A review of literature on supporting parents who have experienced a stillbirth – the death of a baby after 20 weeks in utero until immediately before birth – has concluded with 7 recommendations, all relating to both parents (“it is vital that partners are included”):
- Individualized, genuine and personal care is paramount. For example, parents appreciate when health-care professionals show emotion, empathy and human reactions to their tragic experience.
- The stillbirth of a baby is a human tragedy and an experience that should not be medicalized. It is important to remember that the parents have lost a baby, not simply experienced a medical event.
- Information provided in a forthcoming, step-by-step manner in advance of every procedure and event enables parents to know what to expect and prepare themselves.
- Respect and emotional validation of parents is important and understanding that being the parent of a stillborn baby does not diminish the identity of parenthood.
- Parents may be extremely sensitive to health professional’s communication styles and behavior. Health-care professionals can either inadvertently distress parents with disengaged or poorly worded communication (e.g., by seeming rushed or cold) or can make parents feel nurtured and supported by offering simple gestures of care and empathy. Some examples are physical contact such as holding the mother’s hand and comforting parents with warm and genuine language, for example, saying ‘I’m so sorry’ and reassuring parents that they are not to blame.
- The decision to perform an autopsy or other postdeath investigation is challenging and parents require information to help them decide whether or not they would like such an investigation performed if the cause of death is unknown. When the cause of death is unknown, parents can often be distressed and confused; knowing the cause of death seems to reassure many parents.
- Training for health professionals is important and can better prepare them to offer appropriate support to parents and families affected by stillbirth at every stage of the experience.
The researchers, led by Micah Peters at the University of Adelaide, looked at 10 qualitative studies worldwide. Their article presented extensive guidance for professionals on working with parents after a still birth, quoted in full here.
“Although the psychological and emotional effects of experiencing a stillbirth may ease with time, for some parents, recovery can take many years. The psychological, emotional and health needs of parents do not cease when they return home after the birth of their stillborn baby, as feelings of isolation and abandonment by health-care professionals can persist. The findings that reveal that health-care professionals can potentially ‘overmedicalize’ stillbirth. It is important to parents that health-care professionals demonstrate an appreciation that the stillbirth experience is the birth and death of a loved and cherished baby. The grief of stillbirth is experienced by many parents as strongly as losing a baby who is born and survives a few weeks.
“Parents have identified the importance of health-care professionals’ behavior, and that the emotional attitudes demonstrated by the staff are important factors that determine the subsequent emotions—and potentially the psychological outcomes—of bereaved parents. The findings show that parents appreciate even small signals of sympathy and value when health-care professionals communicate with them in a genuine and personal manner. Health-care professionals who provide this level of care can give parents a sense of security and protection from the confronting experience of stillbirth. Although professionalism and clinical expertise is desired from health-care professionals by parents at all times, clinical demeanors can be interpreted as disengagement and can result in parents feeling isolated, blamed or ignored. Ignoring parents’ emotional states, inferring blame through insensitive or ‘cold’ communication and not attending to both parents’ feelings can cause distress and pain. Health-care professionals may have been trained to hide their emotions from patients; however, parents may appreciate and feel validated when health-care professionals are able to show their feelings of sadness. Parents may also be distressed by health-care professionals who may not have received training to develop the necessary skills in communication to appropriately support parents throughout the experience of stillbirth. Where possible, some parents desire continuity of care by the same health-care professionals, for example, their midwife or obstetrician, throughout the experience of stillbirth, from the initial diagnosis onward. Parents may also appreciate when health-care professionals who provide care leading up to and during a subsequent pregnancy are familiar with their prior stillbirth experiences.
“Throughout the stillbirth experience, to know what to expect and to prepare, both parents desire forthcoming, step-by-step information in advance of every procedure and event. Transparency and repetition may be necessary when communicating to parents as parents may perceive informative messages differently or misinterpret and pick up upon implied connotations. When communicating with and providing information to parents, health-care professionals can validate the parents’ experiences and emotional state by empathetic communication. The findings included in this meta-synthesis demonstrate that some well-meaning health-care professionals may be unaware that certain comments, while intended to be reassuring, may augment parents’ distress and contradict or diminish their experience. For example, a number of findings illustrated that parents often do not appreciate being told that they can ‘have another baby’. To demonstrate the importance of individualized care, however, it should also be understood that other parents do want to know immediately if they can have another baby. Health-care professionals need to be aware of the unique needs of parents and be able to judge the most appropriate timing for providing reassurances of future parenthood.
“In recent years, increased attention has been given to the impact that stillbirth has on fathers, as well as their experiences of the actions of health-care professionals throughout the experience of stillbirth. Stillbirth can be devastating for fathers; however, health-care professionals can tend to discount their loss and not provide the equivalent level of emotional support that may be available to bereaved mothers. It is vital that partners are included in the provision of information. Being able to judge the most appropriate approaches for each parent and couple should be based on the inclusion of both parents in any decision-making processes throughout the stillbirth experience. Parents desire clear guidance from health-care professionals provided in a sensitive and respectful manner. Parents have differing and individual needs and preferences for information provision in terms of the amount of information given and also its timing and complexity. All information should be provided with consideration for parents’ emotional state, both with regard to their ability to take in and process information, as well as their need for structured, clear and emotionally supportive information.
“Parents may wish to investigate the cause of their baby’s death. Having a medical explanation for why their baby was stillborn may be helpful for dispelling feelings of guilt and blame. Parents may have differing preferences regarding when they want this information; some may want immediate explanations, whereas others may desire this information later on. Lack of an explanation can be experienced as dismissive and frustrating for parents and may be perceived as the deliberate withholding of important information. Medical investigation into a cause can be perceived as potentially helpful for parents to understand risks for future pregnancies. Some parents may regret their decision not to have an autopsy, so the option of an autopsy or other investigative procedure to determine cause of death should be sensitively offered at an appropriate time.
“Many parents experience the maternity ward environment, its processes and policies as ill-designed to meet their particular needs as parents experiencing a stillbirth. The distress caused by inappropriate rooming arrangements were frequently identified among the extracted findings; findings suggested that while parents prefer to not be exposed to the cries of other babies and other mothers giving birth, removing the parents of stillborn infants from the maternity environment completely can also be distressing and isolating.”
Peters MDJ, Lisy K, Riitano D, Jordan Z & Aromataris E (2016), Providing meaningful care for families experiencing stillbirth: a meta-synthesis of qualitative evidence, Journal of Perinatology 36.3-9
Photo: Joe Penna. Creative Commons.