Following an overview of interviewee characteristics and overall treatment-seeking patterns, we bring together our findings on gender-related influences at health-system/service and household/community levels in turn. As we will show, these gender influences are inter-related and had important implications for post-discharge adherence to advice and treatment-seeking behaviour.
Interviewee characteristics and overall treatment-seeking patterns
The main characteristics of the 22 families involved in this study are summarized in Table 3. Of the 10 urban children, 5 were SWK, 3 were MW, and 2 were NWAcross both sites, children were admitted into hospital and enrolled into the CHAIN cohort aged 3 to 17 months, with all reported by parents as having been sick on and off since birth. Eight of the 10 children had experienced a disruption in the family within the last two months from the time of enrolment in this study including recent migration, separation or income earning loss among parents, maternal illness or a change of caregiver.
Of the 12 rural children involved, 5 were SWK, 4 were MW, and 3 NW, with 8 having experienced a family disruption. Nineteen of the twenty-two children were reported by family members to have fully recovered by the time we completed our interviews and three children had died.
In an earlier publication, we described treatment-seeking pathways for the undernourished children in the CHAIN cohort, and key influences on treatment-seeking actions and recovery [48]. Across what were often lengthy treatment-seeking pathways, we showed that important influences were hospital advice and media campaigns, social and financial support from family members and others, and cost of treatment.
In this paper we present in detail the gender related influences at facility/health and household/community level that interplay to shape specific elements of treatment-seeking pathways for the wider group of 22 children (ie not only those who were undernourished), including when a child is admitted, who brings the child to hospital and stays with him/her during hospitalisation, and adherence to advice post-discharge
We first present one household story (Box-1) to show how the hospital/health system and community/household gender influences interplay, and how the post-discharge experience for children is inextricably linked to pre-admission and during admission influences.
Box-1: A story of one cohort child admitted in icddr,b Dhaka hospital in Bangladesh aged 6 months with SWK (Household – HH53)
Ali (pseudonym) is seven months old. He lived in a rural area with his father and 20 year old mother until his parents divorced when he was 45 days old. The mother, who has primary level education, moved with Ali back to her own parents’ home in a Dhaka slum, to live with her parents, brother and sister. So people were living in one rented room. The room has a tin roof and walls, which amplifies the high temperatures in summer. Ali’s father refused to keep Ali in the rural home and so Ali’s mum claimed financial support from the child’s father for his costs (food, clothes and treatment, in line with national law). Ali’s father refused to pay. His uncle and aunt were the main income earners in the Dhaka house, but their income from working in garment factories was barely enough to meet the basic daily HH needs of their own parents. So, the additional cost for Ali and his mother became a burden for them. In addition, Ali’s mother needed to pay her layer to fight her case against the child’s father. Although she started to work as a maid to try to earn some money, her own mother (Ali’s grandmother) couldn’t care for Ali and manage all the other household chores. No other relatives lived in the area and the family was never visited by a community health worker (CHW).
Regarding Ali’s health and development since birth - the grandmother said that “the child was not getting enough breast milk by 2 month of age and so was crying after feeding”. She contacted a nearby drug seller she often used because he was friendly and did not ask for tests before giving medicine. He advised the child is given formula to supplement the breastfeeding. They began this. Over the next few months, Ali suffered from diarrhoea several times, lost weight, got ‘bony’ and at 4 months developed measles. To get low cost traditional treatment Ali was taken back to the rural area to stay with his mother while she visited her rural house. There he was recovering and so was returned to Dhaka, but was still weak and so the maternal grandmother gave him vitamin syrup. He soon developed watery diarrhoea. Ali’s mother was worried that her mother was unable to care for her child and so gave up her job as a maid. She was very concerned that if anything bad happened to Ali his father would blame her and submit an objection to the police or court. The drug seller suggested oral rehydration saline (ORS), but even after administering it the child’s condition continued to deteriorate and he started to vomit. So the drug seller referred the child to a hospital, but Ali’s mother did not have the money to go to that hospital and was afraid to travel there alone. A neighbour advised her to go to icddr,b Dhaka for free treatment. Ali’s uncle assisted her with transport costs and accompanied her and the grandmother to icddr,b, where Ali was admitted.
