Perinatal palliative care in low- and middle-income countries: a scoping review

Introduction

Every year there are approximately 2.4 million neonatal deaths (1) and 2.6 million stillbirths around the world (2). Over 98% of this perinatal loss occurs in low- and middle-income countries (2). Perinatal loss, which consists of both neonatal mortality and stillbirth, is an important global and regional marker of population health. Neonatal mortality rates measure deaths of liveborn infants before 28 days of life while stillbirth rates capture fetal loss prior to delivery. Professional pediatric organizations suggest that the term “perinatal loss” should include neonatal deaths that occur at less than 28 days of age and fetal deaths at a gestational age of 20 weeks or more (3). In some settings, including many low- and middle-income countries, this definition is restricted to gestational ages 28 weeks or higher (4). In this paper, we retain the wider definition of “perinatal loss” to include gestational ages at or above 20 weeks. We also emphasize that neonatal death can occur anytime in the first 28 days of life, and that many of the infants who pass away during this time period have clinical needs, such as relief from pain and agitation, that are encompassed in perinatal palliative care yet are distinct from end-of-life care. Globally, the burden of stillbirth and neonatal death persists despite dramatic improvement in mortality for young children in recent decades. Neonatal mortality now comprises nearly half of all deaths under age 5 years (5). The importance of stillbirth as a form of perinatal loss has been recognized in leading public health journals for over a decade. For example, a 2011 series in the Lancet characterized stillbirth as one of the “most shamefully neglected areas of public health” (6) and called for increased investment in stillbirth research (7). Despite the rising predominance of child loss before birth and during the first month of life, especially in low- and middle-income countries, access to relevant perinatal palliative and psychosocial care is poor and understudied (8,9). Perinatal palliative care is a care model that supports families experiencing a life-limiting diagnosis for their fetus or newborn, or families who have suffered perinatal loss. Unfortunately, literature on supporting families following perinatal loss is concentrated within an Anglo-centric cultural context (10-13), in stark contrast to the communities in which most perinatal loss occurs. There exists an urgent need to better characterize the current state of global perinatal palliative practice, education, and research. Improved characterization of current perinatal palliative care practices will have the power to inform targeted palliative care interventions and address barriers to needed psychosocial support after perinatal loss in low- and middle-income countries and other resource-limited settings.

As a broader discipline, palliative care has gained increasing prominence, especially since the 1960’s when publications highlighted how end-of-life issues for seriously ill patients were not being met with traditional practices (14). On the global stage, the World Health Organization (WHO) recently identified palliative care as a public health priority, stating that “Palliative Care is explicitly recognized under the human right to health” (15). This energy has carried over to work addressing pediatric palliative care, with groups such as the International Palliative Care Network leading efforts to identify priorities within pediatric palliative care (16). Perinatal palliative care is related to pediatric palliative care yet possesses some unique challenges specific to managing fetal and neonatal patients. Similar to pediatric palliative care, perinatal palliative care aims to relieve suffering and improve the quality of life for infants and families facing severe life-limiting conditions. It also strives to address grief and coping amongst families experiencing loss. The first commentary on perinatal palliative care was published in 1997 (17) and has since sparked an ever-expanding literature base focused on this patient population (18-22). Contributions from leaders in perinatal palliative care have elucidated the role of perinatal palliative care antenatally and during birth planning (23,24), in guiding symptom management after birth (24,25), and in supporting families after the loss of their infant (25,26). Perinatal palliative care involves assisting families with managing both the actual loss of the physical fetus or newborn, as well as the loss of an envisioned future with a healthy child (27). Perinatal palliative care should be longitudinal, beginning at the time of diagnosis and proceeding throughout the time course of the disease (28,29).

Despite increased efforts addressing palliative care for children, there remain significant unmet needs in low- and middle-income countries. Data on global pediatric palliative care needs show that 98% of children requiring palliative care live in low-income countries (LICs) and lower-middle-income countries (LMICs) and that this number may be as high as 21 million children (9,30). Despite this burden, almost two-thirds of countries worldwide lack pediatric palliative care services (31). Where pediatric palliative care programs do exist in LICs and LMICs, they are often external to the mainstream health system. Key barriers to global palliative care coverage, as noted by the WHO, include insufficient training on palliative care for health professionals, cultural and social barriers, and misconceptions about the goals and breadth of palliative care services (32). Less is known about perinatal palliative care in LICs and LMICs; A 2023 integrative review of perinatal palliative care programs is emblematic of this research gap, as their search yielded 69 publications all of which were from high-income countries (21). While data on the global need for and models of perinatal palliative care services is scarce, common conditions requiring palliative services include severe prematurity, neonatal encephalopathy, and congenital anomalies (33). While perinatal palliative care extends beyond bereavement care, the heavy burden of perinatal loss in LMICs necessitates a heightened focus on bereavement care as a core component of perinatal palliative care in such resource-limited settings (34). Within the perinatal period, the 24 hours preceding delivery and the 24 hours following delivery represent nearly half of all perinatal losses (35-37). Given this concentrated burden of loss, which occurs during a time period when people expect to welcome a liveborn infant, there are unique psychosocial and palliative care needs that must be considered when caring for infants and bereaved families.

