Following an overview of participant and household characteristics, and overall influences on post-discharge treatment-seeking and recovery, we bring together our findings on gender-related influences at health-system/service and household/community level in turn. As we will show, these genders related factors are inter-related and had important impacts on 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 1. 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.
[Table 1 to be placed here]
In an earlier publication, we explored influences on treatment-seeking and recovery for the undernourished children in the CHAIN cohort [39]. Across what were often lengthy treatment-seeking pathways, we showed that key factors influencing treatment seeking and recovery were hospital advice and media campaigns on hygiene practices, positive social and financial support from family members, other relatives and neighbours, and free treatment from icddr,b hospitals. Key challenges to treatment-seeking and recovery of children included mothers having to juggle multiple responsibilities in addition to caring for the sick child, lack of support - and in some cases violence - from the child’s father, and family members’ preference for relatively accessible drug shops, physicians or healers over (re)admission to icddr,b hospitals.
In this paper we present in detail the gender related factors at facility/health system and household/community level that interplay to shape when a child is admitted, who brings the child to hospital and stays with him/her during hospitalisation, and adherence to advice post-discharge.
Gender related factors 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 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 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 gender had an important influence on mothers’ willingness and ability to seek prompt care and advice for themselves, with indirect implications for child related health and treatment-seeking. Reasons given for mother’s hesitation in seeking prompt advice and care from male providers were cultural and religious norms about men and women interacting. More rarely, concerns about sexual harassment of women by male health workers were raised. Recognising such concerns, 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 also impacted on their treatment-seeking for children, 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, mothers who had sought treatment for their child from a male practitioner were later forced by family members to discontinue the treatment and advised instead to seek treatment from a female healer. 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
In turn, many men were also not comfortable taking their children to male physicians (instead of their wives) because they felt they did not have sufficient in-depth knowledge of the illness history that physicians would want to hear, and it was reported that physicians expect to get this detailed information from women since they are the ones who primarily care for the child.
Nonetheless, the sex of the provider was not felt to be important for everybody in relation to children’s health and associated treatment-seeking. 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. As 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 the female domain, and income earning the male domain (described further below). Given the financial constraints and needs that so many families with ill children were facing, many interviewees talked about children’s fathers needing to be out earning an income to support their family members. Also, many children were still breast feeding and therefore needed their mothers there 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 gender of community health workers
In contrast to the gender distribution of medical practitioners, there are far fewer male compared to female community health workers (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 felt that their gender did not impact on their ability to perform their expected tasks, and in fact assisted them to get easy access to households. However, several others 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 CHWs are trained to support with women’s empowerment and to prevent domestic violence. This reportedly led to some female CHWs being prevented by their own husbands to go and visit homes (where those husbands are not supportive of this training or had security concerns for their wives); as well as 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[Bangladesh Rural Advancement Committee-an NGO].” Community health worker, Urban, CHW25
A related concern for female CHWs 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 and women interacting with non-family males. Other reasons included female CHWs having a heavy burden of responsibilities in their own homes, 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.
Gender related factors 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. In addition to the care of their children, women are primarily responsible for regular household chores, farming activities and sometimes 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 care for their children or give treatment directly 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 – while admitted in hospital with their children - are keen to return home as quickly as possible (contributing to early discharge); and that the heavy workload can contribute to some post-discharge advice not being followed. Where mothers have to go out to earn an income, 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 are not allowed to move alone outside of home and so cannot access a health centre to get care for their ill children unless accompanied by a male member of the household. For children who are still breast-feeding and advised by hospital health workers to continue this post-discharge to prevent illness (e.g. diarrhoea) and reduce undernutrition, additional gender-related concerns arise. These include norms around lactating women being asked to serve others in the household before themselves, leading to their going hungry (with negative implications for milk production), and men worrying 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 divorced.
Potentially linked to financial control in households, many interviewees described that a child’s father and other household elders (e.g. grandparents) make decisions about all family matters including 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 after 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 households. This was, however, 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 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 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 divorce. 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 our 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.