Following an overview of participant and household characteristics, and of children’s treatment-seeking trajectories and health outcomes, we present the key influences on treatment-seeking and post-discharge recovery from the perspective of children’s family members and frontline health providers. Influences are grouped according to our conceptual framework domains (Figure 1).
Participant and household characteristics
The main characteristics of the 17 children involved in the qualitative work are summarized in Table 1. Of the 9 urban children, 6 were SAM, 3 were MAM, and all had experienced a disruption in the family, including recent migration, separation or income-earning loss among parents, maternal illness or a change of caregiver. Of the 8 rural children involved, 4 each were SAM and MAM, with 6 having experienced a family disruption. Across both sites, children were admitted into the hospital and enrolled into the main CHAIN cohort aged 4 to 16 months, with all reported by parents as having been sick on and off since birth. Given that icddr,b hospitals treat children with diarrhea, all children had diarrhea on admission, usually with other symptoms including vomiting (n=10), fever (n=7) and pneumonia or severe respiratory distress (n=5, all urban). In terms of broad representation of selected participants with wider cohorts in the two sites, we note that our selected children are broadly similar in education level of main caregiver (most are primary school educated or below), in having no reported income, having low levels of food security and in asset scores.
Table 1 Participant and households characteristics
ID
|
Children characteristics
|
Mothers characteristics
|
Households characteristics
|
Nutritional status
|
Age (months)
|
Sick since birth?
|
Other illness at admission
|
Sex
|
Caregiver
|
Age
(years)
|
# of kids
|
Marital status
|
Education level (completed)
|
Employment status
|
Family structure
|
Size
|
Social disruption before admission
|
Income source
|
Decision maker
|
Urban
|
HH52
|
SAM
|
14
|
Yes (Cough, fever)
|
Diarrhea, fever, pneumonia
|
Girl
|
Mother
|
20
|
3
|
Married
|
Illiterate
|
Housewife
|
Nuclear
|
5
|
Household change
|
Carpenter
|
Father
|
HH53
|
SAM
|
6
|
Yes (Fever, cough)
|
Diarrhea
|
Boy
|
Mother
|
20
|
1
|
Divorced
|
Primary
|
None
|
Extended
|
8
|
Household change
|
Garment worker
|
Grandmother
|
HH55
|
SAM
|
4
|
Yes (Fever)
|
Diarrhea, vomiting
|
Girl
|
Maid servant
|
19
|
1
|
Married
|
Primary
|
Garment worker
|
Nuclear
|
4
|
Caregiver changed
|
Garment worker
|
Father
|
HH57
|
SAM
|
4
|
Yes (Fever, cough)
|
Diarrhea, cough, fever
|
Girl
|
Mother
|
16
|
1
|
Married
|
Primary
|
Housewife
|
Extended
|
6
|
Migration from rural to urban, parents sickness
|
Garment worker
|
Maternal grandmother
|
HH51
|
MAM
|
8
|
Yes (Coldness, diarrhea)
|
Diarrhea, fever, oral thrush
|
Boy
|
Mother
|
17
|
1
|
Married
|
Primary
|
Housewife
|
Nuclear
|
3
|
Migration from rural to urban, wage loss
|
Bakery shop worker
|
Father
|
HH59
|
MAM
|
4
|
Yes (Fever, coldness)
|
Diarrhea ,fever
|
Girl
|
Mother
|
17
|
1
|
Married
|
Primary
|
Housewife
|
Extended
|
5
|
Migration from rural to urban
|
Garment worker
|
Father
|
HH60
|
SAM
|
8
|
Yes (Coldness)
|
Diarrhea, pneumonia
|
Girl
|
Mother in low
|
35
|
3
|
Married
|
Illiterate
|
Small restaurant business
|
Nuclear
|
5
|
Mothers’ sickness
|
Car driver
|
Father
|
HH62
|
MAM
|
4
|
Yes(Diarrhea)
|
Diarrhea,
severe respiratory distress
|
Boy
|
Mother
|
35
|
3
|
Married
|
Illiterate
|
Housewife
|
Nuclear
|
5
|
Mothers’ sickness, caregiver change
|
Small business
|
Father
|
HH63
|
SAM
|
7
|
Yes (Breathing difficulties, fever)
|
Diarrhea, pneumonia
|
Girl
|
Aunt
|
19
|
1
|
Divorced
|
Secondary
|
-
|
Extended family
|
4
|
Wage loss
|
Garment worker
|
Grandmother
|
Rural
|
ID
|
Children characteristics
|
Mothers characteristics
|
Households characteristics
|
Nutritional status
|
Age (months)
|
Sick since birth?