Consensus statements on palliative care recommend that all healthcare providers who care for people with advanced serious illnesses should be competent in basic palliative care skills (38,39). Similarly, high-quality bereavement care should be facilitated by health professionals with comprehensive and continuous education (25,40). These recommendations encompass those providing care during the perinatal period. In the United States, palliative care education is incorporated into the training curriculum of most pediatric and neonatology medical and nursing programs, ensuring that trainees are aware of and familiar with key palliative concepts (41,42). This is not true in most LICs and LMICs, where the burden of serious health-related suffering is the greatest (43). Despite its importance, access to training in palliative care is limited or lacking in most countries, which translates into unmet care needs for bereaved families (44). Similarly, there is a dearth of research exploring best practices in perinatal palliative care in low- and middle-income countries and the context- and culturally specific implementation of palliative care concepts. In this review, we synthesize the perinatal palliative care literature from low- and middle-income countries. We include literature from upper-middle-income countries (UMICs), LMICs, and LICs. We focus on the clinical practice of perinatal palliative care and palliative care educational models being used in these resource-constrained settings. We present this article in accordance with the PRISMA-ScR reporting checklist (45), with appropriate adaptations for the inclusion of a wider range of studies including qualitative research (available at https://apm.amegroups.com/article/view/10.21037/apm-24-87/rc).

Methods

Design

Given the underexplored nature of global perinatal palliative care education and research, we used a systematic scoping review approach (46). This review was guided by the methodologic framework established by Arksey and O’Malley (47) to map relevant literature within our area of interest, and allow our synthesis and analysis of the evidence with conceptual clarity related to the theme of global perinatal palliative care.

Research question

This scoping review aims to answer the following questions: (I) what elements of clinical perinatal palliative care are currently represented in published research from low- and middle-income countries; (II) what is the current state of perinatal palliative care training in low- and middle-income countries; (III) how do parents and families experience hospital-based perinatal palliative care in low- and middle-income countries; and (IV) what gaps in perinatal palliative care training and practice are identified based on a review of published literature.

Identifying relevant studies

The bibliographic search was initially conducted in April 2022 with a second extraction in August 2022 and a final extraction in January 2024 to extend the covered period of published articles through the end of 2022. There were no date restrictions. There were no restrictions placed on language during the initial data search, but analysis was limited to studies published in English. Unpublished literature was not searched.

The following database sources were used: PubMed, Scopus, Embase, Cochrane, CINAHL, and Global Health (embsco). The following keywords were used: “palliation”, “palliative”, “palliative care”, “terminal care”, “bereavement”, “advanced care planning”, “hospice”, “end-of-life care”, and “grief”. In conjunction, a pre-populated list of “developing countries” was used. Lastly the terms “child”, “infant”, “newborn”, “baby”, “neonat*”, “perinatal”, and “pediatric” were used to narrow the search to the perinatal population. When possible, the searches were managed using Medical Subject Headings (MeSH) for information searchers. Please see the supplemental materials for our full search strategy by database. No formal review protocol beyond what is described in the methods of this paper was used.

A pre-defined set of inclusion and exclusion criteria was used. We focused on studies covering the clinical care of pregnant or post-partum women in low- and middle-income countries who experienced stillbirth or death of their child within the neonatal period. Studies covering the training and education of healthcare workers treating this patient population were also included. Studies focused on pediatrics, obstetrics, or palliative care were included to ensure appropriate capture of the perinatal period. Both qualitative and quantitative approaches were included. Case reports and case series were included. Topical review papers and opinion pieces were excluded. We also excluded studies focused on the care of women and newborns in high-income countries, studies covering family support outside the setting of stillbirth or neonatal death, or papers that exclusively addressed the parental experience of loss outside of a healthcare setting. We excluded studies that described palliative care for infants >12 months of age or training for providers focused exclusively on older infants and children. Since not all papers disaggregated infant loss into the neonatal and post-neonatal periods, we initially considered papers that covered infants up to a year of age, with final inclusion or exclusion based on a relevance assessment during abstract or full-text review. If a study included both neonates and older children, it was included as long as a specific discussion around neonatal palliative care needs was present. Lastly, we excluded papers discussing the care of women following the elective termination of a pregnancy.

Definitions

We used a set of core definitions when screening relevant studies.

• Stillbirth: fetal death prior to, or during, delivery at ≥20 weeks gestation and/or weighing ≥500 g.
• Neonatal death: death of a live-born infant at or before 28 days of life.
• Infant death: death of a live-born infant before 1 year of life.
• Low- and middle-income country: based on 2022 World Bank Country and Lending Groups definitions with LIC economies defined as those with a gross national income (GNI) per capita of $1,045 or less in 2020; LMIC economies as those with a GNI per capita between $1,046 and $4,095; UMIC economies as those with a GNI per capita between $4,096 and $12,695.
• Training: any program focused on the education of healthcare workers. This can include didactic or hands-on training. Training could occur in a hospital or community setting.
• Healthcare worker: physicians, nurses, midwives, physician assistants, nurse practitioners, and any trainees associated with these roles.

