BJOG: An International Journal of Obstetrics & Gynaecology ( IF 4.7 ) Pub Date : 2024-12-16 , DOI: 10.1111/1471-0528.18051 Hannah Blencowe, Oona Campbell, Toma Kerac, Renae Stafford, Vandana Tripathi, Veronique Filippi
Stillbirths are one of the world's most neglected tragedies. The estimated 1.9 million babies that are stillborn after 28 completed weeks of pregnancy in 2021 underestimates the overall burden of all fetal deaths from 22 weeks onward [1]. Each death has an important impact on affected women, families and healthcare workers [2]. Yet, despite this, until very recently, national governments, UN organisations and civil society institutions (including non-governmental organisations and professional associations) worldwide have given little attention to stillbirths. This has resulted in lack of prioritisation of stillbirths in data strengthening efforts, limiting visibility of underlying biomedical causes [3]. This coupled with the failure to include stillbirths in maternal and child health dialogues exacerbates stigma towards affected women, and frequently leaves bereaved parents to deal with their grief in silence.
Perinatal mental health disorders, occurring during pregnancy and in the first year after childbirth, affect almost one in five women giving birth and have only recently been brought out of the shadows [4]. Many organisations are now accelerating their focus on the issue and global guidance on the integration of perinatal mental health into routine healthcare provision is now available [5]. However, despite a strong body of evidence describing increased risks of adverse perinatal mental health outcomes associated with stillbirth in high-income countries [2], and newer evidence reporting similar effects across a wide range of low- and middle- income countries (LMICs) [6-9], stillbirths have been to-date largely left out of perinatal mental health guidance.
We conducted a rapid review of evidence on the perinatal mental health consequences of stillbirth as part of the MOMENTUM Safe Surgery in Family Planning and Obstetrics (MOMENTUM Safe Surgery) project's work to improve postnatal services [10, 11]. Collating available data across 20 studies from 12 low- and middle-income countries, a median of 41% of women reported evidence of depression in the year following a perinatal loss (stillbirth or early neonatal death) [9]. This is at least double the risk compared to after a live birth, translating to around 1.2 million women annually with depression in the year following a stillbirth or early neonatal death in sub-Saharan Africa and South Asia alone. Increases in anxiety and stress were also observed, presenting a substantial burden on women, families and communities in these regions.
Adverse perinatal mental health consequences following stillbirth can be partly mitigated through timely, person-centred supportive bereavement care. The past decade has seen large advances in understanding the experiences and care needs for affected women, partners and families, including the introduction of national care bereavement pathways in several high-income countries [12]. While the principles for bereavement care are likely to be similar across settings, there are large gaps in evidence in how these can be optimally delivered and tailored to bereaved women in LMICs [13]. In these regions, stillbirth often carries a significant stigma, expressions of grief vary widely, and there may be constraints on frontline health resources. These unique contextual factors highlight the need for targeted research and strategies to address the specific challenges associated with stillbirth bereavement in LMICs.
The MOMENTUM Safe Surgery review looked at interventions to address the perinatal mental health needs of women experiencing stillbirth in LMICs [10]. Only three published small studies (from India and Iran) were located, providing low-quality evidence of some improved psychological outcomes with mindfulness, individual and small-group counselling interventions for bereaved women [14-16]. Three additional studies are currently underway [17-19].
This lack of a robust evidence base for interventions in LMICs may partly explain the absence of this important issue from global guidance. However, this silence in guidance and training documents potentially misses important opportunities to translate what is currently known into practice. Emerging evidence from the literature shows that women from a wide range of LMIC geographies express a shared desire for specific components of care aimed at enhancing their well-being after stillbirth. Notably, communication, active involvement in management decisions, having physical needs met, receiving respectful care and personalised support for subsequent pregnancies are consistently identified as crucial themes in improving the overall experience for these women (see Box 1) [10].
BOX 1. Positive aspects of care reported by women to improve experience and well-being after stillbirth in LMICs [10].
Communication:
Breaking bad news: Communicate truthfully, clearly and compassionately to the woman directly that her baby has died. In her own language. In a private space. Check understanding.
Ongoing communication: Offer to communicate to family members afterwards if woman desires. Show empathy and sensitivity to the woman and family's needs and preferences. Verbal encouragement/ comfort. Encourage questions.