In addition to diarrhoea and vomiting, Ali was diagnosed with SWK. He stayed in hospital for 19 days with either his mother or grandmother always there with him. They were assisted by Ali’s uncle with food. A major concern for the mother during the admission was the child’s father phoning to say, “if anything happens to my son, I will sue you”. She took special care of her child in the hospital for early recovery. Hospital staff noticed that when the grandmother was there without the mother, she would sleep a lot, as she herself was unwell. The grandmother was worried about the other household members who needed her to cook for them. In the end the household pressures were so great that Ali’s mother and grandmother discharged him against medical advice. They did receive counselling from hospital health workers before discharge on recommended food, medicine, water, hygiene and sanitation practices, and illness prevention strategies.
After discharge, despite nutrition counselling, the grandmother felt that breast milk and formula were adequate; and that the child did not need complimentary food. The grandmother also admitted feeling so overwhelmed sometimes that she wished the child would be sent to his father so her daughter could remarry. Although the mother and grandmother worked to follow the hygiene practices and use half boil water advised by health workers, we observed this was difficult to maintain, and within a week of discharge the child was suffering again from cough and fever, and on day 14 developed diarrhoea. Ali’s grandmother attributed this to the mother’s constant colds being transmitted through her breast milk to the child and his constantly wet clothes from urination. She bought medicine from a drug seller which reduced the child’s fever but not his cough. Relatives and neighbours advised against them returning to icddrb in case he died but the mother had faith in them so went following some advice with a cohort study clinician over the phone. He was re-admitted directly into ICU and treated for diarrhoea and pneumonia. He was discharged from hospital 12 days later after he showed signs of recovery.
Post-discharge the mother prepared food at home as per hospital instruction for 3 months. She could afford this because the father had been given a court order to provide. But on the 3rd visit of the social science team the child appeared sick and thin - his aunt had suddenly lost her job and the mother was suspected by the grandmother to be spending some of the child’s money from the father on herself. His cold at the time was considered by her ‘not to a big problem as he’d had it since birth so would recover’. Unfortunately, the child died 180 days after his first discharge from icddr,b hospital.
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In subsequent sections, we discuss key findings (summarised in Table 4) regarding gender related influences on adherence to advice and treatment-seeking guidance following hospital discharge among infants and young children in Bangladesh.
Gender related influences at the facility/health system level
Fewer female medical practitioners being available in healthcare facilities, particularly in rural areas
There was widespread recognition across participants (household members, community representatives and health care providers) that there are fewer female than male medical practitioners available in healthcare facilities, particularly in rural areas; a reported sex difference documented in national databases [16]. Interviewees gave a range of reasons for this pattern, including that few female practitioners are willing to be posted to remote or rural health care facilities and that family members (particularly conservative Muslim men) are more hesitant to allow female practitioners compared to male practitioners to live remotely.
After discharge from the hospital, many interviewees were concerned that provider sex had an important influence on mothers’ willingness and ability to seek prompt care and advice for themselves, with important indirect implications for child related health and treatment-seeking. This was perceived to be a particular concern for less educated young mothers, and for mothers married to conservative Muslim men. Reasons given for mothers’ hesitation in seeking prompt advice and care from male providers were cultural and religious taboos against unmarried men and women interacting. More rarely, concerns about sexual harassment of women by male health workers were raised.
Recognising women’s concerns about interacting with male practitioners, and the implications for treatment-seeking for children, two male practitioners reported developing strategies to encourage women to visit them, including making special efforts to build rapport with women and seeking assistance from female colleagues. Although they felt these strategies were successful, it was notable from other interviews that mothers’ reluctance to seek care from male practitioners also came from, or was reinforced by, other members of their household or community. For conservative Muslim families in particular, a woman talking with a male physician about her own or her child’s illness was reported to be a sin.