Study selection

Study search and selection were conducted using Covidence (48), a web-based collaboration software platform that streamlines the production of systematic, scoping, and other literature reviews by facilitating a team-based approach to article review and organization. All documents were imported into Covidence and then screened for duplicates. Seven individuals (S.R., S.R., A.L., E.D., E.R., A.L.D.R., K.N.) were involved in study selection and data extraction. Three levels of screening took place to identify relevant and appropriate articles. First, a title and abstract screen were performed. Second, a brief full-text review was conducted. The final step was an in-depth full-text review with data extraction. For all three review stages, all remaining studies were screened by two reviewers. If both reviewers agreed on inclusion or exclusion, the article was appropriately classified. At the first two levels of screening, if there was disagreement then a third reviewer broke the tie to include or exclude the paper. At the in-depth review stage, papers for which there was a lack of reviewer consensus on inclusion or exclusion underwent a group discussion to decide on whether to include each paper.

Data collection and analysis

Prior to data extraction, we developed a classification scheme to catalog and organize the identified articles. Each article was classified first into one of three categories: clinical care, education and training, and provider experience. Articles that could be placed in multiple categories were classified into the most appropriate, based on group consensus. During the full-text review stage, an additional category of “parent experience” was added.

A qualitative analysis of the text, focused on aims, perceived gaps, and recommendations for practice change was performed. For each article, the following data were obtained and input into a shared electronic spreadsheet: title, author names, journal, publication year, study design, global region, country/countries, world-bank income status of country/countries, participants, sample size, analysis approach, and funding source. For each study we also documented if pain management was mentioned either for care while in the neonatal intensive care unit (NICU) or at end-of-life. If any question was not relevant or not reported, this observation was noted in the extraction spreadsheet. Lastly, the spreadsheet contained a column where reviewers could note any concerns about bias that may impact our interpretation of the findings presented in the associated article.

Analysis to relate studies to established elements of palliative care

After the completion of the summary tables described above, the seven data extractors met to discuss and categorize key findings and then develop themes. Next, ten core topics for perinatal palliative care were selected, building on the framework presented by Balaguer et al. that focused on the development of perinatal palliative care in high income countries (HICs) (19). Each extractor separately rated the included body of literature on how well it addressed these core elements of palliative care. Each topic was classified as “never”, “rarely”, “moderately” or “highly reported within the body of literature included in the scoping review”. Frequency of response by data extractors for each topic was then reported.

Results

An initial 17,463 articles were identified across all searched databases. An additional 19 papers were added from additional sources. A total of 10,145 articles remained after removing duplicate studies. Following the three-staged review of articles, 81 studies were included in our analysis. Please see Figure 1 for the study selection process.

Figure 1 Study flow diagram for data extraction. LMIC, lower-middle-income country.

Characteristics of included studies

The characteristics of our final 81 included studies are shown in Table 1 (clinical care and the providers’ experiences), Table 2 (education and training), and Table 3 (mothers’ experiences). The largest portion of published perinatal palliative care literature focused on the provision of care in a clinical setting (n=44). Nine studies focused on provider training or education in perinatal palliative care. Lastly, there were 28 that addressed parent or family experience. Five of these papers mentioned both parent and provider perspectives. Across topics, 17 papers mentioned the need for or use of pharmacologic or non-pharmacologic approaches to pain management within perinatal palliative care. A majority (n=14, 82%) of these studies classified pain and symptom management as a clinical or training gap.

All studies were conducted in low (n=2), lower-middle (n=44), or upper-middle income countries (n=29). In our analysis, mainland China was classified as upper-middle income while Taiwan was classified as high income. For this reason, studies from Taiwan were excluded. The largest numbers of studies came from Asia, with 28 publications coming from this region. The middle east/north Africa region was next at 21 studies. Sub-Saharan Africa had 10 studies within our sample and South America was represented in 8 studies. There were 7 studies from Europe and 2 from North America (Figure 2). The top three countries in terms of publications were: India [13], Iran [13], and Brazil [8]. There were 6 that represented a wide range of countries and could not be classified into a singular wealth stratum or region. In line with the broad inclusion of study types, there were 38 quantitative, 28 qualitative, and 15 mixed-methods studies included. The publication count per year was documented through 2022, as this was the final calendar year included in the data extraction. Publication counts rose steadily, increasing from 1–2 per year before 2010 and peaking at 23 publications in 2021 (Figure 3). Data from 2022 showed a slight downtrend at 16 publications.

Figure 2 Geographic distribution of perinatal palliative care studies amongst low- and middle-income countries/regions. Studies from high-income regions, including Taiwan, were excluded.

Figure 3 Perinatal palliative care publications by year from 2010 through 2022.

Authorship of included studies

There were 73 studies that could be classified into a singular country or region and had sufficient author information provided to be included in our authorship analysis. Of these, 62 (84.9%) had a first or last author from a UMIC, LMIC, or LIC. Of the included studies, 67 (91.8%) included an author from the country of focus in the manuscript. When we examined just LMIC and LIC focused papers, these percentages fell slightly; 79.5% of papers had a LMIC or LIC first or last author and 86.4% included an author from the country of focus. Four of the studies that did not include an author from the study country were from the same author with a focus in a LMIC. The other two studies without focus country representation were also from LMICs. Of the five studies with a focus country author outside of the first or senior position, two were from UMICs (same first author), two from LMICs, and one from a LIC (Figure 4).

