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The Loss of an Infant -- Universal Grief and Transcultural Education CE
Maureen O'Reilly, RNC, APNP Disclosures
Universal Grief and Cultural Funerals
Nurses who work in neonatal intensive care units (NICUs) may believe that dealing with the loss of an infant improved immensely in the late 20th century -- suddenly, parents were encouraged to hold their infant at death, given hair locks to keep, and given pictures to share with family. Remembering that parents in the 18th and 19th centuries dealt with much more frequent infant loss, Marylouise Martin, MSN, RNC, Clinical Nurse Specialist, McLeod Regional Medical Center, Florence, South Carolina, pointed to diaries, letters, and postmortem pictures those long-ago parents used to comfort themselves. Martin's presentation on the "Transcultural Perspective of Perinatal Loss and Bereavement"[1] made it plain: not much in parental grief has changed. NICUs, however, have continued to expand their understanding of how to work with grieving parents of many ethnicities and religions as they express their culture while mourning in the 21st century.
Martin's summary may have begun with history, but her take on the transcultural outlook on dealing with grieving parents was thoroughly modern. Developing cultural proficiency assists nurses in dealing with families of varying ethnocultural and religious backgrounds during their grief, and has 5 elements: (1) knowing your own cultural values, (2) developing cultural knowledge, (3) awareness and acceptance of differences, (4) understanding the dynamics of those differences, and (5) adapting practice to fit the family's cultural background. Callister wrote that, "Support received by professionals is critical in the long-term adjustment of childbearing families coping with perinatal loss."[2] Cultural proficiency forms the basis of such support.
Mourning Rites and Culture
Caregivers need to know basics of cultural traditions -- that Jewish families bury their dead within 24 hours and the Old Amish will not accept photographs of the infant. Beliefs about the afterlife may also affect a family member's actions at this time -- Muslims may see death as a natural stage of life, Native American mourners may see death as another step in life when the spirit must be released, and African Americans may believe death is not the end and have a fervent belief of reunion in Heaven with their lost child.
What is "normal" in funeral rites varies widely also. Asian-Chinese families minimize recognition of a child's death because formalities are reserved for those over 18, as "adults." American Christians may have a full funeral following "anointing of the sick" rites and baptism predeath. Roman Catholics will plan a funeral where the body is on view and eschew cremation in favor of burial. Muslims prefer to have the body washed in running water and wrapped in white cloth, with the body placed in-ground, positioned on its right side and facing Mecca.
The outward expression of grief after the loss of a child is directly tied to the family's cultural backdrop. Martin pointed out that Hispanic/Latino families, especially women, may be vocal in grief, and display "ataque de nervios," with shaking and seizure-like activity accepted as normal within their culture but upsetting to culturally unaware caregivers observing the event. On the other hand, Latino fathers may appear especially stoic, as part of the tradition known as "machismo," and seem uncaring to onlookers, while actually being deeply affected.
African Americans may delay funeral and burial until distant family members arrive, in the belief that all must have the chance to mourn directly, and vocal grief is acceptable, especially during church services and at the graveside. Muslim families accept tears at death, and dignity at interment is highly valued, with the family walking behind the body on its way to the mosque. Amish families prize privacy in their grief and may discuss their loss minimally in public.
Developing Culturally Proficient Caregivers
Most labor and delivery units and NICUs currently offer "remembrances" to families after a perinatal loss, including items such as the identification bracelet, photographs, hair locks, clothing worn by the infant, footprints and handprints, and ultrasound prints. Martin emphasized that, even with well-developed cultural awareness, every family should be asked about the items that may have meaning to them and have their wishes met on an individual basis.
As families acculturate in the United States, it's not uncommon for them to incorporate at least some changes that are acceptable within their own culture. As Davies reported in 2004, traditional perspectives on grief, emphasizing separateness, are being transformed into a new stress on "connectedness" and the mourner's role in the social world.[3] Remembrance items and their restrictions due to family culture may apply in the most general manner, but astute caregivers ask parents to voice their needs -- as Clements and colleagues noted, "Death, grief, and bereavement are very personal experiences."[4]
Nursing units dealing with perinatal loss have several avenues open to them in developing transcultural awareness of grief practices. First, educators may make available brief summaries, such as current articles dealing with common cultural beliefs, for staff to read and use in practice. A more in-depth summary of varied beliefs is available in texts such as Death and Bereavement Across Cultures[5] or Ethnic Variations in Dying, Death, and Grief: Diversity in Universality,[6] which includes facts such as a withdrawal from community life for up to 7 years may be "normal" for the Egyptian mother, following the loss of a child.
In a further step toward integrating transcultural awareness, Martin has developed a Transcultural Training Program, and she encouraged listeners to consider this in their own practice areas. The program provides basic cultural education and methods for nurses to incorporate cultural assessment and proficiency into their daily work. Capitulo advocated for online grief support groups, where the theme was "shared metamorphosis," allowing transcendence of cultural beliefs and the sharing of remembrance and memories.[7] Although not all family members will have access to the Internet to join such groups, it's clear such methods offer hope and support to geographically or socially isolated mourners and are worth the effort of caregivers to offer to all cultural perspectives.
When loss occurs in a family, the ability to find meaning in the death and involve family members in rituals and mourning offers comfort and support to parents, siblings, and grandparents. Martin offered an overview of specific practices found in a wide array of ethnic and religious backgrounds, with the caveat to always remember the individual's wishes. A culturally proficient caregiver offers respect for the family's beliefs and dignity for the dead.
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