• Hear and recognise parents’ choices
• Support and train staff on providing compassionate care and effective support

The provision of care after stillbirth, particularly in low resource healthcare settings, emphasises the importance of parents and healthcare providers as partners with parents’ choices being heard and recognised while a supported and trained staff provide compassionate care and effective support.

These recommendations were made in an article on "Bereavement care: Its importance and evidence" which was authored by Professor in Community Medicine at the Sri Jayewardenepura University's Medical Sciences Faculty, S. Goonewardena, and published in the Sri Lanka Journal of Perinatal Medicine's Sixth Volume's Second Issue.

Stillbirth is the birth of an infant that has died in the uterus or during delivery (strictly, after at least the first 20 weeks of pregnancy).

The death of a neonate (an infant less than four weeks old) is an extremely traumatic experience for all concerned, but, most especially of course for the parents. In accordance with its definition as recorded in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), grieving is a response to the loss of a loved one in which some individuals display symptoms such as sadness, insomnia (the inability to sleep), anorexia (lack or loss of appetite for food) or weight loss which are characteristic of a major depression disorder (a mood disorder that causes a persistent feeling of sadness and loss of interest). According to the latest data by the United Nations Children's Fund, the global stillbirth rate in 2024 was 14.3 stillbirths per 1,000 total births. The aetiology of neonatal mortality is multi-factorial (M.W. Khan, M. Arbab, M. Murad, M.B. Khan and S. Abdullah's "Study of factors affecting causing low birth weight"). The main direct causes are considered to be preterm birth (babies born alive before 37 weeks of pregnancy are completed), serious infections and asphyxia (when the body is deprived of oxygen, causing unconsciousness or death; suffocation) (M.J. Sankar, C.K. Natarajan, R.R. Das, R. Agarwal, A. Chandrasekaran and V.K. Paul's "When do newborns die? A systematic review of the timing of overall and cause-specific neonatal deaths in developing countries").

Grief (the emotional response to loss, especially caused by a loved one’s death, characterised by intense sorrow, and the experience of which is a process) and bereavement (the condition of being deprived of a loved one through their death, and the period of grief and mourning after a loss) are natural and universal human experiences, which occur before, during, and after a significant person in someone's life dies (J.L. Genevro, T. Marshall and T. Miller's "Report on bereavement and grief research"). However, just as the circumstances surrounding every death are varied, each individual can experience bereavement in different ways, which may reflect the nature of the death, their relationships, their social supports, and cultural context (K.M. Christian, S.M. Aoun and L.J. Breen's "How religious and spiritual beliefs explain prolonged grief disorder symptoms").

Perinatal (relating to the time, usually a number of weeks, immediately before and after birth) bereavement care has become a forgotten issue within the health sector. There is little scientific evidence available to guide caregivers with respect to the implementation of effective interventions to better deal and cope with perinatal bereavement. Nurses, in their role as a fundamental pillar in caregiving, are responsible for these interventions - in which the first step is to recognise and fully explore the best strategies that are available so that they can subsequently be integrated in care processes that avoid complicated grieving (E.P. Pueyo, A.V.G. Alonso, T. Botigué, O. Masot, M.A. Escobar-Bravo and A.L. Santamaría's "Nursing interventions for perinatal bereavement care in neonatal intensive care units (NICUs): A scoping review"). For many years, perinatal bereavement care was beset by controversy until the start of the last Century (20th) when the topic began to be reconsidered. Pueyo et al. shed light on diverse perinatal bereavement care programmes in NICUs and proposed that the active participation of neonatal teams in the design of programmes that offer care and attention in cases of perinatal bereavement could help avoid the risk of triggering pathological (involving or caused by a mental disease) or complicated grieving.