Figure 4 Author representation in included studies. UMIC, LMIC, and LIC authorship data included. UMIC, upper-middle-income country; LMIC, lower-middle-income country; LIC, low-income country.

Perinatal palliative care provision—clinical care and providers’ perspectives

From the 44 studies that focused on how, and if, perinatal palliative care is provided in low- and middle-income countries, five core themes emerged. First, the impact of resource status on the availability of perinatal palliative care. Second, a prevailing perspective from healthcare providers focused on preserving life. Third, varied perspectives on family engagement for critically ill infants. Fourth, the need for dedicated guidelines to support palliative care. Lastly, the emotional toll of providing palliative care.

Limited availability of perinatal palliative care

Three multinational studies highlighted how access to perinatal palliative care is limited in resource-constrained countries. Amongst 113 countries and territories, those with higher World Bank income level and the highest levels of universal health coverage were more likely to offer children’s palliative care services (53). Similarly, countries with established adult palliative care programs were more likely to have pediatric and perinatal services. A European-focused study noted that countries classified as LMICs in Europe had limited access to neonatal palliative care compared to those with higher wealth rankings (52). This finding stands in stark contrast to a range of studies reporting that neonates make up a significant portion of pediatric patients classified as needing palliative care. For example, in Malaysia, Khalid et al. (2019) identified 63.9% of their pediatric patients with life-limiting illnesses were neonates, with 26.7% of them diagnosed with extreme prematurity, or birth before 28 weeks gestation (71). Other common situations needing neonatal palliative care included birth asphyxia and congenital malformations, including those from congenital infections such as Zika virus (51,83). Infants who died from congenital anomalies also had higher abandonment rates in the morgue following death, as reported by Osifo et al. (2011) from Nigeria (82).

Within settings that had perinatal or neonatal palliative care programs, a minority offered grief and bereavement support. Grunauer et al. (2021) assessed bereavement tools in pediatric intensive care units in 18 countries and found that LICs and LMICs lacked specialized professionals to support bereavement care and had the lowest rates of family-specific grief support (66). This limited access mirrors the work by Downing et al. (2015) that looked at research priorities within pediatric palliative care (16). Here, the global need for children’s palliative care was ranked 9^th and perinatal palliative care was ranked 14^th.

Provider focus on preserving life

When reported, the prevailing attitude of providers caring for pregnant women and newborns was focused on preserving life. In Jordan, physicians and nurses were both in favor of life-saving decisions regardless of the survival odds and potential health outcomes (49,50). In Turkey, 75% of providers surveyed believed that everything possible should be done to ensure a neonate’s survival, regardless of the prognosis (56). One study from India captured the hands-on experience providers had with withdrawing support, noting that none of the 31 pediatricians in the study’s survey had ever withheld new treatments or placed a do not resuscitate (DNR) order (69). Similarly, in Mongolia, a survey of over 100 neonatal resuscitation providers noted that over 90% were uncomfortable talking about non-initiation or withdrawal of care for infants with a low chance of survival (76). Incorporating the antenatal period, work from Grether et al. (2015) observed that, in Mexico, in the setting of a fetus with a poor prognosis, the majority of providers favored continuing the pregnancy, but were open to allowing for a palliative approach after delivery (65).

Opinions on parent engagement

A handful of studies commented on the role of parent engagement, or shared decision-making, surrounding perinatal palliative care. In Jordan, Abdel Razeq et al. (2020) found that physicians were the primary decision makers at “end-of-life” in 83% of cases (51). The authors of this paper advocate for increased family-focused decision-making that involves the larger care team. Another Jordanian study revealed an extreme of provider-driven decision making, noting how oftentimes physicians decide “not to share with the family the decision to put their child on a DNR order” (86). Two survey-based studies from Jordan and China found that “parental demands” or “patient-family interactions” were cited as key barriers to adopting neonatal palliative care practices (72,68). In contrast, a survey of 390 providers in Iran showed that 90.5% believed that parents should be involved in decision-making (80). Similarly, Gibelli et al. (2021) in Brazil reported that a shared decision-making model is very important in their clinical setting (63). Clinicians in this report incorporate parental discretion into their decision-making, especially in the setting of culture-specific preferences. Similarly, in India, Mishra et al. (2017) emphasized the importance of DNR status being a shared decision between medical providers and families (79). In Vietnam, Fadadu et al. (2019) noted that clinicians tend to make care decisions but that they consider “the family as a whole” rather than just the patient when making end-of-life decisions (61). Importantly, Miljeteig et al. (2009) from India commented on the gender discrimination that occurred in end-of-life decision making, noting that providers felt a duty to protect female newborns against discrimination but felt powerless against entrenched cultural prejudices (78).

