Stillbirth is one of the most neglected maternal and child health problems in low and middle-income countries, including India. Even the states that perform well on healthcare provide little support to women who have had stillbirths, as our recent study in Tamil Nadu shows. Healthcare facilities and workers are overburdened, leaving women without sensitive care and neglecting their psychological recovery.
Stillbirth is defined as the birth of a baby without any signs of life at or after 28 weeks of gestation. An estimated 2.6 million stillbirths occur globally every year and about 98% of them are in the low and middle-income countries. Women who suffer stillbirths and their families suffer several psychosocial morbidities including grief, guilt, confusion, shock, social stigma and discrimination. Several previous studies have shown that insensitive health systems and health providers worsen the psycho-social turmoil that a the bereaved mother and her family find themselves in.
Tamil Nadu has one of the best health systems in India with a low infant mortality rate (death of infants before reaching their first birthday) of about 20 per 1,000 live births. But, given its model health facilities, it still has a incidence of stillbirths at 6.8 per 1,000 live births in the year 2014. The stillbirth rate across India is much higher at about 20 per 1,000 live birth, the highest absolute numbers of stillbirth in the world.
The exact cause of stillbirth in a large proportion of cases is unknown, occuring in healthy mothers with no discernible cause. In about 40% of cases known causes include maternal diseases like diabetes, hypertension, separation of placenta before delivery, congenital malformations of the foetus, malnutrition of the mother including anemia, infections such as malaria during pregnancy and accidents related to the umbilical cord.
We conducted a study to understand the social, emotional and psychological impact of stillbirths on women and their families, with the specific intention to inform policy to appropriately address these women’s psychosocial needs.
Using qualitative research methods, we interviewed eight women in Chennai city and from villages nearby who had suffered stillbirths between January 2016 and January 2017. The interviews with the women and their families were based on an open-ended checklist that allowed for in-depth exploration of social, emotional and psychological problems. In addition, we also conducted interviews with village health workers and primary health centre staff nurses. The intention of a qualitative study is to understand and interpret the meaning behind the experiences and therefore a small sample of selected respondents provide rich information that is sufficient to understand the phenomenon under study.
The study highlighted some important dimensions of the psycho-social experiences of women who have had stillbirths and the health system’s responses. The mothers felt that healthcare providers were insensitive to their bereavement, disinterested, non-compassionate and defensive. They also said the healthcare providers tended to trivialise the bereavement, treating the stillbirth as a mere statistic. They would not talk with mothers about what happened, and they would not acknowledge that the loss was significant.
The mothers and families did not anticipate the stillbirth, and felt that doctors and nurses did not explain the course of events to them. They were left frantically trying to understand what had happened. Mothers and their families typically went through all five stages of grief namely, denial, anger, bargaining, depression and acceptance. The mothers reported feeling immense guilt – that they had failed as women – and the healthcare providers’ attitudes worsened this guilt.
Wrong company
Women who suffered stillbirth were admitted to either the general postnatal ward of the hospital or the antenatal ward – both places of happiness and celebration either due to the birth of a normal child or the anticipation of one. Women who had stillbirths felt extremely depressed and out of place here. The main reason why mothers of stillborn babies are placed in the general postnatal ward or antenatal ward is because public hospitals are overcrowded and have too few beds. Moreover, providers can give her care more easily if she is in the main ward. However, this grossly aggravates their distress.
Many healthcare providers believed that the women should not be told about the stillbirth immediately after the delivery, as they may not be able to tolerate the shock. They also felt that the women should not be shown the dead baby. There are varied cultural practices in relation to mourning the death of a stillborn baby. In some cultures, the baby is not given the usual final rites and is not treated as a person. In many cultures there is a truncated period of grief or mourning, if any, for a stillborn baby. This severely compromises the healthy psychological process of grieving for the mother and the family.
Our study also showed that women coped with the event of stillbirth through immersing themselves in work, isolating themselves from friends and family, expressing their maternal love to other children in the family and being more religious than they were earlier.
Overworked health workers
Community health workers, who usually provide care for pregnant women and children, complained that they are overworked and burdened with so many programs that they are unable to provide effective antenatal care for all mothers. They said some women, like migrant women and women in urban slums, get left out of the safety net of antenatal care. Often, it is these women who suffer from serious complications of pregnancy.
Community health workers felt that they are often caught in the crossfire between families who blame them for the stillbirth and the health system superiors to whom they are accountable for the stillbirths. They felt that there is an immediate need to address the deficit of community health workers across the country.
The findings of the study reveal some important systemic changes that are required to improve the quality of care provided to mothers who suffer stillbirths, as well as to their families. Some states like Kerala, Tamil Nadu, Maharashtra that have better health indicators have substantially increased coverage and outreach of many of their healthcare services and now it is time to focus on improving quality of services.
The first step to improving the quality of care is to provide sensitisation and capacity building for all doctors, nurses, midwives and staff to understand the social, emotional and psychological experiences of mothers who suffer stillbirths. Mothers who suffer stillbirths should be provided a separate ward or a private room in hospitals to prevent aggravation of their grief by encountering other mothers and their babies.
Every maternal and child health facility should have the services of a psychologist to counsel the mother and the family to effectively handle their grief. Religious services such as temple priest and chaplaincy services should be made available. Long term follow-up of these mothers should involve psychotherapy, and counselling services. They should receive reproductive rehabilitation services, which include pre-conception counselling, genetic testing and counselling where appropriate, and care for the next pregnancy. They should also receive contraceptive counselling to effectively space the next pregnancy.
Capacity building for all doctors, nurses and healthcare providers at all levels of health facilities in the state should focus on early diagnosis of stillbirths, appropriate obstetric management, and empathetic care. Health care providers at all levels should be trained to communicate effectively about stillbirths to the parents and the family. Public awareness about stillbirth, its causes, its prevention and its consequences must be generated through mass media and social media campaigns.
The overall quality of services should be improved to improve public trust of the health system.
Gopichandran is assistant professor at ESIC Medical College & PGIMSR, Chennai. Subramaniam is assistant professor at Madras Medical College, Chennai. Kalsingh is a consultant with the National Health Mission in Tamil Nadu.