|
Other illness at admission
|
Sex
|
Caregiver
|
Age
(years)
|
# of kids
|
Marital status
|
Education level (completed)
|
Employment status
|
Family structure
|
Size
|
Social disruption before admission
|
Income source
|
Decision maker
|
HH04
|
SAM
|
10
|
Yes (Diarrhea, fever)
|
Diarrhea, fever
|
Girl
|
Mother
|
20
|
3
|
Married
|
Secondary
|
Housewife
|
Extended
|
9
|
Mother’s sickness, twin baby
|
Day labor
|
Grandfather
|
HH08
|
SAM
|
5
|
Yes(diarrhea, urine infection)
|
Diarrhea, vomiting
|
Boy
|
Mother
|
26
|
2
|
Married
|
Secondary
|
Housewife
|
Extended
|
10
|
Mother’s sickness
|
Worker in abroad
|
Grandfather
|
HH12
|
SAM
|
9
|
Yes (fever)
|
Diarrhea
|
Girl
|
Mother
|
23
|
2
|
Married
|
Secondary
|
Housewife
|
Nuclear
|
5
|
None
|
Clerk
|
Father
|
Hh10
|
SAM
|
14
|
Yes(fever, coldness)
|
Diarrhea, fever
|
Girl
|
Mother
|
35
|
3
|
Married
|
Secondary
|
Housewife
|
Nuclear
|
5
|
None
|
Night guard
|
Father
|
HH01
|
MAM
|
11
|
Yes (cough & coldness)
|
Diarrhea, fever
|
Boy
|
Mother
|
23
|
3
|
Married
|
Secondary
|
Housewife
|
Extended
|
9
|
Mother’s sickness
|
Worker in urban Dhaka
|
Grandmother
|
HH02
|
MAM
|
6
|
Yes (fever)
|
Diarrhea, fever
|
Boy
|
Mother
|
24
|
2
|
Married
|
Secondary
|
Housewife
|
Nuclear
|
4
|
Parent sickness, wage loss
|
Day labor
|
Father
|
HH03
|
MAM
|
11
|
Yes (Fever & urine problem)
|
Diarrhea, vomiting
|
Girl
|
Mother
|
25
|
2
|
Married
|
Primary
|
Housewife
|
Nuclear
|
4
|
Mother’s sickness
|
Carpenter
|
Father
|
HH05
|
MAM
|
16
|
Yes (Coldness, pneumonia & diarrhea)
|
Diarrhea, vomiting
|
Girl
|
Mother
|
33
|
3
|
Married
|
Secondary
|
Housewife
|
Extended
|
6
|
Wage loss
|
Carpenter
|
Father
|
Children’s treatment-seeking trajectories and health outcomes: an overview
Most family members of the 17 children reported that children had been ill for some time prior to admission in icddr,b hospitals. There had also been significant treatment-seeking efforts by the time of admission, including many having visited drug sellers, healers, private doctors and public hospitals (Table 2). Many family members in both rural and urban areas reported trying several of these treatment-seeking options sequentially or in parallel.
