Socio-economic correlates of bereavement among women - Examining the differentials on social axes

Introduction

Loss of pregnancy and newborn inflicts sorrow and bereavement to the family and more on women. Family and community play a significant role in coping. Parity of pregnancy loss is important in governing the role of family and community in creating a coping mechanism. The present review endeavours to understand the situation of women who experience loss of child due to pregnancy loss or perinatal and infant death. It attempts to analyze the trends and patterns which evolve due to the social axes on which women are located and to provide an in-depth account of the local setting and contextualize it on infant and child mortality. It uses quantitative and qualitative methods to understand the factors attributing to the differential experiences of women belonging to different social groups in accessing services which prevent loss of foetus and child. How relevant is social background in influencing the bereavement experiences? Do demographic factors such as age and parity interplay with sociocultural factors to accentuate or aggravate bereavement? How does individual, family and community on one hand, and State agencies on the other, evolve the coping mechanism? Is there any State mechanism to address coping with bereavement? Secondary data sources have been analysed to find an answer which include National Family Health Surveys (NFHS-1, 2, 3, 4)1234 and a Multi-State study on social exclusion in multiple spheres undertaken by the Indian Institute of Dalit Studies (IIDS), New Delhi (unpublished data).

Conceptual framework

The emphasis on maternal and child health has been to ensure uncomplicated pregnancy and safe delivery. Women from the vulnerable groups are often unable to access the maternal and child health services. Sensitivity towards the vulnerable women, availability of providers and services, will enhance access. Institutions have to consciously work towards creating enabling environment for utilization of maternal and child health services. Enabling environment for vulnerable populations needs to be designed through policies and programmes and infusing sensitivity among the providers and co-users of the resources and services15.

Inequalities in child health vary across socio-economic groups in terms of health outcomes, access to health services and utilization of health services. Disparities exist in utilization of services as much as the differential pace of economic and social development and distribution of the benefits of development along with the inadequacy of the public healthcare systems to deliver equitable health services16. Thus, the argument that addressing economic disparities will eventually take care of social inequalities needs to be revisited. There is an inherent discord in this framework. Gender and economic factors are amply illustrated and argued. Caste-based determinants and consequences of deprivation and denial are not adequately illustrated in the context of maternal and child health and well-being. Caste-based predictors have mostly been seen from the lens of socio-economic indicators. Emphasis has been on income disparities while social identities have remained marginalized. Access, availability and perception of self lead to utilization of services. Access translates into utilization through the web of adequate resources, conducive policy regime and providers’ sensitivity to social heterogeneity as a factor of differential access; and perception of self16. Access is the function of awareness, information, knowledge and encouraging setting to use them and proclivity to overcome inhibitions and impediments for interacting with providers and institutions. Lack of appropriate opportunities and mechanisms to access opportunities for education and income-generating activities result in poor living conditions including housing, health, nutrition, lifestyle and social environment. Availability of resources is dependent on the procurement chain. Policy environment, market and marketing, media and advertisement, motivation and buying capacity of the users collectively impact the demand-supply cycle of resources and thus their availability. How an individual creates self-image has elements of the image created (of the individual) by the others. Thus, created positive images enhance confidence and check inhibitions. Thus, utilization of resources and services is determined by three factors - access, availability and perception of self16 (Figure).

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Factors affecting pregnancy loss and bereavement. Source: Refs 151630.

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The bereavement caused by early deaths such as neonatal deaths and stillbirths are embedded in poor maternal and child health and inadequate care during pregnancy, child birth and post-pregnancy, as much as it is in the differential access to services. Management of complications during pregnancy and delivery; hygiene during delivery and the first critical hours after birth and newborn care require appropriate skilled management. Access to these services is differently manifested across social groups. Recurrent early deaths and foetal loss often lead to stigmatizing of women and open the choice of surrogacy and other form of assisted reproductive technology.

Concern for early deaths

Pregnancies and childbearing are affected by gender sensitivity. Status of women, their nutritional status and age at the time of conception are crucial elements. Frequent, too early and too late pregnancies; poor cord care; discarding colostrum and feeding other food are some sociocultural factors which influence early deaths3. Neonatal deaths are caused mostly when the babies are severely malformed, born prematurely and suffer from obstetric complications before or during birth17. They have difficulty adapting to extrauterine life, and harmful practices after birth often contribute to infections. All this is closely related to the impoverished status of the mother.