Around cause of death: Provide the most accurate information on cause of death available, including death certification where possible.a Attributing death to a higher power, ‘God's will’, may not be appreciated by all.
Involvement in management decisions: Provide opportunity to discuss management options for delivery and postnatal care, including decisions around sedation and suppression of lactation. Avoid paternalistic decision-making on behalf of woman or defensive behaviours (to avoid blame).
Having physical needs met: Optimal management of physical condition, both around the time of childbirth including appropriate analgesia and ongoing post-partum care.
Respectful care: Provision of option for care separated from women with live births. Provision for presence of family if desired throughout care. Respectful handling of the stillborn baby. Provide opportunity to see and hold baby if desired.
Tailored care for next pregnancy: To address physical and emotional needs, tailored to women's preferences and taking into account the cause of previous stillbirth.
aWhere there is a lack of information on cause of death women left to construct their own explanation, enforcing cultural misbeliefs around supernatural causes of stillbirth.
In addition to the increased psychological risks, women experiencing stillbirth are also known to be at higher risk of physical complications, such as post-partum haemorrhage, infection and obstetric fistula. Current normative standards for postnatal care developed by the World Health Organization focus on ‘uncomplicated’ births only, a missed opportunity to intervene early to prevent, detect and manage both physical and psychological complications and provide ongoing care such as voluntary family planning services and planning care for next pregnancy for those experiencing birth complications, including stillbirth [20]. Action is needed to develop extensions to the existing postnatal care guidelines to provide best practice guidance for the ongoing care of bereaved women. In addition, as routine postnatal care is often perceived to revolve around the care and immunisation of the baby, bereaved women frequently have lower levels of engagement despite their more complex needs. Therefore, more pro-active approach may be required, both to facilitate engagement with the health services in this critical period and to provide tailored care to ensure the needs of this population are met.
In addition to the 1.9 million women experiencing stillbirth worldwide each year, a further 1.7 million will be affected by early neonatal death. As many of these deaths are preventable, action to improve timely, equitable access to high-quality care along the continuum is urgently needed, but must be coupled with action to improve the supportive care that bereaved women receive to reduce psychological morbidity. There are many similarities between the experiences of women affected by stillbirth and early neonatal deaths [21]. A large proportion of these deaths occur in health facilities, with the babies dying before birth or before leaving the health facility. In these cases, the baby's existence or personhood is rarely being acknowledged, names seldom given, most never are introduced to the wider family, cultural events such as burials infrequently undertaken; hence their births and deaths are surrounded with stigma [22].
Summarising the evidence is a critical first step towards including the specific needs of bereaved women and fathers into global and national guidance and training materials. Including bereaved women, husbands, partners, family and the wider community alongside health workers in future intervention research will be essential across a wide range of contexts. Further research to close specific evidence gaps may be needed. For example, the impact of stillbirth on partners, children and other family members in many settings is poorly understood. In addition, although healthcare workers such as obstetricians and midwives are the main providers of clinical and supportive care for women and families around the time of stillbirth, the high emotional demands of this role alongside regular duties are frequently overlooked. Future studies are needed to understand the needs of health workers around the time of a stillbirth and how their support can best be integrated into comprehensive bereavement care provision.
Going forward, existing and emerging evidence in this area can be used together with examples of best practice to improve provision of supportive care for every bereaved mother. There is an urgent need for normative guidance upon principles for supportive care after a stillbirth or neonatal death based on existing evidence and widespread stakeholder consultation including UN partners, professional associations, frontline health professionals and bereaved parents with high representation from high-burden settings. These will need revising as new evidence emerges.
And whilst this process is undertaken, what is increasingly clear is that we have sufficient evidence to implement three important changes now. First, we can increase awareness among communities of healthcare professionals around the specific issues faced by women following stillbirth and early neonatal death. Second, provision of communication training and support to those healthcare professionals caring for affected women is possible now in all settings. National and international organisations of obstetricians and midwives can play a critical role in achieving this. Thirdly, societal awareness and understanding about stillbirths and early neonatal deaths in every country could be increased for example through information and media campaigns. Implementing these steps now could ultimately improve perinatal mental health and well-being among bereaved mothers everywhere.