Lack of perinatal palliative care guidelines

Many studies commented on the lack of guidelines to direct perinatal palliative care (53-55,62,64,75,76-78,81,85,86,89). In Iran, studies identified the lack of palliative care guidelines as a key barrier to providing perinatal palliative care (53,54,81), as well as contributing to a fear of litigation and unclear ethical expectations around the care of critically ill neonates (54). In India, Mascarenhas et al. (2022) reported that only 10.8% of units had a structured policy for neonatal palliative care, but that even in these units critical elements of neonatal palliative care were omitted (75). In Brazil, Daudt Fernandes et al. (2021) commented how NICU nurses had trouble distinguishing between “end-of-life” care and other forms of palliative care, and that guidelines would help address this gap (62). Other work, such as that from Wilkinson et al. (2019) from the Philippines (89), suggested that guidelines could be used on a national level, serving as a framework for care while still allowing an individualized approach based on provider and family beliefs. Wilkinson’s report also suggested using a wider “gray zone”, or the zone in which an infant is considered potentially viable, within low- and middle-income countries. The need for viability limits that are applicable in low- and middle-income countries, and consider local beliefs, was also reflected work from McAdams et al. (2012) in Mongolia (76). Several publications, specifically from Mongolia (76), India (78), Mexico (65), and China (68), emphasized that guidelines for perinatal palliative care should reflect local context and culture.

Emotional toll of providing perinatal palliative care

Clinicians from several countries commented on how caring for neonates at the end-of-life is emotionally challenging. In Brazil, Camilo et al. (2022) reported how nurses view themselves as key supporters for families during this time, but also feel like they become involved in the family’s suffering (57). A similar Brazilian study referenced the intense grief nurses experience when providing palliative care for neonates (60). Here, nurses expressed a desire for additional training in order to properly provide emotional support for families during end-of-life care. In South Africa, Maud (2013) touched on this topic by noting that when there are limited providers, medical staff prefer to care for mothers with live babies as it is less distressing (73). In Iran, Kadivar et al. (2021) elevated the issue of moral distress among NICU nurses, noting that nurses need additional training and guidance on how to manage ethical decisions and thus minimize moral distress (70). Kadivar and colleagues simultaneously noted that nurses feel it is their duty to care for the family of the infant as well as the infant themselves. In Turkey, Yenal et al. (2021) commented on the pain and grief providers feel when caring for women who had a perinatal loss (90). The authors emphasized that this pain was magnified if the provider was a mother herself and note that providers need formal grief training in order to properly care for women who experience perinatal loss.

Perinatal palliative care training and education

Only nine papers focused on education and training in perinatal palliative care. Three studies described the general status of perinatal palliative care training. In Uganda, survey and focus groups revealed a desire for training in symptom management, psychosocial care, bereavement, teamwork, and managing personal stress (93). Here, Amery et al. (2010) emphasize the need for trainings tailored specifically to the African context. In India, Latha et al. (2014) share that 88% of pediatric trainees never received any training in palliative care and 77% felt uncomfortable having conversations with families about palliative care (96). The authors suggest that palliative care training be embedded within existing medical education programs to ensure that all providers obtain the necessary palliative care skills. Similarly, Shen et al. (2022) conducted a series of interviews with midwifery students in China about their experiences caring for women suffering a perinatal loss (99). The authors concluded that students are inadequately prepared to deal with perinatal death and require training specifically focused on communication and coping skills.

Five studies reported on training or educational programs covering pediatric and perinatal palliative care. Short courses from Iran (100), Jordan (92), and Morocco (95) all showed an increase in participant knowledge after the course. Hamdoune et al. (2022), in Morocco, further showed the benefit of incorporating simulation training to provide an accurate representation of palliative care and lessen misconceptions about palliative care that learners may have prior to undergoing training (95). One study, by Doherty et al. (2021), in India and Bangladesh noted that virtual learning paired with local facilitators offered a viable method to exchange ideas across contexts and generate a supportive learning community (94). Lastly, a multinational assessment of pediatric palliative care training programs suggested that training in palliative care teaching allows for a wider reach of palliative care education and that a modularized teaching program allows for adaption across varied clinical settings (97). All five of these studies suggested that medical education programs need to increase formal training in palliative care and end-of-life care for children and neonates. Only one study, by Qian et al. (2022), looked at reducing secondary traumatic stress and emotional exhaustion in medical providers (98).

Mothers’ perspectives on hospital provided perinatal palliative care

Twenty-eight papers focused on how mothers who suffered a perinatal loss experienced health-facility based care following their stillbirth or neonatal death. From these papers, three core themes emerged. First, mothers described poor care and communication around the time of their loss. Second, women struggled to balance cultural expectations around perinatal loss with their personal needs. Third, bereaved mothers shared unmet grief needs and a desire for better psychosocial support from their healthcare providers.

Poor care and communication

Many studies noted that gaps in communication exist, most notably around informing parents about stillbirth or neonatal death (102,105,106,113,114,116,127). In Pakistan, Ahmed et al. (2020) report that poor communication around the causes of perinatal death led women to have “fatalistic opinions” about the cause that were not consistent with the medical explanations (102). Other studies, such as Meyer et al.’s (2018) work in Ghana, comment on the “cultural silence” around perinatal loss which leads to diminished communication and a lack of explanations to parents about the cause of perinatal loss (113). In several settings, even when communication occurred it was not considered appropriate, either because parents were not treated with respect (105) or were spoken to in an insensitive and inappropriate manner (107). In Nigeria, Milton et al. (2021) reported that midwives would often yell at women while they were in labor, while others delivered alone without a healthcare worker in attendance (114). In two studies, the lack of communication between a provider and the mother was considered in line with cultural beliefs. In both Jordan (101) and Iran (109), the infant’s father or another family member was responsible for informing the mother about the perinatal death. In contrast, in Kenya, Okondo et al. (2022) described how male caregivers of critically ill infants were often ignored by healthcare workers and left out of care conversations (116). Importantly, communication gaps were reported with providers from many disciplines and specialties including physicians, nurses, and midwives from both pediatric obstetric teams.