Parents may experience prolonged grief disorder (PGD) (a complex condition that emerges when an individual is unable to transition from acute grief - intense, painful emotions associated with the lack of adaptation to the loss of a loved one - to a more integrated form of mourning [outward expression of grief, including cultural and religious customs surrounding the death, and the process of adapting to life after loss] following the death of a loved one, where some experience persistent, intense grief that interferes with daily functioning and overall well-being, particularly when symptoms such as sadness, tearfulness, longing, possible insomnia, emotional numbness, and identity disruption persist for more than a year) and post-traumatic stress (a mental health condition caused by an extremely stressful or terrifying event — either being part of it or witnessing it, with symptoms including flashbacks, nightmares, severe anxiety and uncontrollable thoughts about the event, and most people who go through traumatic events may have a hard time adjusting and coping, and the symptoms may get worse, last for months or years, and affect their ability to function daily), particularly when they feel isolated and unsupported. High quality care for bereavement may mitigate some negative short- and long-term psychosocial consequences. C. Shakespeare, A. Merriel, D. Bakhbakhi, H. Blencowe, F.M. Boyle, V. Flenady, K. Gold, D. Horey, M. Lynch, T.A. Mills, M.M. Murphy, C. Storey, M. Toolan and D. Siassakos's "The Research of Evidence-based Stillbirth care Principles to Establish global Consensus on respectful Treatment (RESPECT) Study for consensus on global bereavement care after stillbirth" produced eight consensus bereavement care principles, and they are reducing stigma, providing respectful care, shared decision-making, investigating and identifying causes of stillbirth, acknowledging and normalising varied grief responses, providing holistic postnatal (relating to or denoting the period after childbirth) care, providing information on future reproductive health, and facilitating these through the training of healthcare professionals. National and international guidelines are sparse, particularly in low- and middle-income countries (LMICs) where most stillbirths occur and where parents report lower satisfaction with bereavement care (B. Atkins, L. Kindinger, M.P. Mahindra, Z. Moatti and D. Siassakos's "Stillbirth: Prevention and supportive bereavement care"). 

Perinatal bereavement care has unique considerations: parental support, communication, clinical decisions, and the impact on the staff. V. Flenady, A.M. Wojcieszek, P. Middleton, D. Ellwood, J.J. Erwich, M. Coory, T.Y. Khong, R.M. Silver, G.C.S. Smith, F.M. Boyle, J.E. Lawn, H. Blencowe, S.H. Leisher, M.M. Gross, D. Horey, L. Farrales, F. Bloomfield, L. McCowan, S.J. Brown, K.S. Joseph, J. Zeitlin, H.E. Reinebrant, J. Cacciatore, C. Ravaldi, A. Vannacci, J. Cassidy, P. Cassidy, C. Farquhar, E. Wallace, D. Siassakos, A.E.P. Heazell, C. Storey, L. Sadler, S. Petersen, J.F. Frøen and R.L. Goldenberg's "Stillbirths: Recall to action in high-income countries" called for improved bereavement care training and national bereavement care guidelines. The paucity of training is a barrier to the provision of high-quality bereavement care. Time spent seeing, holding, and saying goodbye to a stillborn baby after birth is cherished by many parents and is well documented in high-income countries. If pregnancy following a stillbirth occurs, parents are often anxious, but also very engaged in their care, and therefore, increased surveillance is required, in addition to support and counselling when needed. Those who seek professional help during their grief process can choose between a wide range of support options: for example, grief counselling, individual or group psychotherapy, bereavement groups guided by professionals of the health system, or self-help bereavement groups. Generally, bereavement groups are one of the most common types of professional grief support.

Bereaved individuals are at increased risk for numerous adverse outcomes, including prolonged grief disorder, mood and anxiety disorders, existential distress, decreased work productivity, adverse health behaviours, the neglect of healthcare, cancer, heart disease, suicide, and death. Ideally, bereavement care includes pre-death grief education and support, family-focused psychosocial and spiritual care during the dying process, bereavement services after the death to nurture and sustain surviving family and community members, and assistance with transitioning to community-based support and psychosocial services for those who need long-term professional care (W.G. Lichtenthal, K.E. Roberts, L.A. Donovan, L.J. Breen, S.M. Aoun, S.R. Connor and W.E. Rosa's "Investing in bereavement care as a public health priority"). It also includes support for the workforce, as professional caregivers are affected by repeated losses. Existing community bereavement supports are often inadequate because of deficits in resources and training in evidence-based grief assessments and interventions. The situation is even more dire in LMICs. Furthermore, support that is available might be problematic because of the pervasive lack of grief literacy in many communities (L.J. Breen, D. Kawashima, K. Joy, S. Cadell, D. Roth, A. Chow and M.E. Macdonald's "Grief literacy: A call to action for compassionate communities"). Thus, community-based supports in their present form are insufficient to effectively manage the sequelae of grief as institution-based services taper off.