Table 2 Treatment-seeking patterns for the index child’s illness pre-admission
|
Rural
|
Urban
|
Total
|
|
SAM (N=4)
|
MAM (N=4)
|
SAM (N=6)
|
MAM (N=3)
|
N=17
|
Visited a healer pre admission
|
4
|
4
|
2
|
1
|
11
|
Visited a drug seller pre admission
|
4
|
4
|
4
|
1
|
13
|
Visited another facility/doctor pre-admission
|
2
|
4
|
5
|
2
|
13
|
Visited a CHW pre admission
|
0
|
3
|
0
|
0
|
3
|
Was admitted in another facilities before coming to icddrb hospital
|
1
|
2
|
0
|
1
|
4
|
During initial hospitalization, we observed that hospital health workers teach the child’s caregiver about food preparation and preservation processes and complementary feeding practices such as maintaining minimum dietary diversity, meal frequency, using a spoon instead of fingers or a bottle for feeding, and avoiding drinking cold food/water. They also organize demonstration sessions on breastfeeding, hand washing, and using treated water for cooking and drinking purposes. The need to maintain hygienic practices to support early recovery and prevent new illnesses is emphasized. On discharge, hospital health workers were also seen to advise caregivers to continue with prescribed medicine, complete vaccines, breastfeeding (noting that employed mothers can store breast milk), and feeding homemade food. In addition, hospital health workers gave caregivers their mobile phone number so that they could be contacted for post-discharge communication and to prescribe any further medicines needed.
13 of the 17 children had fully recovered by the time we completed our interviews; 4 had died (3 in the urban site and 1 in the rural). One of the children who died did so before discharge. Two of the 16 children discharged alive had been discharged from the icddr,b hospitals against medical advice (one per site, both SAM). Post-discharge, most parents reported that children took time to recover, with many experiencing new episodes of illness. Eight visited a healer over the post-discharge period, 14 a drug seller, and nine another health facility. 11 were re-admitted either back to icddr,b or into another hospital (Table 3).
Table 3 Discharge and post-discharge treatment-seeking patterns for the index child’s illness
|
Rural
|
Urban
|
Total
|
|
SAM (N=4)
|
MAM (N=4)
|
SAM (N=6)
|
MAM (N=3)
|
N=17
|
Recovered
|
3
|
4
|
4
|
2
|
13
|
Discharged against advice
|
1
|
0
|
1
|
0
|
2
|
Visited a healer post-discharge
|
2
|
3
|
2
|
1
|
8
|
Visited a drug seller post- discharge
|
3
|
4
|
4
|
3
|
14
|
Visited another facility/doctor post discharge
|
2
|
0
|
4
|
3
|
9
|
Visited a CHW post-discharge
|
0
|
2
|
1
|
0
|
3
|
Was re-admitted
|
1
|
3
|
4
|
3
|
11
|
The caregivers of selected children mentioned more treatment-seeking actions and greater use of traditional healers. This difference was also observed between quantitative and qualitative responses for our selected participants, suggesting greater openness and amount of detail in the latter, as would be anticipated.
In subsequent sections, we highlight key influences and impacts on post-discharge treatment-seeking and recovery. However, to illustrate complexities of treatment-seeking patterns and influences, and the interplay of vulnerabilities and abilities, we first present two contrasting household stories: one from an urban and one from a rural household (Boxes 1 and 2). These stories also show how the admission and post-discharge experience for children is inextricably linked to their pre-admission situation and experience.
Box 1- Story of a rural child aged 14 months with SAM in Bangladesh (HH10)
Mother had three children and the enrolled child’s birth order is third. Mother age was 35 years, completed secondary education and housewife. Father is a day labor. This is a nuclear family with 5 HH members, living in a one room house they built. Sometimes the child’s aunt provided financial support. They have their own toilet (ring slab) but it looked unhygienic and they collect water from their neighbor’s tube and drinking without treat. Since birth, the child had been suffering from cough, fever and diarrhea frequently and received treatment from healers and nearest drug sellers.
For this admission, The child had watery stool for 5 days. The mother presumed, this was because her child drank contaminated water from a bowl left in the courtyard to collect rainwater. When it first began, the father bought medicine the next day from the village doctor, but she did not get well. She got weaker and the frequency of her stool increased from 5–6 times a day to more than double. On the fifth day, the parents decided to take her (child) to icddr,b hospital as per GM and aunt’s suggestion.
The mother did not report anything difficulty, while in the hospital. The child liked to have milk Semolina that was provided from the hospital. So her mother learned about its preparation process in order to continue to take better care of her child at home. Her diarrheal condition improved within 3 days of admission.