The concerns of mothers and family members about a male medical practitioner impacted on their treatment-seeking for children in important ways, including in delaying access to formal healthcare, and influencing their adherence to recommended care and treatment post-discharge. In two of the households we followed up for example, young mothers who had sought treatment for their child from a male practitioner were later forced by elder family members (a father in law and mother in law respectively) to discontinue the treatment. In both cases the father of the child was absent (migrant workers), and these relatives advised that the mother seek treatment from a female healer instead. As one of these mothers recounted:
“I received treatment for my child’s diarrhoea from a male physician against the decision of my mother-in-law. For this reason, my mother-in-law had stopped talking with me. So, I had to discontinue the treatment to make my mother-in-law happy and went instead to a female healer as she suggested. [Going there] did not help the child recover.”Mother, Rural,HH01
For their part, many men were not comfortable taking their children to male physicians because they felt it was their wife’s role. They felt they did not have as in-depth knowledge as their wives of the illness history, and that physicians expect to get such detailed information from women as the usual primary caregivers of children.
Nonetheless, the sex of the provider was not felt to be important for everybody in relation to children’s health and associated treatment-seeking, particularly in urban Dhaka. Some interviewees mentioned that relatively educated, wealthy and employed women, and women who already have significant interactions with men beyond their family, were not as likely as others to be as concerned. Absence of older in-laws with more traditional views was also considered important. One mother explained:
“I am used to talking with men in my workplace (garment factory) where both men and women work together. My husband does not mind this as he also works in the same working environment. So I never hesitate to talk with a male health worker about the illness of my child, or even about my own health problems.” Mother, Urban, HH55
It is also noteworthy that the sex of the medical practitioner appeared to be less of a concern for large urban hospitals where children were re-admitted, compared to the smaller local health facilities in rural areas. The reason for this was unclear. We however think that this could be pegged to the severity of the child’s illness by the time they are being re-admitted into these larger hospitals; as well as patients and parents being less isolated in these facilities compared to when in smaller, especially rural, facilities.
Male caregivers preferring not to stay in the paediatric ward with (re)-admitted children
We observed, as expected, during initial admission and re-admissions that children in the paediatric wards were generally cared for by female relatives of various ages, with men visiting their admitted children occasionally to bring money, supplies and to catch up on their children’s progress. One of the main reasons for this pattern is that childcare is primarily considered to be in the female domain while income earning is primarily in the male domain. Children’s fathers were often described as needing to be out earning an income to support their family members, especially given the financial needs and constraints related to the child’s illness and admission. Also, many children were still breast feeding and therefore needed their mothers there with them wherever possible.
Where women were employed or had particularly high work burdens in their homes, they reported that they could not ask their husbands to take over from them in the wards because reportedly (by health workers) nurses and physicians did not want fathers there, and fathers also felt uncomfortable about it as they did not want to be the ‘only men’ there. Part of this discomfort for the health staff and parents was that there is little privacy in the wards, and it is difficult for other women to breastfeed their children if there are men in the wards; linked to general cultural and religious norms in this context around what is appropriate ‘mixing of sexes’.
The above challenges contributed to some employed mothers, and some mothers with many other responsibilities in their homes, to discharge their children against medical advice, failing to follow post-discharge advice and resisting re-admission to hospital. As one urban mother explained:
“My husband does not feel comfortable in the wards and so prefers not to stay there looking after my child during my working hours. He was available to help at that time due to his unemployment but I had to take care of my child during re-admission [in another hospital] for a few days. This led to me losing wages. Because of the income loss I could not purchase the prescribed medicines. In the end I made the decision to take discharge against medical advice.” Mother, Urban, HH55
As women are allowed and able to stay in the hospital, they generally have much more interaction with facility health providers than male relatives or other family members. They therefore receive much more advice than their male counterparts on children’s feeding, hygiene and medication practices. Nonetheless, once they are discharged and are back home, it can be difficult for them to implement this knowledge. One reason for this is that these women often have multiple chores to attend to and so may have to hand over some of the child’s care to others in the home (without an accompanying handover of the information obtained from the hospital). At the same time, due to household hierarchies and dynamics, their knowledge and views – even if based on information given in hospitals - may not be as highly regarded as that of men and elder women. As an adolescent mother from an extended urban household explained:
“I was trained during admission in the icddr,b hospital on providing medicine, food, and properly breastfeeding my child. After discharge, I had to get back to doing household chores. Other family members - particularly my mother and father-in-law - took care of my child most of the time. So I could not provide food and medicine directly to my child. I suggested that they wash their hands before preparing and providing food and medicine to my child, but they did not listen. Sometimes I was scared to ask them to maintain the proper child care practices. Since I am the youngest and least experienced woman in childcare in the house, they didn’t really value my suggestions.” Mother, Urban, HH59
Family members' concerns linked to the sex of community health workers
In contrast to the sex distribution of medical practitioners, there are far fewer male, as compared to female, CHWs in Bangladesh. According to national guidance, government and NGO linked CHWs can support with the well-being and treatment of young children through providing advice on where to seek care, and counselling on food and hygiene practices, including post-discharge from hospital. Nonetheless, very few of the household members we talked to reported consulting or getting support from CHWs, despite many being eligible according to national and local guidance.
