'I wanted to go, but they said wait': Mothers' bargaining power and strategies in care-seeking for ill newborns in Ethiopia

INTRODUCTION: To prevent the 2.6 million newborn deaths occurring worldwide every year, health system improvements and changes in care-taker behaviour are necessary. Mothers are commonly assumed to be of particular importance in care-seeking for ill babies; however, few studies have investigated their participation in these processes. This study explores mothers' roles in decision making and strategies in care-seeking for newborns falling ill in Ethiopia. METHODS: A qualitative study was conducted in Butajira, Ethiopia. Data were collected during the autumn of 2015 and comprised 41 interviews and seven focus group discussions. Participants included primary care-takers who had experienced recent newborn illness or death, health care workers and community members. Data were analysed using thematic analysis. RESULTS: Choices about whether, where and how to seek care for ill newborns were made through cooperation and negotiation among household members. Mothers were considered the ones that initially identified or recognised illness, but their actual opportunities to seek care were bounded by structural and cultural constraints. Mothers' limited bargaining power, contained by financial resources and gendered decision making, shaped their roles in care-seeking. We identified three strategies mothers took on in decision making for newborn illness: (a) acceptance and adaptation (to the lack of options), (b) negotiation and avoidance of advice from others, and (c) active care-seeking and opposition against the husband's or community's advice. CONCLUSION: While the literature on newborn health and parenting emphasizes the key role of mothers in care-seeking, their actual opportunities to seek care are shaped by factors commonly beyond their control. Efforts to promote care-seeking for ill children should recognise that mothers' capabilities to make decisions are embedded in gendered social processes and financial power structures. Thus, policies should not only target individual mothers, but the wider decision making group, including the head of households and extended family

What if the baby doesn't survive? Health-care decision making for ill newborns in Ethiopia

Despite efforts to improve access to and quality of care for newborns, the first month after birth remains the most dangerous period of life. Given high neonatal mortality in low-income countries, saving newborn lives is a key priority for global and national health policy agendas. However, little is known about how these policies resonate with local understandings, experiences and household priorities. In this qualitative study we examined families' decision making and health-care-seeking in Butajira, Ethiopia. Data were collected through observation in hospital, in-depth interviews (41), and focus group discussions (7) with family members, health-care workers, and community members (October–November 2015). Transcripts and field notes were analyzed inductively using qualitative content analysis. Findings indicate that newborn health was not always the family's priority. Local perceptions of newborns as not yet useful members of the household alongside costly health-care services delayed decision making and care-seeking. While sickness was recognized as dangerous for the ill newborn, seeking health-care could be harmful for the economic survival of the family. In a resource-constrained setting, families' focused on productive assets in order to minimize long-term risks, and waited before seeking newborn health-care services. Until the baby had survived the first vulnerable weeks and months of life, the unknown newborn was not yet seen as a social person by the community. Personhood evolved progressively as the baby became a part of the family. A newborn death was surrounded by silence, and families received minimal support from traditional financial associations, iddirs. Decisions regarding health-care were contingent upon families' understandings of newborns and their resource-constrained circumstances. Improving newborn health involves recognizing why families choose to (not) seek health-care, and their actual opportunities and constraints in making such decisions. The everyday realities of vulnerable newborns must be at the center of global and national policy discussions and local implementation

Selling my sheep to pay for medicines - household priorities and coping strategies in a setting without universal health coverage

BACKGROUND: The first month of life is the period with the highest risk of dying. Despite knowledge of effective interventions, newborn mortality is high and utilization of health care services remains low in Ethiopia. In settings without universal health coverage, the economy of a household is vulnerable to illness, and out-of-pocket payments may limit families' opportunities to seek health care for newborns. In this paper we explore intra-household resource allocation, focusing on how families prioritize newborn health versus other household needs and their coping strategies for managing these priorities. METHODS: A qualitative study was conducted in 2015 in Butajira, Ethiopia, comprising observation, semi-structured interviews, and focus group discussions with household members, health workers, and community members. Household members with hospitalized newborns or who had experienced neonatal death were primary informants. RESULTS: In this predominantly rural and poor district, households struggled to pay out-of-pocket for services such as admission, diagnostics, drugs, and transportation. When newborns fell ill, families made hard choices balancing concerns for newborn health and other household needs. The ability to seek care, obtain services, and follow medical advice depended on the social and economic assets of the household. It was common to borrow money from friends and family, or even to sell a sheep or the harvest, if necessary. In managing household priorities and high costs, families waited before seeking health care, or used cheaper traditional medicines. For poor families with no money or opportunity to borrow, it became impossible to follow medical advice or even seek care in the first place. This had fatal health consequences for the sick newborns. CONCLUSIONS: While improving neonatal health is prioritized at policy level in Ethiopia, poor households with sick neonates may prioritize differently. With limited money at hand and high direct health care costs, families balanced conflicting concerns to newborn health and family welfare. We argue that families should not be left in situations where they have to choose between survival of the newborn and economic ruin. Protection against out-of-pocket spending is key as Ethiopia moves towards universal health coverage. A necessary step is to provide prioritized newborn health care services free of charge