Before discharge the mother was again counseled about food preparation, feeding practices, child caring, hygiene practices and basic medicine administration procedure. Nurses gave some medicine to continue after discharge.
After discharge: The mother prepared food for the child as per hospital’s instruction for about 1.5 months. But it stopped when the father lost his job and they had to depend on savings. The mother’s hygiene practices were also observed to slip over time, and the child was given low quality readymade food because she refused to take the homemade ones.
The mother did not give her child the medication which was prescribed from the hospital: she felt child no longer required it, since her condition had improved, and that took much medication might adversely affect the child.
After 45 days of discharge, the child was suffering again from fever and cold. The mother thought that it happened because the child frequently played with rain water while there was no one to look after the child. Nevertheless, the mother did not seek any further treatment for the child. She explained “Since I am also suffering from cold and taking medication for it, so my medicine will be transferred to my daughter through breast milk, so she does not need to take any further medication”. The cold persisted till 180 days of discharge from hospital.
|
Box 2 - Story of an urban child aged 6 months with SAM in Bangladesh (HH53]
The child was born in a rural area but moved to Dhaka at aged 45 days, 20 years old mother and divorced. They moved into one room with the mother’s maternal family; trying to meet daily needs through garment factory work. At 2 months the child was crying after breast-feeding. The grandmother felt he wasn’t getting enough breast milk and was advised by a nearby drug seller to get formula. But the child continued to deteriorate and by 4 months was skinny and developed measles. To get low cost traditional treatment he was taken back to the rural area, but returned weak and soon developed watery diarrhea. Despite vitamin syrups and later ORS from drug sellers the child’s condition continued to deteriorate and he started to vomit. The drug seller referred the child to a hospital, where he was referred on to icddr,b and admitted.
For this admission: The child stayed in the hospital for 20 days. Hospital staff noticed that when the mum was not there, the grandmother often slept, because she herself was unwell. The child was not recovering so the mum and grandmum consulted a diviner about whether or not to leave the hospital, who advised that they stay. Two further major concerns for the mother and grandmother during the admission were who would be cooking for the other household members at home, and the child’s father phoning the mum to say, “if anything happens to my son, I will sue you”.
After discharge: Despite nutrition counseling, the mother felt that breast milk and formula were adequate; that the child did not need complimentary food. The GM admitted she sometimes felt so overwhelmed she wished the child would be sent to his father so her daughter could remarry. Within a week of discharge, the child developed cough and fever, and on day 14 diarrhoea. Relatives and neighbors advised against returning to icddrb in case he died but the mother had faith in them so went. He was re-admitted for 12 days with diarrhea and pneumonia.
The mum prepared food at home as per hospital instruction for 3 months; affordable because the father was issued a court order to provide. But on the 3rd follow-up visit the child appeared sick and thin-his aunt had suddenly lost her job and the mum was suspected 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 he would recover. Unfortunately, the child died not long afterwards.
|
[Boxes 1 and 2 to be placed here]
Socio-cultural and environmental influences on treatment-seeking and outcomes
Mothers’ workload in homes and levels of support from others
Many rural and urban women had very heavy household workloads, including cooking and serving meals, washing clothes, rearing domestic animals, and harvesting rice in the paddy fields. Mothers’ need to return to their household work was reported to be an important influence on their decision to discharge their ill children against medical advice. Parents generally felt that since their child’s condition was improving, and was no longer life-threatening, it was a greater priority to get home to their other responsibilities than to stay in the hospital for an additional few days. As one mother explained:
“While I was staying in the hospital, my ability to care for my husband and elderly mother-in-law were disrupted, and also my rearing of domestic animals [for income]. So, I decided I had to take my child home against the doctor’s advice.” Mother, Rural. HH 5.
These workloads also made it challenging for mothers to adhere to nutrition, hygiene, and treatment advice at home and to bring their children back to the hospital or facilities as advised.
Mothers who were able to keep their children in hospital for the recommended period, and to adhere to advice post-discharge, were able to draw on support from other family and community members during hospitalization and post-discharge, with assistance most often coming from husbands, older children, other close relatives, and female neighbors.