Three CHWs aged above fifty years felt that their sex did not impact on their ability to perform their expected tasks, and in fact assisted them to get easy access to households. However, several other younger CHWs, and particularly those with less formal education, reported that they faced a range of challenges. Firstly, they felt that male family members did not value their advice as much as women did, and so when women were out working and only male household members remained in homes, it was uncomfortable to enter homes with children in need. Young and unmarried female CHWs in particular felt shy about and even feared talking alone with older men in households. Furthermore, male CHWs although fewer, also faced gendered concerns regarding interacting with women alone, particularly in communities that did not know them well. As one male CHWs explained:
“Previously I faced challenges working with women to ensure child vaccine coverage as I was posted in an unknown community. I had to spend a lot of time talking with male household members to establish good rapport to get easy access to the household and to talk to women about the required health services for their children. Now I am not facing such problems as I transferred to work in my own community where everybody knows me very well since birth. [there are no questions of] Who I am? Whose son?.” Community health worker, Rural, CHW03
Secondly, many volunteer CHWs of BRAC [Bangladesh Rural Advancement Committee-an NGO] are provided support with women’s empowerment and to prevent domestic violence in addition to the services for child well-being. Their services for preventing domestic violence reportedly led to some female CHWs being prevented by their own husbands to go and visit homes (had security concerns for their wives). It also led to some female CHWs being prevented from visiting households by men, with negative implications for CHW’s ability to support children following hospital discharge. As one CHW reported:
“Some mothers discussed with us about the domestic violence by their husband and wanted suggestions from us [about what they could do]. The husbands then found out that their wives had received suggestions from me about how to handle illegal behaviour. Later I was not able to access those households to perform my regular duties [including child monitoring]. I knew about [the law] because I received training about violence against women from BRAC.” Community health worker, Urban, CHW25
A related concern for female CHWs of BRAC was that they were sometimes restricted by their own partners in going out of their homes to conduct their CHW roles. As already noted above, this was sometimes related to concerns about their women’s empowerment agenda, or more generally to conservative religious views regarding women interacting with non-family males. Other reasons included female CHWs having a heavy burden of responsibilities in their own homes in addition to their voluntary role as CHW, and husbands being concerned about their wives having extramarital relationships.
Thirdly, use of mobile phones is important in getting in touch with children’s mothers. However mobile phones are sometimes controlled by men in households making it difficult to reach women over the phone to provide advice and support. This was especially the case in households having only one mobile phone and in more conservative Muslim families. Male family members were reportedly concerned that access to a mobile phone by young and middle-aged women increased the possibility of an extramarital relationship.
Gender related influences at the household/community level
Gendered roles and relations
Most interviewees reported a strong gender difference in household roles, with many suggesting that women overall work longer hours than men (largely in unpaid care and farm work and sometimes in paid jobs), especially in poor households with few income earners. In addition to the care of their children, women are primarily responsible for regular household chores, farming activities and sometimes (especially in urban areas) income earning work outside the home. In contrast, men were generally reported to play the main income-earning role, working 4 to 8 hours in a day outside of the home, and to spend the remaining hours socializing with others, watching television, sleeping and – rarely - assisting their female partner in caring for their children. Given this broad division of roles and responsibilities, it is typically the child’s father who is responsible for paying for a child’s food and health care, and the child’s mother (with the support of other female relatives) is responsible for ensuring that the care and treatment is given.
