Experiences of Fetal or Infant Loss among Tanzanian Women in HIV Care

Abstract

This study examined the impact of fetal or infant loss on HIV care engagement. We conducted semi-structured interviews with 15 HIV-infected women who experienced fetal or infant loss while enrolled in prevention of mother-to-child transmission (PMTCT) services in Tanzania. Women attributed the loss to delays in receiving healthcare. Provider communication about the cause of the loss was poor, and women reported substantial distress related to the loss. One-fifth reported gaps in HIV care or disengagement from care following their loss. Loss of a fetus or infant is not uncommon in HIV endemic settings, and should be integrated into PMTCT guidelines.

Introduction

Prevention of mother-to-child transmission of HIV (PMTCT) services are a vital entry point for HIV testing, prevention, and treatment in many nations. Under the World Health Organization’s Option B+ protocol, all pregnant women initiate lifelong antiretroviral therapy (ART) during pregnancy, regardless of clinical indicators (WHO, 2013). Early engagement and consistent adherence to ART during pregnancy, childbirth and the breastfeeding period can prevent HIV transmission to the child (Abimpaye et al., 2018) and promote the mother’s long-term health (Kamuyango, Hirschhorn, Wang, Jansen, & Hoffman, 2014; Miller, Muyindike, Matthews, Kanyesigye, & Siedner, 2017).

Infant mortality is a top priority of the United Nation’s Sustainable Development Goals and a critical area of concern in many low- and middle-income countries (Lawn, Cousens, & Zupan, 2005; Rosa, 2017). In Tanzania, 40 per 1000 infants will die in the first year of life, as compared to the lowest global rates of 2 per 1000 (World Bank, 2017). Although ART use has been largely determined to be safe for pregnant women, exposure to HIV may still increase the risk of fetal and infant mortality due to prenatal alterations in the mother’s immune function, exposure to maternal HIV-related infections, reductions in breastfeeding, and avoidance or neglect of healthcare due to HIV (Locks et al., 2017).

Fetal and infant loss can have a devastating impact on a woman’s mental health and overall wellbeing (Cacciatore, Frøen, & Killian, 2013), and may erode her trust in the healthcare system (Kavanaugh & Hershberger, 2005). HIV-infected women may face additional distress due to fears that their HIV infection contributed to the loss of their child. Taken together, these factors may have a profound influence on the woman’s long-term HIV care engagement (Fayorsey et al., 2016).

Understanding the perspectives of women who experience a fetal/infant loss may provide new insight into the services needed to promote effective coping and long-term health. The purpose of this study is to describe miscarriage, stillbirth, and infant deaths among a cohort of women in PMTCT care in Tanzania. Through qualitative interviews, we explore the circumstances of fetal and infant loss and the subsequent impact on well-being.

Methods

This study used data from a cohort of 200 women enrolled in PMTCT care from nine clinics in the Kilimanjaro region of Tanzania. Cohort participants completed face-to-face surveys during pregnancy, after childbirth, and at 3 and 6 months postpartum. Women who reported a miscarriage, stillbirth, or infant death within 3 months postpartum were asked to complete a semi-structured interview to discuss the loss. Participants were compensated 5,000 Tshs (approximately $2 U.S.) for travel-related costs. Data collection occurred between December 2016 and November 2017. The reporting of these data follow STROBE guidelines for observational studies (von Elm et al., 2008).

Procedures

Semi-structured interviews were scheduled one to six months after the loss occurred. Interviews took approximately 20 minutes to complete and were administered in Swahili by trained study nurses. The interview guide was informed by formative data collected from providers and patients, previous literature, and research team members’ clinical experiences in obstetric practice and HIV care. The guide explored the circumstances of the loss, interactions with the healthcare system surrounding the event, communication on the cause of death, grieving and coping strategies, and perceived effects of the loss on HIV care engagement. Specific prompts/questions included, “Please tell me about how your child died,” “What did the doctor or nurse tell you about the reason(s) for your child’s death?”, “How are you dealing with the loss of your child?”, and “How has the loss of your child impacted your HIV care or your ability to take medication?”