Practical support from female relatives and friends was particularly important. For example, four rural mothers visited their own mothers’ home in the immediate post-discharge period to get support from grandparents and aunts in providing medicine, and preparing and providing food as per hospital-physician advice. In one case (HH 08), a maternal grandmother and aunt visited the child’s home to assist the mother with household chores as the mother focused on the child’s care. Some husbands were also reported - and observed - to assist practically:
“I and my wife have decided to work outside of the home at different times to take care of our child properly. So, I work at night when my wife can take care of my child and my wife works during the day when I can stay at home to take care of my child. I think that both of us need to work to fulfill our basic needs properly and it’s important to look after our child as we love her very much.” Father, Urban, HH55.
In the rural HH12’s case, a close relative who resides nearby a health facility had guided the parents of the child over mobile phone to re-admit their ill child in an urban private hospital in order to get what was perceived as better treatment.
Family and friends were clearly an important source of information and advice for mothers when their children remained sick or did not recover at the desired pace. Some urban mothers were new to the area and therefore unfamiliar with the locality, and so relied particularly heavily on longer term residents’ advice. While some advice was to seek prompt care from trained medical practitioners or from government health care facilities, many mothers reported following advice to purchase medications from drug sellers or general shops or to simply dress their children more warmly. Common purchases for diarrhea were oral saline, and for coughs and fevers were Napa syrup (Paracetamol).Some advice entailed the use of traditional medicines or treatments, as described further below in the beliefs around etiology of illness and related treatment.
Abuse of mothers by family members and reported links to depression
Even with support of others, mothers described having to achieve a challenging balance between adequately fulfilling household chores and child care responsibilities with putting aside a specific time and effort to support the discharged child’s recovery. Several expressed concern about the difficulty of maintaining their relationships with their husbands and their reputation in the wider household and community. As one mother explained:
“Since I have to cook meals three times a day, serve food to others, [and] clean the households and clothes, it is really difficult for me to [also] provide food and medicine, breastfeed, and bath my child on time. After doing household chores all day long, I am so tired, particularly at night, and often feel ill, which adversely affects the health care of my child. Unfortunately, my husband blames my improper childcare for my child’s illness. And if I say something to retaliate against my husband’s comments, others might treat me as a bad woman or wife.” Mother, Urban. HH52
Several mothers directly attributed their child’s failure to recover quickly to their difficulty in managing all of these tasks. One talked about her child being exposed to rain and cold as a result of her work, and another about hiding her child’s condition from others out of a concern about being blamed for it. Notable was that four different mothers openly reported that their child’s failure to recover resulted from their own exposure to mental and physical abuse from their husbands and mother-in-laws. As one mother described:
“My husband often beats me unnecessarily when drunk or when I do not provide the amount of money he has demanded from my father’s home. So I am really reluctant to provide medicine and food in time [for the discharged child] as per hospital-physician advice [because he will think I have more money I am hiding]. I think my husband dislikes me very much and wants our separation.” Mother, Urban, HH5
Three other mothers reported being told by husbands after the child’s discharge not to give medicines at home, or not to leave home to go to health facilities. Such instructions may be based on jealousy of mothers’ potential interactions with other men, or concern that the treatment is an unnecessary cost. Two of these mothers reported having been beaten previously by their husbands for taking their children to medical practitioners despite having been forbidden. They were fearful to do so again. Mothers reported that this abuse, and fear of it, led to them being depressed, and to marital separations, both of which reduced their affection and attention towards the care of their ill children.
Beliefs about the etiology of illness and perceptions about the usage of medicines
Some parents were aware of key danger signs and child illness symptoms, and their prevention and treatment, with many discussing have learned about this during their child’s hospitalisation. Several also mentioned having learned about this through a television documentary broadcast by the Government’s Ministry of health and family welfare.
