Analysis of data yielded 3 main themes with 6 subthemes and several categories. The themes were: Prepared for birth but not ready for complications, Disconnect between caregivers and providers and The bitter impact of maternal deaths. The subthemes were: Basic birth preparation and care seeking routines, Inadequate resources for complications (Under Prepared for birth but not ready for complication); Caregivers failing to connect to health system, Providers creating communication gap (Under Disconnect between caregivers and providers); Going through grief stages, Precarious fate of newborn (Under The bitter impact of maternal deaths) (See table 1)
Table 1: Theme, subtheme and categories from the interviews
Themes
|
Prepared for birth but not ready for complications
|
Disconnect between caregivers and providers
|
The bitter impact of maternal death
|
Subthemes
|
Basic birth preparation and care seeking routines
|
Inadequate resources for complications
|
Caregivers failing to connect to health system
|
Providers creating communication gap
|
Going through grief stages
|
Precarious fate of newborn
|
Categories
|
Perceiving birth prepared and seeking care early
Male involvement to provide financial support
Decision making shared with family members
Perceiving pregnancy and delivery as uneventful
|
Lacking funds for complications
Needing support for referral
|
Physically and emotionally separated from patient
Balancing between sick wife and other issues
Struggling to get information
Losing faith with health system
|
Perceived neglect from providers
Feeling of being ignored by provider
Providers seen as hiding their inadequacies
Provider perceived as too powerful
|
Disbelief/denial
Expressing anger and blame
Thinking on Bargaining
Feeling Depressed
Accepting
Tip of a hidden iceberg
|
Concerned about welfare of newborn baby and family
Burdening the grandmother
Relative contributing to care for baby
|
PREPARED FOR BIRTH BUT NOT READY FOR COMPLICATIONS
This theme explains dynamics in the family on issues of birth preparedness and health care seeking. Family members who were caring for the pregnant women explained their practice of birth preparation. However, once the pregnancy or birth process was complicated requiring referral and long hospital stay, the birth preparations were seen as inadequate. Occurrence of complications then stretched family resources to the limit and led to delays that contributed to deaths. They also explained how the decision to seek care was made within the family, involving different family members
Basic birth preparations and care seeking routines
Caregivers described how they prepared for birth by doing different things such as preparing money, transport, someone to escort the woman and some supplies (birth kit). Deliberate efforts were made by caregivers to find resources for birth preparation. Decision to seek care was also described to have been taken early, even though it was clear some decision-making processes created delays.
... I did some hustling and made about 300,000tshs and put it aside inorder to prepare and attend to health care during birth... (Husband of the deceased)
... first we did not have problems with transport, because he had prepared money (for transport) and motor cycle was available... (Aunt of the deceased)
The male partner was described both by men themselves (husbands) and other caregivers to play a key role in preparation of financial resources for birth. This was the case even when the man was away from home; he was called to arrange for transport and funds to seek care in health facilities. Men also provided funds to buy supplies and food for the patient in hospital and other caregivers who travelled with the pregnant woman.
...We called him, and we told him your wife has started labour, and we are getting prepared to take her to hospital: He called his friends and they brought a car, we seated in the car and we went to the hospital... (Grandmother of the deceased)
Decision making on when and where to seek care was made through consultations in the family, mostly to elderly women or men. Caregivers, especially men, had to ask women such as mothers or grandmother when labour started whether it was time to seek care. The consultations sometimes took time since they had to wait for someone to come from another village or patient travelling to that village for care or for consultation. These consultative plans are not done in advance and therefore caregivers did not seem to think this created delay to seek care.
... we lived in different places...when she started labour at night, her fiancé (male partner) came here to call me and told me I think labour has started. I went there and found its true labour has started... we took motor cycle to the hospital... (Aunt of the deceased)
Caregivers also explained how they thought that the pregnancy period of the deceased was uneventful since the pregnant woman did not experience any problems during pregnancy. Others explained that they did not expect problems since other pregnancies and deliveries had been uneventful. This influenced how they prepared for birth and where they decided to seek care.
... we went to the health centre... since she delivered without problems, even second pregnancy she delivered without problems, and the third pregnancy she said she delivered without problems... (Husband of the deceased)
Inadequate resources for complications
Even though family members (caregivers) explained that they did birth preparations, it was evident that their preparations were not adequate once complications started. When a pregnant woman needed to be referred from initial facility of care, family members struggled to come up with financial resources to support themselves and the patient. They had to borrow money, ask other relatives to contribute or sell their own property to meet the financial needs.
... But at the same time I had already asked for financial help, I was preparing to transfer the patient to another facility. I was supposed to get the money that day of Wednesday (the day she died)... (Husband of the deceased)
DISCONNECT BWETEEN CAREGIVERS AND PROVIDERS
This theme describes perceptions and experiences of caregivers on communication with health care providers (nurses and doctors) once the patient was admitted in the facility, especially in hospitals. Once the pregnant woman was admitted in the hospital, caregivers had problems accessing the patient or getting information about the issues that were happening. Caregivers made efforts to communicate with providers to get information about their loved one, but this was inadequately reciprocated by the health care providers. This created frustration among caregivers and led to efforts to change places of care.