Data Analysis

Data analysis was conducted using principles of thematic analysis (Guest, MacQueen, & Namey, 2012) and consensual qualitative research (Hill et al., 2005; Hill, Thompson, & Williams, 1997). Four team members independently reviewed transcripts to generate preliminary themes, and team members reached consensus on the coding structure. The final code structure was applied to the transcript and illustrative quotes were extracted to represent core ideas within each theme. At each step, team members returned to the original data to confirm the coding structure. Disagreements were openly discussed until consensus was reached.

Results

Description of the sample

From the cohort of 200 women, 15 women reported 16 fetal or infant deaths, including one participant who lost both infants from a twin pregnancy. The 15 participants (Table 1) ranged from 20 to 44 years old, with median age of 25. Most women (n=11, 73%) had at least one previous pregnancy. Seven women were diagnosed with HIV during the current pregnancy, while the remaining eight were diagnosed between one and 13 years prior (mean=8 years). Six of the losses occurred during pregnancy (after 24 weeks gestation); six occurred during the neonatal period (birth to 1 month of age), and four occurred in infancy (1 to 3 months of age). Due to the challenges of measuring socioeconomic status (SES) based on household income in the Tanzanian context, we used four items exploring food insecurity as a proxy for SES. One-third of participants (n=5) endorsed at least one item indicating they experienced food insecurity in the past month, including being unable to feed their family, missing meals, not eating for a whole day, or cutting the size of meals due to lack of money.

Table 1.

Demographics, HIV diagnosis history, and Obstetric history for Study women (n=15)

Variable	n (%)	Variable	n (%)
Age in years, median	25	Type of pregnancy
Range (20–44)		Singleton	14 (93.3)
Relationship status		Twin	1(6.7)
Married	7 (46.7)	Living children, median	2
Single, not in a relationship	3 (20.0)	Range (1–4)
In a relationship, but not married	3 (20.0)	Timing of perinatal/infant death*
Separated from spouse/Divorced	2 (13.3)	Fetal stage (Before birth)	6 (37.5)
Education		Neonatal (Birth to 1 mo.)	6 (37.5)
Primary	7 (46.7)	Infant stage (1 to 3 mo.)	4 (25.0)
Secondary	5 (33.3)	Place of delivery
Tertiary	3 (20.0)	Home	1 (6.7)
Household food insecurity (past month)		Health center	2 (13.3)
Food secure	10 (66.7)	District hospital	2 (13.3)
Food insecure	5 (33.3)	Regional/Referral hospital	4 (26.7)
HIV care engagement at 6 months postpartum		Zonal/consultant hospital	6 (40.0)
		Reasons for fetal/infant death*
In care	13 (86.7)	Late fetal death/Stillbirth	5 (31.3)
Stopped	1 (6.6)	Infectious cause	3 (18.8)
Missing	1 (6.6)	Prematurity	2 (12.5)
First pregnancy		Birth asphyxia	2 (12.5)
Yes	4 (26.7)	Anemia	1 (6.2)
No	11 (73.3)	Congenital abnormality	1 (6.2)
Number of pregnancies, median	2	Sudden infant death	1 (6.2)
Range (1–5)		Unknown	1 (6.2)

^*n=16 because of two infants lost from a twin pregnancy

Context of fetal or infant loss

Four qualitative themes were identified regarding the context of fetal or infant loss: delays in care, provider communication, coping following the loss, and impact on HIV care engagement. Table 2 reports results with illustrative core ideas.

Table 2.