中文翻译:
被忽视太久:中低收入国家死产对围产期心理健康的影响
死产是世界上最容易被忽视的悲剧之一。据估计,2021 年有 190 万名婴儿在怀孕 28 周后死产,这低估了 22 周以后所有胎儿死亡的总体负担 [1]。每一次死亡都会对受影响的女性、家庭和医护人员产生重要影响 [2]。然而,尽管如此,直到最近,世界各地的各国政府、联合国组织和民间社会机构(包括非政府组织和专业协会)对死产的关注仍然很少。这导致在数据强化工作中缺乏对死产的优先考虑,从而限制了对潜在生物医学原因的可见性 [3]。再加上未能将死产纳入孕产妇和儿童健康对话,加剧了对受影响妇女的污名化,并经常让失去亲人的父母默默地处理他们的悲伤。
围产期心理健康障碍发生在怀孕期间和分娩后的第一年,几乎影响了五分之一的分娩女性,并且直到最近才走出阴影 [4]。许多组织现在正在加速关注这个问题,并且现在已经提供了关于将围产期心理健康纳入常规医疗保健服务的全球指南[5]。然而,尽管有大量证据表明高收入国家与死产相关的不良围产期心理健康结局风险增加 [2],并且新的证据表明在广泛的低收入和中等收入国家 (LMIC) [6-9] 中也有类似的影响 [6-9],但迄今为止,死产在很大程度上被排除在围产期心理健康指导之外。
作为 MOMENTUM 计划生育和产科安全手术 (MOMENTUM Safe Surgery) 项目改善产后服务工作的一部分,我们对死产对围产期心理健康影响的证据进行了快速评价 [10, 11]。整理来自 12 个低收入和中等收入国家的 20 项研究的现有数据,中位数为 41% 的女性在围产期丢失(死产或新生儿早期死亡)后一年内报告了抑郁证据 [9]。与活产后相比,这至少是其两倍,仅在撒哈拉以南非洲和南亚,每年就有约 120 万名妇女在死产或新生儿早期死亡后一年内患抑郁症。还观察到焦虑和压力的增加,给这些地区的妇女、家庭和社区带来了沉重的负担。
死产后不良的围产期心理健康后果可以通过及时、以人为本的支持性丧亲护理来部分减轻。过去十年,在了解受影响女性、伴侣和家庭的经历和护理需求方面取得了长足的进步,包括在几个高收入国家引入了国家护理丧亲途径 [12]。虽然不同地区的丧亲照护原则可能相似,但在如何为低收入和中等收入国家的丧亲妇女提供最佳服务和定制这些服务方面存在很大的证据差距[13]。在这些地区,死产往往带有严重的耻辱感,悲痛的表达方式差异很大,并且一线卫生资源可能受到限制。这些独特的背景因素凸显了需要有针对性的研究和策略来解决与中低收入国家死产丧亲相关的特定挑战。
MOMENTUM Safe Surgery 综述着眼于解决中低收入国家死产妇女围产期心理健康需求的干预措施 [10]。仅找到了 3 项已发表的小型研究(来自印度和伊朗),提供了低质量的证据,表明正念、个人和小组咨询干预对丧亲女性的心理结局有所改善 [14-16]。目前还有 3 项研究正在进行中 [17-19]。
缺乏强有力的低收入和中等收入国家干预措施证据基础,可能部分解释了全球指南中没有这一重要问题的原因。然而,指南和培训文件中的这种沉默可能会错过将当前已知内容转化为实践的重要机会。文献中新出现的证据表明,来自中低收入和中等收入国家广泛地区的妇女表达了对旨在提高死产后健康状况的特定护理组成部分的共同愿望。值得注意的是,沟通、积极参与管理决策、满足身体需求、接受尊重的护理和对后续怀孕的个性化支持一直被认为是改善这些女性整体体验的关键主题(见框 1)[10]。
插文 1. 妇女报告的护理对改善中低收入和中等收入国家死产后体验和幸福感的积极方面 [10]。
沟通:
爆料坏消息:真实、清晰和富有同情心地直接向妇女传达她的孩子已经死亡。用她自己的语言。在私人空间。检查理解。
持续沟通:如果女性愿意,事后主动与家人沟通。对女性和家庭的需求和偏好表现出同理心和敏感性。口头鼓励/安慰。鼓励提问。