L. Sallnow, R. Smith, S.H. Ahmedzai, A. Bhadelia, C. Chamberlain, Y. Cong, B. Doble, L. Dullie, R. Durie, E.A. Finkelstein, S. Guglani, M. Hodson, B.S. Husebø, A. Kellehear, C. Kitzinger, F.M. Knaul, S.A. Murray, J. Neuberger, S. O'Mahony, M.R. Rajagopal, S. Russell, E. Sase, K.E. Sleeman, S. Solomon, R. Taylor, M.T. van Furth and K. Wyatt's "Report of the Lancet Commission on the Value of Death: Bringing death back into life" advocated for the development of global compassionate communities to support bereaved individuals. These innovative models are inherently cost-effective because they depend primarily on the community, rather than institutional support, given that the majority of bereaved individuals will adapt to their loss without formal or professional intervention. The Lancet Commission on Global Access to Palliative (of a medicine or form of medical care relieving symptoms without dealing with the cause of the condition) Care and Pain Relief acknowledged the suffering of bereaved family members as a frequently unmet need requiring ongoing support from palliative care clinicians and community health workers, and called for ensuring social support for family caregivers as a complement to the other components in their essential package of palliative care health interventions.

Also, several evidence-based interventions could and should be implemented to reduce the incidence of stillbirth.

The WHO's International Classification of Diseases 11th Edition diagnostic criteria for PGD are as follows: event criterion (history of bereavement following the death of a partner/parent/child/other person close to the bereaved), separation distress (a persistent and pervasive grief response characterised by one of the following two symptoms - longing for the deceased, or the persistent preoccupation of the deceased), intense emotional pain (accompanied by intense emotional pain, for example, sadness, guilt, anger, denial and blame; difficulty accepting the death; feeling that one has lost a part of one’s self; an inability to experience a positive mood; emotional numbness; and difficulty engaging with social or other activities), functional impairment (the disturbance results in significant impairment in personal, family, social, educational, occupational or other important areas of functioning, and if functioning is maintained, it is only through significant additional effort), and cultural and time (the pervasive grief response has persisted for an atypically long period of time following the loss, markedly exceeding expected social, cultural or religious norms for the individual’s culture and context; however, grief responses lasting for less than six months, and for longer periods in some cultural contexts, should not be regarded as meeting this requirement).

The DSM Fifth Edition, Text Revision diagnostic criteria for PGD are as follows: event and time (the death, at least 12 months ago, of a person who was close to the bereaved; for children and adolescents, at least six months ago), separation distress (since the death, the development of a persistent grief response characterised by one or both of the following two symptoms, which has/have been present most days to a clinically significant degree, and in addition, the symptom/s has/have occurred nearly every day for at least the last month - intense yearning/longing for the deceased person, or preoccupation with thoughts or memories of the deceased person, and in children and adolescents, preoccupation may focus on the circumstances of the death), cognitive, emotional and behavioural symptoms (since the death, at least three of the following eight symptoms have been present most days to a clinically significant degree, and in addition, the symptoms have occurred nearly every day for at least the last month - identity disruption [e.g., feeling that a part of oneself has died] since the death; marked sense of disbelief about the death; the avoidance of reminders that the person is dead [in children and adolescents, may be characterised by efforts to avoid reminders]; intense emotional pain [e.g., anger, bitterness, sorrow] related to the death; difficulty reintegrating into one’s relationships and activities after the death [e.g., problems engaging with friends, pursuing interests or planning for the future]; emotional numbness [absence or marked reduction of emotional experience] as a result of the death; feeling that life is meaningless as a result of the death; and intense loneliness as a result of the death), functional impairment (the disturbance causes clinically significant distress or impairment in social, occupational or other important areas of functioning), cultural (the duration and severity of the bereavement reaction clearly exceeds expected social, cultural or religious norms for the individual’s culture and context), and relation to other mental disorders (the symptoms are not better explained by major depressive disorder, posttraumatic stress disorder or another mental disorder, or attributable to the physiological effects of a substance [e.g., medication, alcohol] or another medical condition).