Qualitative analysis for women response regarding loss of fetus/infant during PMTCT care

Main themes and sub-themes	Frequency (n=15)	Illustrative core idea(s)
Critical delays in care leading to fetal / infant loss
Patient delays in seeking care	2	“I felt weight on the vagina, and I was very tired. I didn’t feel fetal movement for the whole day, day and night. I went to clinic [the following day] and I told a nurse how I felt.”
Provider delays in providing proper clinical decision making	3	“At the clinic they said they couldn’t hear well the fetal heartbeats and also they didn’t know I have twins, until I got to the hospital for delivery.”
Health system delays in facilitating emergency care or transfer	3	“I think the delay in caesarian-section is what caused my baby to drink that water [amniotic fluid].”
Healthcare provider-patient communication
Insufficient information was given to the patient.	9	“The nurse did not tell me the cause of death.” “The doctor told me I had to leave the hospital, even though I was in pain. I was not given any information about my diagnosis or condition. I later delivered at home and the baby died.”
Patient received important information and/or advice from the doctor and developed an understanding of her child’s death.	7	“The doctors told me that cause of death was immaturity of lungs.” “No, there are no any other doubts about death of the baby; it was only due to the heart problem.”
Mothers dealing with and coping with fetal or infant loss
Feelings of sadness, memories, crying, hopelessness	10	“I was deeply hurt, and I cry when I remember.”
Faith-based acceptance and coping. Death of child was part of God’s plan, strength and acceptance from God, thanking God	10	“I am depending on God and I have the ability to accept and endure.” “I have to accept as that is God’s will.”
Support from others: partner, family, friends, clinic staff	7	“My family, especially my mother, play a great role to comfort and encourage me.”
Other strategies for coping	4	“I need to have another baby.”
Signs of depression, suicidal thoughts	3	“I am no longer motivated after the death of my child”
Impact of fetal/infant loss on attitudes toward HIV care
Continuing treatment as usual, not discouraged or deterred, committed to lifelong treatment	12	“This has not discouraged me from taking my medication. Although sometimes I feel worthless, but I have not stopped taking my medicines.”
Death of child created doubt, ambivalence, or challenge in continuing treatment	3	“I feel like going there will remind me a lot, but I will try and go back for HIV care.” “I am still taking my drugs but the death of my child has demoralized me.”

Critical delays in care contributing to fetal/infant loss.

Participants frequently attributed the fetal or infant loss to delays in care in three areas: patient delays in initially seeking care, provider delays in providing critical health services, and health system delays in facilitating transfer to tertiary facilities. Of note, women did not cite their HIV as a reason for delays in care.

In some instances, women acknowledged they had delayed seeking medical attention after noticing something was wrong: “Suddenly, I couldn’t feel fetal movement for the whole day (Saturday), the following day also there was no fetal movement; therefore, I went to hospital on Monday…(but) it had already died” (Fetal loss; 40 weeks gestation).

Several women noted they sought medical attention after experiencing symptoms, but were not attended to in a timely manner. One participant reported: “For three days before delivery, it was difficult to hear the fetal heartbeat…every nurse who came in for the new shift checked on me and said they couldn’t detect a fetal heartbeat…the baby was [stillborn]” (Fetal loss; 40 weeks gestation).

Women also noted delays in the health care system that prevented a timely transfer to tertiary care for emergent intervention. One woman noticed her infant having convulsions at night and took the baby to the hospital, but had to wait for the doctor to arrive from home. It took one day before her baby was evaluated and transferred to a tertiary hospital for further management (Infant loss; 6 weeks).

Healthcare provider-patient communication.

About half of the women reported receiving valuable guidance from healthcare providers when they initially sought help, which facilitated their decision about seeking care: “I called one of the doctors at the local health center and she advised me to bring the baby to the hospital. Upon arrival my child was admitted” (Infant loss; 2 days).

However, most women stated the cause of death was not communicated to them or they received insufficient information to understand the cause. One woman shared: “They didn’t tell me. They did not know what is the cause of death; they were confused with the situation” (Infant loss; 2 days). No participants reported they were told their HIV infection was related to the death.

Mothers coping with fetal or child loss.

Feelings of grief and sadness were common, and a small number of women (n=3, 20%) reported severe challenges in coping with the loss that included suicidal thoughts or other signs of depression. Their loss decreased hope and triggered internalized HIV-related stigma: “Sometimes I feel worthless and even think of killing myself. When I remember that I am HIV positive, I have a very hard time” (Infant loss; 11 weeks).