Caregivers failing to connect to health system
Family members who cared for the deceased and travelled with her to the facility perceived the ward to be a barrier which separated them from their patient. This was coupled with little or lack of information from the health system about the patient.
... even if you go (to hospital) as a man you will end staying outside (the ward) inside there (you are not allowed)... you may depend on calling with phone. She will tell you if medicines have changed... (Husband of the deceased)
Caregivers also had to balance between taking care of the sick woman in hospital and other family issues such as work and children at home. This further complicated the communication with healthcare providers and affected their understanding of what was going on in the hospital.
.... so that day there was a heavy rain clouds, I was running to come home (from hospital) to wash clothes for the children… When I came here I washed and lost a lot of time... (Husband of the deceased)
Lack of communication led to the perception that the patient was not well cared for. There were some caregivers who expressed their dissatisfaction with care provided and lack of information to an extent of thinking and planning to seek care in other facilities or from traditional healers.
... Her husband arrived in the morning, so we said amah we have stayed here and she still coughing with difficulty in breathing with no treatment so it’s better we go home and try local herbs because we have stayed here with no medications...(Grandmother of the deceased)
Providers creating communication gap
Caregivers also thought that providers were not paying attention to them, and not providing information despite the seriousness of the patient’s illness. They felt they were excluded from the care of the woman once she was admitted in the hospital. This further created a communication gap, as caregivers were unaware of and were never told about the complications that had occurred to their loved one. Caregivers could not explain the causes of death since the healthcare providers never discussed with them what happened.
...that doctor was inside, he was busy... I did not know who to go to for explanations… the person involved (the doctor) was busy. That day ended without seeing the doctor (to ask for information)... (Husband of the deceased)
Caregivers also thought health care providers communicated less because they were hiding their shortcomings in care. They explained that health care providers were giving inconsistent information and coerced family members to provide false public statements about maternal deaths.
... the health providers of the hospital came and told me "we want you to go there (to a public meeting) and say this and this and this". All that they told me to say were not truthful to what happened... (Husband of the deceased)
There were also instances when health care providers were perceived as harsh and had too much power. The family members could not do anything to force the healthcare providers to give information. This made caregivers feel helpless in front of providers since they were unfriendly and unapproachable.
... My patient was not feeling well... the health provider is not friendly anymore to the patient. The health provider is like a ruler in the hospital... (Husband of the deceased)
THE BITTER IMPACT OF MATERNAL DEATH
The participants expressed how the death of the woman affected them personally and their families. This spanned from the emotional turmoil they went through to the welfare of the children, and effects on the partner and the newborns that were born alive.
Going through grief stages
Once the caregivers received the news of a maternal death they expressed emotional outbursts of disbelief and sadness. For some caregivers, the emotional reactions recurred during the interviews.
I had no means, I didn’t believe, I told her I don’t believe, she has died... (Aunt of the deceased)
Caregivers also expressed anger and thinking of someone to blame for the death. Some even had plans of seeking for justice by suing healthcare providers for negligence.
....whatever happens all my blames will go to the hospital. I don’t know anything about medicine but I will blame the hospital... (Husband of a deceased)
...I wanted to find a lawyer to help me get justice... (Husband of a deceased)
Others expressed how they could have changed the situation if they had made different decisions on places to seek care. Husbands especially described how they went through psychological depression as a result of losing their wives. Death was later accepted as God’s plan and family members thought asking for justice was never going to change what happened.
...I did not know how to get drunk but I started drinking alcohol at home. I was coming back at midnight or more, when I came at midnight I left at 0100hrs, I could not sleep... (Husband of a deceased)
Furthermore, caregivers thought the problem of maternal deaths is big and unknown to the general public and the government. Some explained that this was not the first time they personally experienced a maternal death and that things need to be done to change the situation.
...we have been touched a lot with this tragedy. In this tragedy there are a lot of us but we have no platform to speak... (Husband of the deceased)
Precarious fate of the newborn
Family members described that the death of the mother left a live newborn in an uncertain environment. Close caregivers such as husbands, mothers and grandmothers explained how immediately after the death the thought of the newborn’s welfare came into their minds.
...I said (name of the deceased) my child, this baby you are leaving to me, would I be able to handle it? She slept there at bed I said: Would I be able to handle this? If it was like clothes, I would say give me I go and you stay with the babies... (Mother of deceased)
Each family explained they had to come up with a plan to care for the newborn, but most of time the burden was left to the grandmother in the village. This responsibility of providing baby formula, clothes and healthcare was acknowledged to be difficult for the old women even if other family members contributed to the care whenever they could.
...try to imagine, grandmother in the village is only a small scale farmer, she does not know lactogen... Her daughter got pregnant but for hospital weakness she dies, will grandmother be able to care for the baby... (Husband of the deceased)