responses. We synthesised key findings across the three data sources (IDIs, FGDs and KIs) to develop recommendations to prevent and treat anaemia. We used descriptive statistics to summarise participant characteristics.

Results

Consistent with our recruitment strategy, a little more than half of IDI and FGD participants were pregnant (57 %), and nearly half of participants were breast-feeding (46 %), with all participants having received some form of treatment for anaemia. Among the IDI participants, most (67 %) had received some formal education. Most women reported that a healthcare provider had shared with them that they had low iron or anaemia (97 %), had received IFA supplements (91 %) and were receiving care from public-sector health facilities (83 %), as shown in Table 2.

Table 2 Characteristics of participants as reported in in-depth interviews and focus group discussions

* Information provided only by women who participated in in-depth interviews (n 28).

To present our formative findings, we use social ecological models of health to organise the prevailing and actionable themes. These models recognise that individuals’ behaviour and health are influenced by their interpersonal relationships and their surrounding environment and systems(Reference McLeroy, Bibeau and Steckler25Reference Stokols, Allen and Bellingham27). They describe multiple levels of influence on which to intervene to change behaviour, such as individual, interpersonal and organisational factors(Reference McLeroy, Bibeau and Steckler25). Key influencers on health exist within each of these levels of influence. We present our results according to the key levels of influence and the corresponding key influencers for pregnant and lactating women diagnosed with anaemia, as shown in Fig. 1. We also separately present key insights from the card sorting activity that explored prevention behaviours, as shown in Table 3.

Fig. 1 Socioecological model adapted for our study.

Table 3 Quotations from participants during the behaviour exploration card-sorting activity that exemplify barriers and potential communication and behaviour change interventions to address anaemia

UP, Uttar Pradesh; FGD, focus group discussion; KA, Karnataka.

Individual level

At the individual level, we report women’s awareness, knowledge and attitudes about anaemia and their common experiences around their diagnosis and treatment. Most interview participants were aware of anaemia before their most recent diagnosis. Almost half of the IDI participants reported having experienced anaemia during previous pregnancies. Similarly, many participants knew that anaemia could potentially affect them during pregnancy, having heard about it from other women, elders in the community or relatives.

‘Women talk about it very often…women do not take good care of themselves. Few women can eat well, so it is very common.’ – Pregnant woman, UP

A few participants recounted seeing anaemia’s more visible effects on other women, such as yellow or pale skin.

‘Yes, I knew someone [a neighbour] who had anaemia. The child is not born yet. Her skin is pale, so they are assuming that she has blood deficiency. Maybe she will have to be operated on [caesarean section].’ – Lactating woman, UP

The participants’ common description for anaemia was loss or reduction of blood in the body during pregnancy, which they also associated with potential complications such as the need for a blood transfusion or a caesarean section. Many said anaemia resulted from not eating well, citing a lack of vegetables and fruits in one’s diet. Conversely, milk and heat-prone foods were thought to cause anaemia.

‘Eating heat[-prone] food reduces the blood. Working in [the] garment [industry] and peddling machines produces heat [in the body]. Eating brinjal (green chili) creates heat, which reduces blood.’ – Pregnant woman, KA

Participants said the most important thing an anaemic pregnant or lactating woman could do was to ‘eat well.’ Foods thought to provide iron include green vegetables, beet root, pomegranate, spinach, carrot, jaggery and sprouted pulses. However, the cost of foods was a challenge to healthy eating. Other barriers to changing one’s diet and eating meals are shown in Table 3.

Among the IDI participants, most reported being informed – usually by a doctor in a hospital setting – of their anaemia during their prenatal checkup, based on Hb testing. Most were diagnosed around the fifth month of pregnancy, although timing of diagnosis ranged from the second to the ninth month. Most participants also reported not experiencing symptoms prior to their diagnosis, although a few experienced shortness of breath, fatigue, tiredness, fainting, dizziness, headache and body pain, which prompted them to seek a diagnosis.

When asked what they were feeling when they learned of their anaemia, participants’ responses were mixed. About half said it made them worried or anxious, with concerns focused on the well-being of their unborn baby and having a difficult delivery.

‘I was worried. Anyone could take the pain [of a difficult delivery], but nothing should happen to the baby. I cannot say exactly, but if the mother has low blood, how can the blood be there in the child? So, delivery will always be a problem. Like a person eats and lives, the child will eat through blood and survive.’ – Pregnant woman, UP

The roughly half of participants not concerned about their anaemia said that they knew it was possible during pregnancy or had experienced a prior diagnosis of anaemia during pregnancy.