Interviews with fathers suggested that it is unusual for fathers to directly care for their children or give treatment and that many feel uneasy and inadequately prepared to do so. Furthermore, given societal norms about appropriate gender roles, it might be frowned upon in the local community if a husband is seen to be undertaking these perceived ‘feminine’ tasks. There was also a suggestion that a father may not have a similar level of love for his child compared to a mother.
Interviewees mentioned that this range of responsibilities for mothers can mean that mothers with children admitted in hospital are keen to return home as quickly as possible, contributing to early discharge. For mothers this heavy workload can also contribute to some post-discharge advice not being followed. Where mothers have to go out to earn an income and lack of support from their male partner, particularly in the urban areas where there are more employment opportunities and higher costs of living such as rent, children’s follow up care post-discharge may also be compromised. Two working mothers commented for example that when their children were ill post-discharge, they had to take them to their workplaces because they did not have a suitable caregiver at home. At their workplace - despite wanting to - they were unable to follow hospital instructions, due to work demands.
Several rural interviewees mentioned that women in conservative Muslim families with husbands who have migrated away for work are not allowed to move alone outside of the home and so cannot access a health centre to get care for their ill children unless accompanied by male relatives. For children who are still breast-feeding and advised by hospital health workers to continue this post-discharge to prevent illness and reduce undernutrition, additional gender-related concerns arise. These include norms around lactating women being asked to serve others in the household before themselves particularly in extended families, leading to their going hungry (with negative implications for milk production). Also, young men with low education levels reportedly worry that if their wives breastfeed their children regularly, their breasts and body shapes will be less attractive (contributing to early cessation of breastfeeding).
Women’s access to household resources, and decision-making power
In this study context, traditionally and to date, men and elders have financial control over the household’s income and other resources. This applies even to employed women who sometimes cannot access the income that they have earned, as cultural norms dictate that they should give their income to their husbands (see illustrative quote below). Many interviewees mentioned that women’s lack of access to household resources can prevent them from being able to follow hospital advice post-discharge, and work against them bringing their ill children to a physician as needed. One mother explained her situation:
“As per instructions from my mother-in-law, I am supposed to give my monthly salary to my husband for household expenditure. I told my husband [once during post-discharge] to take my sick child to a physician, but he did not do anything. Later on, I asked him for money so that I could take the child for treatment, but he still would not give it to me. Instead, he beat me for asking for it! Over time, my child’s illness got worse. Fortunately, I was able in the end to borrow some money from my brother and friends and so could bring my son to the hospital where he was admitted because he was so severely ill”. Mother, Urban, HH55
Accessing funds from a child’s father can be even more challenging where parents are separated or recently divorced. In another situation of divorce in an urban area, the father brought his child forcefully from the child’s mother to live with his family. The carer of the child (an unmarried aunt) could not provide breast milk to the child, which was felt to have contributed to repeated diarrhoea and weight loss of the child post hospital discharge.
Many interviewees described that a child’s father and other household elders (e.g. grandparents) make decisions about all family matters, in particular those with financial implications. This includes decisions about the food, medicine, and treatment-seeking needs of children, including in the post-discharge period. Reasons included women being considered outsiders to a home (having only come in from another home on marriage), and as the carriers of children rather than their main creators. Women’s agency to make decisions regarding care of their children post-discharge was therefore limited in many extended households. Extended family members also helped mothers in caring for children when they were busy with household chores. This agency and assistance was generally reported to increase with age, education, employment and where women were bringing money into the household from their own parents’ home. This highlights important intersections of gender with other social categories to increase women’s ability to play a role in their children’s care and make related decisions.