Balancing cultural expectations and personal preferences

A study that interviewed 134 women in Uganda and Kenya noted that parents were often prevented from seeing or holding their child and were barred from openly discussing the death or attending the burial of their child (104). The authors reference a common belief in “witchcraft” and “God’s plan” as the causes of perinatal loss, which contribute to stigma and impair healing. They state that there is an urgent need for culturally sensitive programs aimed at allowing women to grieve in their own way. Similarly, Christou et al. (2021) in Afghanistan (105) and Kuti et al. (2011) in Nigeria (112) highlight that women often want to see their child after stillbirth but often are forbidden to do so by healthcare workers. For women who learn about a life-limiting fetal anomaly before delivery, the conflict of aligning personal and cultural beliefs also exists. In Iran, women report significant emotional suffering when trying to decide whether to continue or terminate a pregnancy based on prevailing cultural norms (111,122). In Thailand, Punaglom et al. (2022) highlight that cultural beliefs are not always an obstacle, but rather can be used by healthcare teams to adapt nursing interventions to the needs of bereaved families (121).

Unmet grief needs

Eleven studies reported that families want professional bereavement support but do not receive it (101,103,107,113-118,123,125). The unmet need for grief and bereavement support was greatest in countries within a lower wealth stratum. As Horey et al.’s (2021) assessment of parents in 40 countries demonstrated, women in higher-income countries have access to more bereavement care practices (110), which is helpful in managing grief. Mirroring this finding, a comparative study of women in Brazil and Canada reported that complicated grief following perinatal loss was higher amongst Brazilian women compared to their high-income country counterparts in Canada (35% vs. 12%) (117). In many settings, the grief that women felt sometimes translated into psychological harm and concerns that the loss of their child was “God’s will” (104,113), based on prevailing cultural beliefs. In other settings, local cultural practices were protective. In Thailand, Punaglom et al. (2022) highlighted how culture influences grieving practices, with self-healing amongst mothers in this study occurring via the Thai practice of forgiving oneself and others (120,121).

While the maternal experience was the focus of most included studies, some work included how grief impacted other family members. A study by Das et al. (2021) from India noted that both mothers and fathers experience grief following perinatal loss, but that women express it more openly (106). A similar finding was presented by Nournorouzi et al. (2022) in Iran, where they suggest that expanded perinatal grief programs should involve both parents rather than just the mother (115). In Nigeria, recognizing the role of family and social dynamics on processing perinatal loss, Milton et al. (2021) suggested that bereavement support should include the broader family rather than just the mother (114). Across studies, unanticipated losses and limited family support worsened grief severity (106,119,125,126). Other reported risk factors for increased grief after stillbirth or neonatal death included having no prior children (108) and having the perinatal loss after 28 weeks gestation (117). In Indonesia, Samutri et al. (2022) highlighted that the birth of another child after perinatal loss can have a positive or a negative effect on grief (128). Many studies note that grief is a personal journey and that providers caring for families need to be attuned to the individual support needs of each parent dyad following perinatal loss (101-105,109,111,115,128).

Relation to established elements of perinatal palliative care

Through this review we aimed to better evaluate the components of perinatal palliative care that are currently being practiced in low- and middle-income countries, as well as the identified gaps in training and clinical care. To this, we mapped key themes from our low- and middle-income country review to a collated list of integral elements of perinatal palliative care (Table 4). This list utilized the framework presented by Balaguer et al. that focused on the development of perinatal palliative care in HICs (19). Three important adaptations to this framework were made prior to our review to better capture potential gaps in PPC in low- and middle-income countries. First, we split Balaguer et al.’s “comprehensive care” into “spiritual care” and “mental health care”. Second, we separated out “bereavement” into its own category. Lastly, we added the concept of “seeing and holding after loss” as an independent field given its importance in the literature from bereaved mothers.

Discussion

Our review of 81 studies on perinatal palliative care included studies conducted in Africa, Asia, the Middle East, Europe, as well as North and South America. Overall, the studies identify an urgent need for strengthening perinatal palliative care and for enhancing education for healthcare providers working in this field. This finding includes training in and provision of psychosocial support for bereaved parents. The studies also noted a need for improved communication skills for healthcare providers during end-of-life and bereavement care. Researchers called for improvements at the facility level as well as the health system or national levels. Several studies cited the need for standardized guidelines around perinatal palliative care and national policies directing resources to support palliative care during the perinatal period. Many of the themes identified in this scoping review were interrelated; all recognized the importance of extending global advancements in palliative care into the neonatal and fetal periods. Although palliative care has been slowly improving in low- and middle-income countries overall (129-132), the benefit to the pediatric and perinatal populations have been limited (9,58,133-135). The extent to which neonates, and the parents of stillborn infants or those with life-limiting conditions have been incorporated into practice and policy changes has been variable. Our scoping review adds to the current global body of palliative care literature by demonstrating the unique place of perinatal patients within the field of palliative care, the importance of focused training for practitioners in this space, and how institutional and national guidelines can specifically address and support perinatal palliative care in low and middle-income countries.