A majority of participants referred to their faith as a means of coping and acceptance, such as one woman who shared “I thank God for everything. I believe it’s God’s plan” (Infant loss; 2 days). Women also reported they received support from their partner, family, friends, and healthcare providers during their grieving: “I visit my relatives and other friends who also come here at my place. This helps me not to think a lot (about the loss)” (Infant loss; 6 weeks).

Impact of fetal/child loss on attitudes toward HIV care.

Despite the negative impact on well-being, most women reported they continued their HIV care following the loss. One participant stated: “It has never discouraged me to come for treatment and care for my health” (Infant loss; 9 weeks). About one in five women reported they encountered a period of ambivalence or apathy related to continuing HIV treatment, although some later reengaged in care: “Losing my child has really affected my HIV care because I stopped taking medications for two months, and now I have started again. I have started again because my nurse advised me. I didn’t want to continue with medication” (Fetal loss; 34 weeks gestation). During the study survey at six months postpartum, 13 of the 15 women remained engaged in HIV care. The two who were no longer in care noted that the loss of their child was a considerable factor in discontinuing ART.

Discussion

This study described fetal and infant loss in a cohort of women in PMTCT care in Tanzania. Fifteen of 200 participants (7.5%) reported loss of their fetus or infant, with the majority of losses (n=10) occurring after birth in the neonatal or infant period.

Women reported significant delays in medical care that contributed to fetal/infant loss, as noted in other studies (Kavanaugh & Hershberger, 2005; Scott, Shieh, Umoren, & Conard, 2017; Waiswa, Kallander, Peterson, Tomson, & Pariyo, 2010). Delays in transfer to a higher level of care in the case of obstetric or pediatric emergencies were common. Following the loss, many patients noted poor communication from providers regarding the cause of death, which led to doubt and created challenges for coping. No participants reported their HIV infection was a factor that contributed to a delay in care, poor communication, or subsequent loss of their child, reflecting findings from a previous study (Sando et al., 2014). Our data support previous research indicating that delays in care and lack of communication are pervasive for many women receiving antenatal care in Tanzania, likely due to insufficient human resources, capacity constraints, or lack of training in patient-centered communication (Mbaruku, van Roosmalen, Kimondo, Bilango, & Bergström, 2009).

Expectedly, women reported feelings of sadness and grief, and in some instances signs of depression and suicidality, following the loss of a child (Adolfsson, 2011). Women in our study relied heavily on their faith to cope with their loss. They also frequently sought emotional support from partners, family, friends and healthcare providers. Similar to findings in other perinatal loss studies (Cacciatore et al., 2013), such strategies appeared to help women find a sense of meaning in their loss, which led to decreased feelings of guilt and blame, and increased acceptance.

These findings suggest there is a need for additional social, spiritual, and psychological support for HIV-infected women who experience fetal/infant loss, including bereavement counselling, chaplain services, and support services (e.g., social work). PMTCT care is an important point of contact for many HIV-infected women, and represent an opportunity to implement such services. Engaging support from partners, friends, family, and spiritual leaders in the community during the bereavement period may further bolster the emotional well-being of these women and support their continued engagement in HIV care.

A limitation of this study is that experiences with healthcare were self-reported. Interviews were conducted one to six months after the loss of the fetus or infant; therefore, findings from our study may not reflect the longer-term effects that a loss may have on HIV care engagement and well-being. Further, women who lost their baby six months ago may be coping with their grief very differently from those who experienced the loss one month ago. The experiences of these women are not intended to be generalized, as each woman’s circumstances surrounding the loss was different and closely linked to their interactions with the healthcare system, as well as their grieving and coping strategies. Additional studies are needed to understand changes in grief and coping over time in this population, and to gain provider perspectives to explore potential longer-term impacts of loss.

The resilience demonstrated by the women in this study is striking; despite experiencing a devastating loss and suboptimal healthcare, most participants remained motivated to continue HIV treatment. However, it is concerning that one-fifth of participants reported they had experienced gaps in care or dropped out of care following their loss. In order to best serve HIV-infected women who experience fetal and infant loss, PMTCT guidelines should directly address how to respond to women who experience such losses. Programs should have mechanisms in place for counseling, support and referrals, and should support patient-centered interventions to encourage long-term care engagement.