While many family members made significant efforts to follow the discharge advice given at icddr,b hospitals, it was clear that some felt that the child’s ill-health was caused by a range of alternative causes rather than biomedical or nutritional explanations. For example, there were descriptions of children’s failure to recover or a new illness being caused by a supernatural air having a spiritual power over the child, or by a child being affected by an ‘evil eye’ cast by someone in the community (including via the mother through breastmilk). A mothers’ spicy diet was also felt by some to result in diarrhea in their breastfeeding child.
“My child suffered from diarrhea because I ate spicy food which was transmitted to the body of my child through breastfeeding. So I discontinued breastfeeding my child.” Mother, Rural. HH07
Beliefs about what caused the child’s ill health, together with advice of family, friends and neighbors, influenced treatment-seeking decision-making and action. For example, a child believed to have diarrhea caused by an evil eye was taken to a spiritual healer who provided a blessed metal object to tie around the neck and hands of the children or mothers. Children believed to have diarrhea caused by supernatural air were given herbal medicines and sacred water to drink. As with the above example, some mothers opted to discontinue breastfeeding and switched to formula milk.
Households’ environment: water, sanitation and hygiene practices
Children’s family members and community representatives felt that household and community environments undermined children’s recovery, particularly in the densely populated urban slums where there is poor waste management, drainage and ventilation.
“Please let’s see in the slum: a discharged child is walking and playing with the dirty logged water and sometimes putting water into her mouth. In this area, we often have water trapped after rain because of the inadequate drainage systems. And the water is filthy, contaminated by dirty things such as open sewers, urine, and home debris. Sometimes we even see open stool in the water. Can you imagine how dangerous that is for children?.” Community health worker, Urban, KII-51
In these very challenging social and physical environments, some caregivers were observed to have less-than optimal hygiene practices that may have contributed to the spread of diseases; for example using toilets while barefoot, and washing hands without using soap before going on to feed children:
“The mother left the child with an older kid and went to the toilet barefoot. Having used it she went to the tap and … washed her hands and legs using only water [no soap]. Then she went to the kitchen for cooking and after 20 minutes came back to the living room and started feeding food to her child.” Household observation, Urban, HH55
Economic influences on treatment-seeking and outcomes
In the majority of the households, where money was needed or costs were incurred across the treatment-seeking pathway, the father of the child was generally considered to be responsible for meeting such costs. Men played a more prominent role in supporting mothers financially than assisting with other forms of support. Where the sick child’s father was absent, or was unable or did not want to assist, the range of relatives highlighted in the previous section were important. As one mother mentioned:
“My father sends money (2500 BDT) to me for treatment for my child, as he knows well about the financial inability of child’s father for treating the child.” Mother, Rural, HH5
Mothers in particular had very little access to money in homes, and where they earned an income this was primarily through casual and informal work. Many families were largely living ‘hand to mouth’, juggling multiple demands on their cash, with few savings to draw upon. This influenced their choice of action:
“I have to find money for accommodation, food and clothes from my limited [regular] income. A sudden treatment and transportation cost to bring the child to the hospital is an extra burden for me. The situation is the worst fifteen days into a month when my payment has been used up and when I’m under pressure to repay loans. [so with the child’s illness] we went for low-cost treatment from the nearest drug shop.” Mother, Urban. HH53
In contrast with private facilities which are relatively expensive, the free treatment offered at icddr,b - together with the institution’s services and reputation for quality care – were reported by many family members as a major incentive to seek care there when it was needed post-discharge. Despite this, mothers still faced affordability challenges as a result of transport costs to the facility and the need to purchase basic necessities not required when staying at home. Concerns about these direct and indirect costs, layered on top of the previous treatment-seeking action costs, contributed to some parents discharging their children against medical advice (particularly in the urban area), and to parents being hesitant to bring their children back to hospital post-discharge. As one mother mentioned:
“I did not communicate with the hospital physician of icddr,b using the mobile phone number I was given because I thought they may request us to go there and be re-admitted. We did not have enough cash to pay for travel to the hospital and to cover other costs needed during admission. The costs we’d already had to meet before the admission [initial hospitalization] were the reasons we were short of cash already and I could not manage to find the money we would need from neighbors and local NGOs because we had recently moved from the rural area [so didn’t have anybody to approach].” Mother, Urban, HH62