The issues highlighted in this review of perinatal palliative care reveal important differences in how fetal and neonatal patients are viewed relative to older children and adults who need palliative care. This finding was reflected predominantly in the qualitative studies with both healthcare providers and parents. First, several studies noted that the loss of unborn or newly born children was frequently blamed on witchcraft or described as punishment for a mother’s wrongdoings (104,114), attributions which do not exist as frequently in the deaths of older children or adults. Similarly, stillborn infants or those who pass soon after delivery often do not receive customary funeral or burial rights (34). Interestingly, despite the apparent devaluation of fetuses and neonates in the study settings, clinicians favored providing life-sustaining treatments even in the context of a poor prognosis. Compared to literature from HICs, where clinicians accept withdrawal of intensive life-sustaining treatment or limiting invasive interventions for neonates with life-limiting conditions (136,137), studies within our scoping review captured a healthcare provider view favoring intervention regardless of survival potential. Another key difference between our perinatal review and prior work on pediatric palliative care is how pain management was addressed. While a few studies noted the need for improved training in neonatal symptom management, the issue of pain management and opioid access was not commonly mentioned in the body of literature included in this scoping review. Indeed, of the 17 studies that mentioned pain management, 14 did so by framing this topic as a “gap” in current clinical care and/or training. Access to pain medications is an important component of perinatal palliative care as symptoms of the dying process—such as air hunger and agitation—can be distressing (138). Opioid access is a key issue within adult and pediatric palliative care, with LICs and LMICs receiving insufficient pain-relieving medication for their palliative care populations (134,139-141). Similarly, perinatal palliative care recommendations include feeding infants who are capable of oral intake, with the focus of such feeding being on comfort rather than on growth (138,142,143). The body of literature included in this review did not address comfort-focused feeding practices as a component of palliative care. Lastly, pediatric palliative care literature in low- and middle-income countries focuses heavily on the community or outpatient setting, with palliative care often described as being delivered in the home or hospice center (31,134). In contrast, perinatal palliative care is nested primarily in the inpatient setting, whether that is in community hospitals (144) or tertiary care medical centers (25,26). This distinction is important when considering guidelines for the provision of palliative care, who provides that care, and what national policies need to be in place to support care delivery.

The need for improved training and education in perinatal palliative care was noted by providers and parents. Studies called for improved basic training in palliative care principles for all healthcare providers who care for pregnant women and newborn infants. In addition to providing guidance and training for physicians (145) and nurses (146), midwives have been identified as critical providers of perinatal palliative care, given their prominent role at deliveries (147). Several studies included in our review highlighted the need for developing specialized palliative care training with the goal of increasing the number of palliative care providers, across disciplines, present in low- and middle-income settings. In considering how to implement and support palliative training initiatives in these regions, it is important to consider the availability of educators with contextual and cultural knowledge, as HIC training guidelines and practices may not sufficiently meet the needs of providers and patients in low- and middle-income countries (34). Secondly, training programs must consider the effect on clinics and hospitals when staff take time off for training, the delivery and travel costs associated with participating in training, and the administrative needs for a given training program (148). Distance or remote learning has been gaining traction as an approach in both palliative care and neonatal care (149-153). The International Children’s Palliative Care Network (ICPCN) has online training available and includes modules on neonatal palliative care (154). This resource includes educational content on communication, grief, and bereavement. The Education in Palliative and End-of-Life (EPEC) curriculum from Kenya has also been used in sub-Saharan Africa as a way to deliver online palliative care education that is targeted to the Sub-Saharan African context (149).

The studies covering both provider and parental perspectives revealed a need for institutional and national guidelines to direct and support perinatal palliative care. Several papers highlighted the need for guidelines that are tailored to the local environment, cultural beliefs, and available resources. This need echoes recommendations seen in the pediatric and adult palliative care literature (155-157). A recent review of perinatal palliative care suggests that palliative care programs in perinatal medicine be comprehensive, integrative, and start early in the care course (19). Integrated care refers to introducing palliative care measures alongside curative care as soon as a diagnosis is made (14,158,159). This philosophy should not be resource-dependent and thus can be applied in low- and middle-income countries. When considering the perinatal population, variation existed on the perceived degree to which parents should contribute to care decisions, and therefore how much flexibility should be interwoven into perinatal palliative care guidelines. There was also limited discussion in the included publications on how to assess and provide for a family’s bereavement needs post-loss. While healthcare providers and parents quoted in the included studies expressed concern about the lack of psychosocial support offered to those affected by perinatal loss, the analysis did not extend to how address these gaps. Globally, there is a plethora of literature on how perinatal loss impacts parental mental health (160,161). For example, in high-income countries, estimates of depression following perinatal loss range from 10–25% (162-164) and reported post-partum depression rates range from 30–60% (165-168). While reported rates of perinatal psychopathology in LICs and LMICs are limited, a recent review estimated depression rates in sub-Saharan Africa to be 18% (169). Globally, the literature highlights the need for better mental health support after perinatal loss but limited examples of how to enact providing such care in low- and middle-income countries. While LIC and LMIC targeted resources for postpartum depression exist, such as the WHO’s Thinking Healthy (170), such guides do not cover the unique context of perinatal loss. Likewise, provider burnout and moral distress when working in a setting with high perinatal loss rates have been widely reported (171-176). Despite this, integrated support for perinatal providers in low- and middle-income countries is limited. Indeed, we found no examples of provider support within our reviewed body of literature.