关于死因: 提供最准确的死因信息,包括尽可能的死亡证明。a 将死亡归咎于更高的力量,即“上帝的旨意”,可能不是所有人都欣赏。
参与管理决策:提供讨论分娩和产后护理管理选择的机会,包括围绕镇静和抑制泌乳的决策。避免代表女性做出家长式决策或防御行为(以避免责备)。
满足身体需求:对身体状况进行最佳管理,包括分娩前后的适当镇痛和持续的产后护理。
尊重护理:提供与活产妇女分开的护理选择。如果愿意,在整个护理过程中提供家人在场。尊重对待死产婴儿。如果需要,提供看到和抱抱婴儿的机会。
为下次怀孕量身定制的护理:解决身体和情感需求,根据女性的偏好量身定制,并考虑到先前死产的原因。
一个在缺乏死因信息的地方,女性只能构建自己的解释,围绕死产的超自然原因实施文化误解。
除了增加心理风险外,众所周知,死产妇女患身体并发症的风险更高,例如产后出血、感染和产科瘘管。世界卫生组织制定的当前产后保健规范标准仅关注“无并发症”的分娩,错过了早期干预以预防、发现和管理身体和心理并发症的机会,并为那些出现分娩并发症(包括死产)的人提供持续的护理,如自愿计划生育服务和下一次怀孕的计划护理[20]].需要采取行动,对现有的产后护理指南进行扩展,为丧亲妇女的持续护理提供最佳实践指导。此外,由于常规的产后护理通常被认为围绕婴儿的护理和免疫接种展开,因此尽管丧亲妇女的需求更复杂,但参与度往往较低。因此,可能需要采取更积极主动的方法,既要促进在这个关键时期与卫生服务的接触,又要提供量身定制的护理,以确保满足这一人群的需求。
除了全世界每年有 190 万妇女死产外,还有 170 万妇女将受到新生儿早期死亡的影响。由于其中许多死亡是可以预防的,因此迫切需要采取行动,改善在整个过程中及时、公平地获得高质量护理的机会,但必须与采取行动相结合,以改善失去亲人的妇女接受的支持性护理,以降低心理发病率。死产女性的经历与早期新生儿死亡有许多相似之处 [21]。这些死亡中有很大一部分发生在卫生机构中,婴儿在出生前或离开卫生机构之前死亡。在这些情况下,婴儿的存在或人格很少被承认,很少被给出名字,大多数从未被介绍给更广泛的家庭,很少举行葬礼等文化活动;因此,他们的出生和死亡都被耻辱所包围[22]。
总结证据是将丧亲妇女和父亲的具体需求纳入全球和国家指导和培训材料的关键第一步。在未来的干预研究中,包括失去亲人的妇女、丈夫、伴侣、家人和更广泛的社区以及卫生工作者,在广泛的背景下将是必不可少的。可能需要进一步的研究来弥合具体的证据差距。例如,在许多情况下,人们对死产对伴侣、儿童和其他家庭成员的影响知之甚少。此外,尽管产科医生和助产士等医护人员是死产前后妇女和家庭临床和支持性护理的主要提供者,但这一角色的高情感要求以及日常职责经常被忽视。需要进一步的研究来了解卫生工作者在死产前后的需求,以及如何最好地将他们的支持纳入全面的丧亲护理服务。
展望未来,该领域现有和新兴的证据可以与最佳实践示例一起使用,以改善为每位丧亲母亲提供支持性护理。迫切需要根据现有证据和广泛的利益相关者磋商,包括联合国合作伙伴、专业协会、一线卫生专业人员和来自高负担环境中的代表性较高的丧亲父母,为死产或新生儿死亡后支持性护理原则提供规范性指导。随着新证据的出现,这些将需要修改。
虽然这个过程正在进行,但越来越明显的是,我们现在有足够的证据来实施三项重要的改变。首先,我们可以提高医疗保健专业人员社区对妇女在死产和新生儿早期死亡后面临的具体问题的认识。其次,现在在所有环境中都可以向照顾受影响妇女的医护人员提供沟通培训和支持。产科医生和助产士的国家和国际组织可以在实现这一目标方面发挥关键作用。第三,可以提高每个国家对死产和新生儿早期死亡的社会认识和理解,例如通过信息和媒体宣传活动。现在实施这些步骤最终可以改善世界各地丧亲母亲的围产期心理健康和福祉。