All IDI participants reported being offered IFA supplements after receiving a diagnosis of anaemia, with most also receiving instructions on how to take the supplements. However, instructions varied in the number of times a day to take them and how to take them.

All participants said that they started taking the supplements. Several shared that they did not like taking the supplements because of the bad taste or associated side effects of nausea, vomiting, dizziness and headaches, which led some participants to stop taking them. Out of sixteen IDI participants who commented on their use of IFA supplements, eight reported completing an uninterrupted course, whereas five reported skipping doses or quitting. Another three participants reported quitting after their delivery, thus not taking them during lactation. Participants who were lactating who quit taking supplements reported being less motivated to continue use after delivery, financial constraints and having to travel too far to get them. In the FGDs, when asked about potential challenges to treating anaemia, participants suggested that women sometimes forget to take their supplements because of household chores, such as caring for other children.

A few participants reported their healthcare provider prescribed an iron tonic, after they had complained about the taste or the side effects of the supplements, although they provided little information on the source or makeup of the tonic. Other participants were prescribed iron injections or iron powder. In KA, blood transfusions appeared to be more commonly recommended, although the cost of this treatment was identified as a barrier to completing the recommended full course of transfusions.

KIs, such as district level officials and community health workers, reported women’s lack of awareness about anaemia as the major reason for the extent of the problem. They said pregnant women in their districts were not aware of the seriousness and consequences of anaemia. One KI reported that women only get sensitised about anaemia when they start having complications, which is when they visit an auxiliary nurse midwife (ANM); an accredited social health activist (ASHA), or community health worker; or a doctor. One KI added that ASHAs are not fully knowledgeable about anaemia and contribute to the problem by providing inadequate and incomplete information to women in their village.

Interpersonal level

Family, community members and healthcare workers are important influencers on women’s experience with anaemia because these interpersonal relationships shape anaemia treatment practices. Other related barriers to receiving healthcare and taking supplements are shown in Table 3.

To understand women’s domestic life during pregnancy, we asked participants about their daily tasks and routines and the support they receive from others during pregnancy. Nearly all participants reported receiving support from family members that made their pregnancies or care for their new child easier. Husbands were most often described as providing help with outside work like making purchases at the market and taking the woman to the hospital.

‘My husband helped with all the household chores, fetching water at home, cleaning dishes, washing clothes, with everything [during pregnancy]!’ – Lactating woman, KA

Although many participants reported their husbands were supportive during pregnancy, other women in the household more often provided support for prenatal care and anaemia treatment. Elder female family members, such as mothers and mothers-in-law, were described as trusted resources for information on pregnancy and breast-feeding. A few participants, primarily from KA, mentioned family members advising them not to take IFA supplements, typically out of concern that the supplements would cause the foetus to grow too large and complicate delivery.

‘Until the fifth month of pregnancy, I took the [IFA] tablets. Then my mother told me not to take them anymore. For 15 d, I have not taken the tablets. My mother told me the baby will grow too big and that taking too many tablets is not good for pregnant women.’ – Pregnant woman, KA

Although family was viewed as playing an important role in the physical and mental health of women during pregnancy, healthcare providers (particularly doctors) were often seen as the authorities on care and treatment during pregnancy and anaemia. Nonetheless, often the information participants reported receiving was limited. Participants were simply told they had ‘less blood’ and that they needed to eat well and take all their IFA supplements. Little information was shared about the causes and prevention of anaemia.

‘The doctor advised me to eat well as there is less blood in me. Due to having less blood, there is going to be a problem with the delivery. He [the doctor] told me my blood has to be more than 11.’ – Pregnant woman, KA

When asked about the advice they received about the diet for addressing anaemia, participants’ most common response was that healthcare providers said to eat more fruits and vegetables ‘to increase the blood [haemoglobin level] and keep the baby healthy.’

‘The ASHA…told me my blood [haemoglobin level] is 10. The doctor told me to eat green leafy vegetables.’ – Pregnant woman, UP

KIs also reported that women do not pay attention to what they are eating, especially to the nutritional content of their diets, eventually leading to anaemia. One KI stated that vegetarianism contributes to anaemia, as vegetarian foods are poor sources of iron and protein. Overall, KIs rarely mentioned household dynamics that might impact healthy eating or the availability of nutritional resources.