Caesarean Section among Referred and Self-Referred Birthing Women: A Cohort Study from a Tertiary Hospital, Northeastern Tanzania.

The inequity in emergency obstetric care access in Tanzania is unsatisfactory. Despite an existing national obstetric referral system, many birthing women bypass referring facilities and go directly to higher-level care centres. We wanted to compare Caesarean section (CS) rates among women formally referred to a tertiary care centre versus self-referred women, and to assess the effect of referral status on adverse outcomes after CS. We used data from 21,011 deliveries, drawn from the birth registry of a tertiary hospital in northeastern Tanzania, during 2000-07. Referral status was categorized as self-referred if the woman had bypassed or not accessed referral, or formally-referred if referred by a health worker. Because CS indications were insufficiently registered, we applied the Ten-Group Classification System to determine the CS rate by obstetric group and referral status. Associations between referral status and adverse outcomes after CS delivery were analysed using multiple regression models. Outcome measures were CS, maternal death, obstetric haemorrhage ≥ 750 mL, postpartum stay > 9 days, neonatal death, Apgar score < 7 at 5 min and neonatal ward transfer. Referral status contributed substantially to the CS rate, which was 55.0% in formally-referred and 26.9% in self-referred birthing women. In both groups, term nulliparous singleton cephalic pregnancies and women with previous scar(s) constituted two thirds of CS deliveries. Low Apgar score (adjusted OR 1.42, 95% CI 1.09-1.86) and neonatal ward transfer (adjusted OR 1.18, 95% CI 1.04-1.35) were significantly associated with formal referral. Early neonatal death rates after CS were 1.6% in babies of formally-referred versus 1.2% in babies of self-referred birthing women, a non-significant difference after adjusting for confounding factors (adjusted OR 1.37, 95% CI 0.87-2.16). Absolute neonatal death rates were > 2% after CS in breech, multiple gestation and preterm deliveries in both referral groups. Women referred for delivery had higher CS rates and poorer neonatal outcomes, suggesting that the formal referral system successfully identifies high-risk birth, although low volume suggests underutilization. High absolute rates of post-CS adverse outcomes among breech, multiple gestation and preterm deliveries suggest the need to target self-referred birthing women for earlier professional intrapartum care

Translating global recommendations on HIV and infant feeding to the local context: the development of culturally sensitive counselling tools in the Kilimanjaro Region, Tanzania

BACKGROUND: This paper describes the process used to develop an integrated set of culturally sensitive, evidence-based counselling tools (job aids) by using qualitative participatory research. The aim of the intervention was to contribute to improving infant feeding counselling services for HIV positive women in the Kilimanjaro Region of Tanzania. METHODS: Formative research using a combination of qualitative methods preceded the development of the intervention and mapped existing practices, perceptions and attitudes towards HIV and infant feeding (HIV/IF) among mothers, counsellors and community members. Intervention Mapping (IM) protocol guided the development of the overall intervention strategy. Theories of behaviour change, a review of the international HIV/IF guidelines and formative research findings contributed to the definition of performance and learning objectives. Key communication messages and colourful graphic illustrations related to infant feeding in the context of HIV were then developed and/or adapted from existing generic materials. Draft materials were field tested with intended audiences and subjected to stakeholder technical review. RESULTS: An integrated set of infant feeding counselling tools, referred to as 'job aids', was developed and included brochures on feeding methods that were found to be socially and culturally acceptable, a Question and Answer Guide for counsellors, a counselling card on the risk of transmission of HIV, and an infant feeding toolbox for demonstration. Each brochure describes the steps to ensure safer infant feeding using simple language and images based on local ideas and resources. The brochures are meant to serve as both a reference material during infant feeding counselling in the ongoing prevention of mother to child transmission (pMTCT) of HIV programme and as take home material for the mother. CONCLUSION: The study underscores the importance of formative research and a systematic theory based approach to developing an intervention aimed at improving counselling and changing customary feeding practices. The identification of perceived barriers and facilitators for change contributed to developing the key counselling messages and graphics, reflecting the socio-economic reality, cultural beliefs and norms of mothers and their significant others