Beyond generally having low decision-making power, five mothers with relatively low formal education directly reported that their husbands were unwilling to listen to the advice mothers had received during their child’s admission with regards to the types of food the child should be given and where they should go for treatment. They attributed fathers’ unwillingness to listen to a deliberate intention among fathers to maintain their leadership status in household. They said they were unable to challenge their husbands’ behaviour as perceived disrespect of husbands could result in violence. Four mothers for example reported being obliged to go to healer or drug-seller for their child’s treatment against the mothers’ wishes. Below is an illustrative quote of one such instance:
“The father of the child brought medicines from the local drug shopkeeper for my child despite having the prescribed medicines by a hospital physician to continue at home after discharge. He has forbidden me from continuing with the hospital medicines because of the child’s delayed recovery and instructed me to start the drug seller's medicines instead. I was obliged to do it, otherwise he will beat me.” Mother, Urban, HH54
Mothers, particularly those not earning an income or in precarious relationships, also reported being hesitant to seek treatment for their children from medical practitioners against their husbands’ wishes as they would be blamed for any unintended adverse events (i.e. deterioration of illness condition, treatment failure or death), and risk being beaten or divorced. One mother noted that hospital staff had advised against giving street food to her child to prevent illness (i.e. diarrhoea, fever) or against seeking treatment from healers or untrained medical practitioners. However, family members did not listen to the mother post-discharge, which she felt was unfair, given that she is also blamed when the child gets ill:
“An uncle of the child brought outside food (low quality bakery food) to feed my child. He quarrelled with me when I told him to avoid those food items to prevent the illness of my child, but he still gave the food to the child. But other family members often blame me when the child gets ill which I think is totally unfair.” Mother, Urban, HH59
Greater reluctance among parents to invest money and time in the treatment of daughters over sons
There was a widespread perception among participants (household members, community representatives, and health care providers) that boy children are generally given more food and medicine, and are better breastfed and cared for, than girl children. During the post-hospital discharge period, in a few households where direct choices had to be made, parents selected care for their older boys over younger girls. The main reasons given for these patterns were that boys are expected to go on to provide financial and non-financial support to their parents in later years and maintain the father’s lineage, whereas girls are expected to leave the family after marriage and provide service in their marital homes as described above.
We observed in our interviews a general difference in the handling of boys and girls, and of more respectful interactions and better support for mothers from their husbands in relation to boy children. For example, during one of the visits to the household of a male child living in the rural site, the father asked his wife to provide medicines to their son in time given that the son is ‘our asset, future, and bank’.
Conversely, there appears to be less support to mothers with girls, with one mother explaining that she had become pregnant too early after the delivery of a girl to fulfil her husband’s desire for a baby boy. Another mother reported being depressed because her husband intended to get another wife in the hope of getting a baby boy. Five mothers reported that in their households, fathers would prioritise their elder boys over girls in buying food in times of significant financial hardship.
In terms of meeting post-discharge treatment-costs and completion of treatment courses, several mothers mentioned that there was a preference for boys, or at least special concern for them. As two mothers explain:
“My child [girl] was re-admitted to hospital with diarrhoea, pneumonia, and fever. The condition of her illness did not improve after staying for a week in the hospital. The child’s grandmother said, ‘the child’s condition is so bad she’ll not survive, so why you are staying in hospital? Instead you should go back home to look after your elder male children for their future’.” Mother, Rural, HH05
“This is our much waited for boy having already given birth to two girls. Recently, my son was admitted to the hospital twice for his illness. We had to spend a lot of money to cover his treatment. His father sold his agricultural land in our rural home to cover it, and he took an urgent loan from a local NGO. We sacrificed our own foods, sometimes eating less and missing out on other basic needs.” Mother, Urban,HH62
A community representative and health worker reported that girls’ conditions are sometimes more severe due to delayed treatment-seeking, and that there are higher death rates among girl children during re-admission and post-discharge as a result. Interestingly, this pattern was not seen in the CHAIN quantitative data across all cohort children in the two study sites, but some nevertheless describe it as a reality:
“Female children often die in the hospital due to the delay in treatment-seeking and late re-admission. However, this [the death of a girl child] is not a big matter for parents, but the death of a male child is considered a big loss for them”. Community representative, Rural, CR-KII-19
One community health worker mentioned that her counselling strategy worked well to motivate some parents to seek early treatment for their girl children from a medical practitioner. She reported giving real-life examples of successful women (e.g., the female prime minister of the country) whose success can be attributed at least in part to their parents’ support.