Representation and authorship

Within this scoping review, it is imperative that we acknowledge that the articles included in the analysis do not represent the full range of experiences and perspectives within perinatal palliative care in low and middle-income countries. The lack of published evidence does not equate to a lack of innovative, resourceful, and effective clinical practice; rather, this review reflects the paucity of dissemination of research and/or clinical practices in low- and middle-income country settings. Underreporting of clinical practices and outcomes is common in low- and middle-income countries, where time, budgetary, and data collection limitations preclude the publication of clinical and educational data. We recognize the challenges of dissemination in settings with limited resources and understand that publications from any setting reflect sites with a certain level of financial and academic support. Importantly, 96 countries from the 134 countries currently designated as lower-income, lower-middle, or upper-middle income had studies included in this scoping review. For LICs, only 2 of the 26 countries in this economic stratum were captured in this review. Furthermore, 74 of the 96 countries included in this review were only represented within one of the six multi-country publications; only 22 countries had papers dedicated to perinatal palliative care or associated training in their specific country context. There are, therefore, important global voices that were not captured in this analysis. However, we should recognize that 85% of studies included in this review had a low or middle-income author in the first or senior position and 92% had focus-country representation. Prior reviews on global health authorship have reported first-author rates amongst LIC and LMIC authors of 50% (177), and that LIC and LMIC author inclusion even within the “decolonizing global health” space was below 25% (178). A review covering 1990–2013 noted that LIC and LMIC first-authorship has increased for research funded from LMIC sources, but declined over time for research funded from high-income countries (177). Another poignant example of the limited representation of low- and middle-income country authors can be seen in recent bibliometric reviews on global palliative care research (179) and perinatal palliative care (180). In these papers, North America, Europe, and Australia were identified as the primary contributors to the global literature on palliative care. Elevating low- and middle-income country authors in this space is essential. To better understand and address barriers to perinatal palliative care provision and training in low- and middle-income countries, we need better representation of current practices, challenges, and perspectives in the global body of literature.

Limitations

This review has a few key limitations. First, as described above, barriers to dissemination of research and clinical practices for low- and middle-income experiences make it difficult to synthesize actual practices. Second, we omitted five articles from the original data extraction because they were written in languages other than English. This limit may have resulted in the oversight of unique and important perspectives on perinatal palliative care. More importantly, the fact that so few articles in languages other than English were identified reflects a broader limitation in the literature where experiences from non-anglophone countries are less well represented (181). Third, our study was not designed to evaluate the quality of services provided, nor was this information readily available in the published literature. As with related systematic and scoping reviews, we were unable to systematically critique included articles in terms of bias and quality due to the descriptive nature of many of the included manuscripts. Fourth, although we used a number of free-text and MeSH terms addressing perinatal palliative care provision and training, there is a possibility that non-reviewed studies that used other terms with similar meaning may have been overlooked. For example, our search did not include the terms “comfort” or “bonding”, common components of perinatal palliative care provision but that we felt would be captured within articles retrieved using our selected terms. Next, our study intentionally focused both on palliative care delivery and training. It is possible that by combining these two important topics, we were limited in the depth to which we could assess either. However, we felt that the value added by doing a combined analysis of training and clinical care outweighed this limitation. Lastly, by focusing on training and clinical care no studies in our included article sample described home-based delivery of perinatal palliative care and we excluded studies that exclusively described the lived experience of bereaved mothers following perinatal loss. While outside the scope of this study, integrating literature that covered this important topic could have impacted our interpretation of palliative care delivery and training within certain cultural contexts.

Conclusions

Our findings demonstrate an urgent and unmet need to strengthen perinatal palliative care research, care delivery, and the associated training for healthcare workers in low- and middle-income countries. The conduct of ethical, robust, and culturally informed research amongst pregnant women and neonates must address problems that are specific to those patient populations. Such research can guide future practice and policy. Healthcare workers and families desire improved guidelines about perinatal palliative care that reflect the realities of local culture and resources. National policies, that are actively maintained and updated to reflect best practice guidelines, are needed to guide the appropriate delivery of perinatal palliative care. Facility-level adaptation of national guidelines based on site-specific resources and needs can then aid in local integration. Such strategies must encompass symptom management, compassionate communication with families, psychosocial support after stillbirth or neonatal death, and emotional and mental health support for healthcare workers who work in palliative care. Resource investment should focus on these challenges as well as foundational factors such as recognizing the importance of perinatal palliative care as a unique discipline within palliative care, the importance of data collection in driving health policy, and the vitality of incorporating palliative care training across disciplines and specialties.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-87/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-87/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-87/coif). Sharla Rent reports the grant from National Palliative Care Research Center and support for attending meeting from American Academy of Pediatrics. M.L. has received grant support from the National Institutes of Health, BAND foundation, and Child Neurology Society. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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