Infant feeding counselling in Uganda in a changing environment with focus on the general population and HIV-positive mothers - a mixed method approach

<p>Abstract</p> <p>Background</p> <p>Health workers' counselling practices are essential to improve infant feeding practices. This paper will assess how infant feeding counselling was done and experienced by counsellors and mothers in Eastern Uganda in the context of previous guidelines. This has implications for implementation of the new infant feeding guidelines from 2009.</p> <p>Methods</p> <p>This paper combines qualitative and quantitative data from Mbale District in Eastern Uganda. Data was collected from 2003 to 2005 in a mixed methods approach. This includes: key-informant interviews among eighteen health workers in the public hospital, health clinics and non-governmental organisations working with people living with HIV, fifteen focus group discussions in the general population and among clients from an HIV clinic, two cross-sectional surveys including 727 mothers from the general population and 235 HIV-positive mothers.</p> <p>Results</p> <p>The counselling sessions were often improvised. Health workers frequently had pragmatic approaches to infant feeding as many clients struggled with poverty, stigma and non-disclosure of HIV. The feasibility of the infant feeding recommendations was perceived as challenging among health workers, both for HIV-positive mothers and in the general population. Group counselling with large groups was common in the public health service. Some extra infant feeding teaching capacities were mobilised for care-takers of undernourished children. A tendency to simplify messages giving one-sided information was seen. Different health workers presented contradicting simplified perspectives in some cases. Outdated training was a common concern with many health workers not being given courses or seminars on infant feeding since professional graduation. Other problems were minimal staffing, lack of resources, and programs being started and subsequently stopped abruptly. Many of the HIV-counsellors in the non-governmental organisations got extended training in counselling which seemed to be beneficial.</p> <p>Conclusions</p> <p>Health workers were faced with challenges related to workload, resources, scientific updating, and also a need to adjust to frequent changes in programs, recommendations and guidelines. The clients were faced with difficult choices, poverty, lack of education and stigma. Feasibility of the recommendations was a major concern. Systematic approaches to update health workers should be a priority.</p

"I am nothing": experiences of loss among women suffering from severe birth injuries in Tanzania

\ud Despite the increased attention on maternal mortality during recent decades, which has resulted in maternal health being defined as a Millennium Development Goal (MDG), the disability and suffering from obstetric fistula remains a neglected issue in global health. Continuous leaking of urine and the physical, emotional and social suffering associated with it, has a profound impact on women's quality of life. This study seeks to explore the physical, cultural and psychological dimensions of living with obstetric fistula, and demonstrate how these experiences shape the identities of women affected by the condition. A cross-sectional study with qualitative and quantitative components was used to explore the experiences of Tanzanian women living with obstetric fistula and those of their husbands. The study was conducted at the Comprehensive Community Based Rehabilitation Tanzania hospital in Dar es Salaam, Bugando Medical Centre in Mwanza, and Mpwapwa district, in Dodoma region. Conveniently selected samples of 16 women were interviewed, and 151 additional women responded to a questionnaire. In addition, 12 women affected by obstetric fistula and six husbands of these affected women participated in a focus group discussions. Data were analysed using content data analysis framework and statistical package for the social sciences (SPSS) version 15 for Microsoft windows. The study revealed a deep sense of loss. Loss of body control, loss of the social roles as women and wives, loss of integration in social life, and loss of dignity and self-worth were located at the core of these experiences. The women living with obstetric fistula experience a deep sense of loss that had negative impact on their identity and quality of life. Acknowledging affected women's real-life experiences is important in order to understand the occurrence and management of obstetric fistula, as well as prospects after treatment. This knowledge will help to improve women's sense of self-worth and maintain their identity as women, wives, friends and community members. Educational programmes to empower women socially and economically and counselling of families of women living with obstetric fistula may help these women receive medical and social support that is necessary.\u

Action to protect the independence and integrity of global health research

Storeng KT, Abimbola S, Balabanova D, et al. Action to protect the independence and integrity of global health research. BMJ GLOBAL HEALTH. 2019;4(3): e001746