District-level KIs from UP and KA described tracking pregnant women at the district level and providing IFA supplements (depending on their Hb level) as the standard of care. Women are screened for pregnancy confirmation when they visit the ANM, and if affirmative their Hb levels are checked. Once women are registered in the tracking system, they are monitored by ASHAs who visit them regularly, providing them with supplements during pregnancy and postpartum and counselling them about locally available, iron-rich foods to eat.

Organisational level

In general, participants reported getting IFA supplements free of cost from the hospital. Some of the KA participants – primarily women receiving their prenatal care from private hospitals – reported buying IFA supplements from a store. Most of the UP participants mentioned that ASHA workers visited their homes to provide the IFA supplements, whereas only some KA participants mentioned this. The KIs in UP reported receiving support from India’s National Iron Plus Initiative (NIPI), an umbrella programme for anaemia reduction that provides children, adolescents, pregnant and lactating women and women of reproductive age with iron supplementation prophylactically. In contrast, the KIs in KA did not specifically identify a programme to address anaemia but mentioned ongoing programmes – such as Pradhan Mantri Surakshit Matritva Abhiyan (PMSMA) (28) and Matru Poorna Yojana(29) – that are focused on the well-being of pregnant and lactating women, including anaemia.

KIs identified challenges for programme implementation related to both supply and demand. KIs in both KA and UP reported that beneficiaries’ lack of interest, low awareness and knowledge of anaemia, illiteracy, poor uptake of IFA supplements and little family support were major programmatic challenges. Although KIs also reported that there are sufficient supplies of IFA supplements and access to services is improving at district health facilities, they also reported potential insufficient staffing at primary health centres. Other barriers reported by participants related to communicating about anaemia with healthcare providers are shown in Table 3.

Discussion

The current study used formative research methods to improve understanding of the social and cultural factors – such as beliefs, attitudes, barriers and practices – that affect prevention and treatment of anaemia amongst pregnant and lactating women in India. We aimed to gather information to inform the design of behaviour change and communication interventions to address anaemia through increased IFA supplement adherence. Formative research is helpful for designing behavioural interventions because it describes relevant contextual information and current behaviours and beliefs that can influence intervention success(Reference McLeroy, Bibeau and Steckler25). This research was driven by the high prevalence and substantial burden of anaemia among pregnant and lactating women in India, coupled with the paucity of research with this population on behavioural interventions to combat anaemia and strategies to increase IFA supplement adherence. Our findings contribute to recommendations for future interventions and research.

Pregnant and lactating women

Although the women in our study and in other qualitative research studies conducted in India generally seem to be aware that anaemia is a common issue during pregnancy(Reference Galloway, Dusch and Elder12,Reference Chatterjee and Fernandes30) , our study revealed that pregnant and lactating women are not being provided with the information necessary to make informed decisions or to motivate them to make behavioural changes to address anaemia. Healthcare providers commonly advise women to ‘eat well and take your IFA tablets’ but do not explain the seriousness of anaemia, what they can expect from changing their diet and taking IFA supplements and the benefits of making these changes on their health and quality of life. Also, there is limited focus on anaemia during the breast-feeding period. Because anaemia is often diagnosed during pregnancy, it seems to be handled as a pregnancy-related issue. Consequently, women often stop taking IFA supplements after giving birth.

Our study also explored several behaviours that women could adopt or leverage to prevent and treat anaemia, such as IFA supplement adherence and dietary change. Amongst these behaviours, women seemed most confident in their ability to prepare and eat healthier foods, yet many of the resources related to food were not under their control, such as shopping for foods. Also, interventions aimed at improving women’s diets will need to address making iron-rich foods available within the household.

Target audiences’ values are important for motivating behavioural change. Women in our study consistently reported their desire for their children to be educated so they can have a better future. This insight could be incorporated as a motivating message in behaviour change interventions, providing a reason for women to stay healthy by eating iron-rich foods and taking IFA supplements, which may lead to healthy brain development and longer-term educational success for their child(Reference Black, Allen and Bhutta31,Reference Walker, Wachs and Gardner32) . The content and delivery of such messages could be tested and refined through audience research.