Nonetheless, some families were able to navigate around these challenges of indirect costs by communicating among themselves and with health workers via phone as illustrated in the following quote:
“I explained clearly over the mobile phone to the child’s father about the loose stool. He brought oral saline straight after consulting with a doctor. I think this is cost-effective for us as we did not have to pay any transport costs to see the doctor and it was a time saving solution also.” Mother, Urban, HH59
Public hospitals, although officially free, were reported by some to require informal payments, such as a small financial incentive to ensure children are seen during ward rounds. Also, physicians in some public hospitals were reported to encourage unnecessary but relatively expensive diagnostic tests or medicines outside the hospital, and there were some reports of brokers being employed by public doctors to attract families to private facilities. As a rural community health worker explained:
“Some physicians of public hospitals nominate people [such as village doctors, rickshaw puller/transport drivers, or hospital health workers] to motivate the parents of the children on the way to the hospital and even during re-admission to bring the patient to the physician’s private facility. Sometimes they [public hospital physicians] prescribe unnecessary diagnostic tests and poor quality medicines because they are incentivized to do so by the diagnostic center and drug company. [Some parents are aware of these practices] and so are reluctant to seek treatment from public hospitals.” Community representative, Rural. KII68
Families’ treatment-seeking stories suggest that a major reason for treating children at home, or for seeking treatment from untrained medical practitioners (such as drug sellers and healers) - even when recognizing that the care might be sub-standard - is a concern about anticipated costs from hospitals.
Mothers’ need to return to their income-earning tasks and to make up for income loss during admission contributed to their need for support from others to care for their child post-hospital discharge.
Health system factors influencing treatment-seeking and outcomes
Costs related to the health system and their influence on treatment-seeking and recovery have been alluded to in the previous section. Also important at the health system level are the perceived quality of care at facilities, and – although raised more by health workers than family members - the reportedly heavy use of antibiotics in many households and communities.
Regarding the perceived quality of care, in general, family members described being very happy with their children’s care in icddr,b hospital. In particular, they appreciated being asked directly about the child’s illness history from health workers, and the supportive and respectful interaction with them in the counseling and demonstration sessions for breastfeeding, complementary feeding and hygiene practices. Many family members mentioned that these sessions improved their health care knowledge and encouraged them to adhere to the treatment advice, and that their new knowledge supported their children’s recovery. For example, three mothers felt that their children’s diarrhea cases had eased off because they now wash their hands with soap, and have switched from bottle feeding to feeding with a clean spoon.
This was in contrast to reports of care received in public hospitals. For example, mothers in three homes who had children re-admitted to a public hospital reported being upset that physicians prescribed medicines based only on talking to the duty nurses rather than to the mothers themselves; as mothers they felt they had a far better understanding of the child’s history than the nurses. Such observations and concerns among mothers undermined their trust in the quality of care being offered, and contributed to their discharging their own children against medical advice and taking them either home or for treatment elsewhere. As one father explained:
“Physicians of the public hospital in Dhaka city are not serious enough to provide good quality care through enough attention and proper interaction with us. This happens because the physicians think that it’s usually only poor patients that come to this hospital, and their families do not have any political power. Besides, the physicians in Dhaka city are really powerful themselves. So they know nothing will happen [to them], even if a child dies because of their improper treatment.” Father, Urban, HH57
Over-use of antibiotics was regularly raised by health care workers as a factor influencing recovery, and as resulting from treatment-seeking actions and advice to family members from friends, neighbours and improperly trained or motivated health providers. Hospital health workers were concerned about treatment failure among some children during re-admission due to the unnecessarily high use of antibiotics prior to admission. Many private physicians and drug sellers were perceived to provide these too early in an effort to build their reputation (and profit) in the community through children getting better fast, and to switch the type of antibiotic far too often. Community medical practitioners of public health care facilities felt that they could not compete with these fast-acting drugs given their recommendation of relatively long treatment courses. Another related challenge is that even where the physicians do not prescribe antibiotics, many family members buy them over-the-counter anyway as they are unaware of the potential individual and public health harms of overuse.