Low birth weight also contributes to neonatal deaths. Nearly 15 per cent of the newborn infants weigh <2500 g globally. While in the developed countries, only 6 per cent weigh <2500 g; in some parts of the world, this proportion is more than 30 per cent17. Weight at birth, complications at birth and neonatal health are an outcome of maternal health and nutrition at conception and during pregnancy. If infections such as malaria and syphilis are contracted during pregnancy, then adverse pregnancy outcomes like mortality are observed18. The stillbirths are not only a demographic event but a socioemotional incidence causing bereavement for the mother and the family. Therefore, they deserve to be noticed and attended by the society and the healthcare system particularly in developing countries1920.

The perinatal mortality is a strong indicator of the health status of pregnant women, mothers and newborns. Perinatal mortality reflects on maternal health and nutrition and the quality of obstetric and paediatric care available21. Perinatal mortality levels are used by the policymakers to recognize the problems, track the trends and disparities, which can be used for assessing changes in large public health environment. Social and cultural factors influence parity and the outcome of a birth. However, as societal norms change with development and technological advancement, hope of ‘good life’ and ‘medical care’ reduces parity and replaces home deliveries. However, access to the ‘good medical care’ is more often than not, restricted to some as evident in the differential health outcomes across social groups1822. Advancement in reproductive health, quality of obstetric and neonatal facilities and upward economic gradient can yield reduction in neonatal deaths and stillbirths23.

Maternal, perinatal and neonatal survival requires appropriate technologies to address critical medical problems. It also requires a programme that attends to the healthcare needs of the woman and her baby throughout pregnancy, childbirth and the postpartum period. This mandate needs to be executed at the primary care level for all pregnant women and at higher levels of secondary and tertiary care for women and babies with complications without any form of discrimination. This will address the needs of nearly half of the world's women who still give birth at home2425 in the absence of any skilled care provider26. There are also structural deficiencies in providing safe childbirth and newborn care. The absence of healthcare providers, outdated knowledge and inadequate skills, lack of essential medicines, supplies and equipment, overcrowding and inadequate hygiene are to name a few27.

Social groups and early mortality differentials

Understanding the differentials across social groups depends largely on reliable data on relevant indicators. Perinatal and neonatal mortality data can be obtained from vital registration, sample registration or community level microstudies. Reliable vital registration is available for only about one-third of the world's population28. At least 85 per cent reporting of both completeness and coverage of mortality is considered as reliable by the WHO. The United Nations, however, requires 90 per cent or more completeness of adult and infant mortality for considering the data reliable27. Surveys are the main source of data for developing countries. The NFHS data suggest that like most other indicators of social and economic well-being, neonatal and infant mortality is more among the scheduled caste (SC) as compared to the high caste (HC) denoted as ‘Others’ administratively, despite having improved over the time since NFHS-1 was conducted during 1992-93 to NFHS-4 during 2015-16 (Table I). While there is a consistent improvement in early deaths from 1992 to 2016, the gap between the SC and HC continues to persist.

Care for the mother and newborn

Available and accessible care for the mother and the newborn are very important factors which influence pregnancy loss and early deaths. Given the differentials in the socio-economic status and access to care, health outcomes vary across social groups. In a multi-state study (unpublished data) to examine issues of social exclusion in multiple spheres, disparity in healthcare given to the newborn was evident. It varied across social groups. A broad disaggregation as SCs and HCs of the study population was used for the analysis.

A large proportion of perinatal and neonatal deaths can be averted if appropriate and adequate care, both medical and health, can be made available for access2628. More than 49 per cent newborn among SC need to be given medical care as compared to 43 per cent among HC(unpublished data). Thus, there is a likelihood that due to poor economic conditions leading to poor health, need to attend to the new mothers from the SC was higher than those from the HC. While not much difference is evident in the care given before discharge, after discharge, there is a reversal of share of medical care in favour of the HC 95 per cent as against 93 per cent for SC(unpublished data). Although postnatal care is important for both the social groups, HC received better service delivery than that of their SC counterparts(unpublished data). Similar differential was visible for immunization also (unpublished data). Being a universal programme, all children should receive the benefit equally. However, the evident differential point towards factors such as providers’ sensitivity to reach out to the underserved is important. A shift in favour of the HC is likely to originate due to the stereotypes based on social identity. The decrease in the share of the children immunized as the age advances is also reflective of the general disadvantage experienced by both SC as well as HC. However, the shares consistently remaining lesser for the SC than HC suggest specific disadvantage to this group in accessing immunization services (unpublished data). Fewer children among SC as compared to HC have been immunized for all the vaccines and oral intakes - BCG, DPT, Polio, MMR, measles and vitamin A. Immunization services provided across social group reveals that there is a variation between SC and HC (unpublished data).