Family

Our study showed that, in general, husbands support their wives by encouraging them to eat well and engage in other behaviours to support a healthy pregnancy and by helping with household tasks. Yet, husbands did not seem to be engaged in their spouses’ anaemia treatment or health decisions. Further, IFA supplement adherence may be undermined by household members, specifically elder family members, who convey discouraging sentiments about IFA supplementation and share erroneous information. Consequently, interventions may need to address intergenerational issues and counter myths and misconceptions about anaemia treatment, such as that IFA supplements increase baby size and complicate delivery(Reference Nisar, Alam and Aurangzeb33).

Based on the results of the current study and prior research in India(Reference Diamond-Smith, Gupta and Kaur8,Reference Chatterjee and Choudhury34) , future research is needed on strategies for incorporating husbands, mothers-in-law and sisters-in-law as advocates for anaemia prevention and treatment adherence, such as during healthcare visits to the ASHA or doctor. One consideration is to give husbands specific roles or activities for supporting their wives. Research has shown the benefit of enlisting social support from spouses to assist partners in making dietary changes to lower their cholesterol(Reference Martire, Lustig and Schulz35,Reference Voils, Yancy and Kovac36) and lose weight(Reference Golan, Schwarzfuchs and Stampfer37,Reference Matsuo, Kim and Murotake38) . In these studies, spousal involvement was typically defined as attending meetings or medical appointments and/or supporting a spouse who was a patient with a disease or risk factor that called for dietary change(Reference Sher, Bellg and Braun39), similar to anaemia. It might be advantageous to incorporate anaemia into a general discussion of family roles related to maternal health, coupled with messages that resonate with family goals and motivators, such as a healthy mom/wife/daughter-in-law/sister means a healthy family and healthy future.

Healthcare providers

Our findings suggest that healthcare provider training – for example, for doctors and ASHAS – is needed to improve communication with women about anaemia. This is consistent with a review of barriers and enablers for improved coverage and utilisation of IFA supplements by pregnant women in Africa and Asia, which concluded that investment and effort in training for healthcare providers were urgently needed to improve women’s adherence to IFA supplements and impact behaviour change(Reference Siekmans, Roche and Kung’u40) and with the findings from a qualitative research study conducted in India and other developing nations(Reference Galloway, Dusch and Elder12). Providers need to inform women of: (i) their Hb level during pregnancy and breast-feeding, (ii) the consequences of anaemia for themselves and their child during pregnancy and as the child develops after birth and (iii) the effects of IFA supplements, including their side effects and how they relate to other bodily experiences during pregnancy; for example, constipation is a side effect, but also may be caused by pregnancy, and mitigation strategies for side effects.

For most women, dietary change during pregnancy will not be adequate to treat their anaemia(Reference Bhutta, Ahmed and Black41Reference Chakrabarti, George and Majumder43). Studies show that women and healthcare providers believe that eating an iron-rich nutritious diet is the best way to prevent and treat anaemia(Reference Fayed, de Camargo and Elahi44,45) . In our study, some providers falsely equated women’s improved diets during pregnancy with the benefits of IFA supplementation in their explanations of treatment, which reflects another critical topic for provider education.

Health system

A minority of women chose to obtain IFA supplements outside of the Indian government distribution system and appeared to do so out of choice rather than necessity. In general, women reported few challenges in getting IFA supplements during pregnancy. However, in their current form, IFA supplements produce side effects that hinder adherence. Consistent with other research(Reference Kwon, Ramasamy and Morgan10,Reference Mithra, Unnikrishnan and Rekha11,Reference Ramakrishnan, Lowe and Vir46) , our study underscored the challenges of promoting a treatment that can have multiple side effects for women who are already going through a period of intense biological changes during pregnancy.

Strategies to address the challenges of IFA supplement adherence remain elusive, other than recognising and legitimising the discomfort of its side effects and the challenges associated with adherence to any regular medication or supplement. However, promising interventions are emerging in other low- and middle-income countries to improve adherence. For instance, involving family members, especially husbands and mothers-in-law, to support IFA supplementation has been shown to significantly improve women’s adherence(Reference Nguyen, Frongillo and Sanghvi47,Reference Wiradnyani, Khusun and Achadi48) . Additionally, improving women’s understanding of the impact of anaemia on birth outcomes and the benefits of IFA supplementation shows some improvement in adherence(Reference Wiradnyani, Khusun and Achadi48,Reference Taye, Abeje and Mekonen49) . A campaign being conducted in Bihar, India, uses visual reinforcement – blood-drop-shaped stickers to be pasted into a booklet with an outline of a baby – to show that each IFA tablet helps to create a complete, healthy baby(Reference Makhijani50). Another formative research study conducted in Odisha, India, is examining barriers and facilitators to IFA use and adherence using the theory of normative social behaviour to contribute to the development of a large-scale intervention at the individual, interpersonal and community levels to improve uptake of IFA supplements and reduce anaemia among women of reproductive age(Reference Sedlander, Rimal and Talegawkar14). These strategies are promising, although they need to be tested to determine efficacy.

Anaemia has a complex aetiology, including a multitude of social and institutional factors associated with anaemia amongst pregnant and lactating women in India. This current study focused mainly on IFA adherence, one aspect of a multifaceted solution to address India’s high anaemia prevalence supported by the government of India and explored how it could be addressed with behaviour change and communication interventions. Other approaches include food-based strategies, such as dietary diversification and iron fortification of foods, and improvements to health services(51). Additionally, control of malaria and other parasitic infections, especially in endemic areas, is recommended as part of anaemia prevention(Reference Stoltzfus and Dreyfuss52). Other key challenges include poverty, lack of access to diversified diets, inadequate healthcare services and sanitation and inadequate health promotion(Reference Anand, Rahi and Sharma53). One study found that improvements in women’s education, household socioeconomic status and sanitation, along with a higher body mass index, greater intake of meat and fish and having fewer young children were key factors for improving anaemia in India.(Reference Nguyen, Scott and Avula42). Given that reductions in anaemia have been associated with delayed age at pregnancy, reduced open defecation and increased levels of iron, folic acid and phytate, multifaceted interventions should address family planning, sanitation and other nutrient deficiencies in addition to IFA supplementation(Reference Chakrabarti, George and Majumder43).

Limitations

One limitation of our study is its reliance on self-reported data, which inherently has the potential to be influenced by social desirability bias. Also, because we used a nonprobability-based sample of participants from two states in India rather than a probability-based sample drawn from the entire country, the study results are not generalisable to the larger population of pregnancy and lactating women in India. These limitations are present in qualitative research studies and do not lessen the contributions of this formative data to inform future research and interventions.

Conclusion

The findings from this formative research can be used to develop intervention strategies that the government of India and others can use that match the needs of pregnant and lactating women in India, their families, and their healthcare providers and systems to address the anaemia burden. We recommend healthcare provider training, incorporating husbands and other family members as advocates for encouraging IFA supplement adherence, and strengthening health systems to increase responsiveness as key strategies. Additionally, future anaemia prevention and treatment interventions targeted at pregnant and lactating women in India need to address cultural beliefs related to IFA supplement side effects and facilitators and barriers such as women’s lack of control over food purchases and women’s inherent motivation to secure the best future for their children, while also involving key influencers such as husbands, other family members and healthcare providers. The complex nature of anaemia underscores the need for multicomponent interventions.

Acknowledgements

Acknowledgements: The authors wish to thank John Baron of RTI International and Aditi Roy, Animesh Rai, Sapna Tiwari and Tara Bhatt of RTI International India for their research assistance and Purnima Mehrotra of Ashoka University for her insightful comments on the manuscript. Financial support: This work was supported by the Bill and Melinda Gates Foundation (Grant # OPP1163104). The Foundation had no role in the design, analysis or writing of this article. Conflict of interest: None. Authorship: N.S., J.P. and A.R. formulated the research questions and designed the research. J.P., M.S., I.K. and K.M. contributed to the development of the data collection instruments, enrolled participants and conducted the study. K.M., M.S. and I.K. analysed the data. P.W., J.P., N.S., K.M., P.M. and A.R. wrote the first draft of the manuscript. All authors contributed to the interpretation of the data, edited the manuscript and approved its final contents. J.P. has primary responsibility for the final content of the manuscript. Ethics of human subject participation: The current study was conducted according to the guidelines laid down in the Declaration of Helsinki, and all procedures involving human subjects were approved by the RTI International and Ashoka University Institutional Research Boards. Verbal consent was obtained from key informants, and written consent was obtained from all other participants.

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Figure 0

Table 1 Sample of questions from in-depth interviews, focus group discussions and key informant interview guides

Figure 1

Table 2 Characteristics of participants as reported in in-depth interviews and focus group discussions

Figure 2

Fig. 1 Socioecological model adapted for our study.

Figure 3

Table 3 Quotations from participants during the behaviour exploration card-sorting activity that exemplify barriers and potential communication and behaviour change interventions to address anaemia