Among the service providers, ANM is responsible for immunization and dissemination of information about immunization. Most of the BCG is being provided by ANM. The gap, however, between SC and HC was 10 per cent points. The doctors in the public and private health facilities; nurses; paramedical staff like ANM, pharmacist, lady health worker and the primary level workers such as anganwadi worker (AWW) and ASHA - all of them have provided the immunization services to a comparatively larger proportion of HC as compared to SC except for ANM who have provided these services to 10 per cent more SC (82.71%) than HC (72.71%) (unpublished data). A plausible explanation could be that they targeted to complete vis-à -vis children from specific social groups; SC children were less accessed for this compared to HC, and the latter might have access to other sources than the ANM. Many a times, the services cannot be used as well as provided because of various reasons ranging from cost, customs and time to fear of vaccination. Noteworthy is the fact that the most reasons affect both the groups with almost similar intensity. Despite that, the gap was evident in favour of the HC.

An enquiry was made in same villages of western India. This reflected that services were provided but apathetically to 37 per cent SC as against 29 per cent HC. Furthermore, more than one-fourth of the former had to wait before any service was provided to them as compared to about 22 per cent HC. Thus, it was found that more number of SC respondents were either served apathetically or served after long waiting than that of their HC counterparts. More than 19 per cent HC respondents felt dissatisfied due to the absence of the service provider and only 13 per cent SC respondents have stated it as the main reason for dissatisfaction. It was noted that 9.68 per cent HC respondents stated that the service was available but not provided while only 6.21 per cent SC respondents gave this cause(unpublished data).

Some of these issues have been corroborated by the large-scale data such as the NFHS. The financial hindrance affected access of more than 20 per cent among the SC and about 13 per cent among the HC. When the provider was not available, about 27 per cent SC were affected in terms of getting the services, while this share was about eight per cent among the HC. Similarly, distance obstructed 24 per cent SC and about 18 per cent of HC in accessing the services (Table II). It was of concern to note that these problems were affecting more women in 2015-2016 as compared to 2005-2006.

On the basis of the empirical evidences, availability of care was dependent on the presence of health personnel and the supply of medicines and equipment for diagnostic tests etc. Distance and infrastructure are also important. These, however, are the factors which affect all. There are specific factors which are embedded in the prejudices and stereotypes associated with the understanding of caste. A typology of issues and the processes evolving differential bereavement have been proposed in Table III.

Summing up

Perinatal loss due to miscarriage, ectopic pregnancy, stillbirth and neonatal death is an experience of grief for couples and their family members. Perinatal loss causes grief which affects everyone associated with the loss. Acceptance and response to such loss reflect evident gender differences. The studies related to expression of grief following pregnancy loss was reviewed to understand the factors affecting experience of grief. It was found that most studies were done in developed countries. A large percentage of women experienced grief at loss of foetus, infant and young children. Very often, they felt guilty and depressed. Women with no living children were more predisposed to severe grief reaction.

Barriers to access to healthcare services were apparent in refusal to observe certain norms considered compulsory in providing care but were often infringed while providing care to the care seekers from vulnerable communities. The health camps for immunization, especially when located in places inaccessible to dalits; and when information was disseminated with prejudice, led to differentials access. The gap in access between SC and HC women was the outcome of prejudices which excluded SC women partially or completed from access to maternal and child health services. Therefore, sensitivity of the service providers and their concerns for the vulnerable populations was relevant in ensuring utilization of services. The policy, organizational structures and the service providers should be sensitive to the concerns of the vulnerable populations. If a provider does not inform about a certain scheme launched for the vulnerable groups, barriers such as inhibitions aggravate their inability to utilize the scheme. On the contrary, a sensitive provider is likely to inform about the schemes and programmes without any discrimination, creating the enabling environment for accessing the schemes and programmes for utilization and accruing benefits and overcoming the inhibitions. This sensitivity is likely to arise out of the providers’ alignment with biases and stereotypes related to the vulnerable populations. Therefore, mapping of diverse populations in understanding their experience of loss, coping mechanism and interventions following a loss is imperative.