How to Use the Directory

Welcome to the Miscarriage, Stillbirth, and Infant Loss Directory. This blog is maintained by volunteers to act like a "telephone book" for blogs dealing with the loss of a baby. It is open to anyone who has ever lost a baby in any way - we do not discriminate by age of your baby or circumstance of your loss. If you think you belong here, then we think you belong here.

When you submit your blog, it is manually added to the list, so it may take some time for it to appear on the list. When you submit your information as requested below, it is easier to spot those emails that have been redirected into the spam mail.

Blogs are listed by category of loss. This is to help you find blogs that deal with circumstances that may be similar to yours. That being said, it can be a moving and healing experience to read the blogs of people who's loss is not similar to yours. You are welcome to read any of the blogs listed here.

Though there could be literally thousands of categories of loss, we have created 4 broad categories: before 20 weeks, after 20 weeks, after birth, and medical termination. Please note that most blogs dealing with extreme prematurity are listed in the "after birth" category even though the gestational age might suggest a different category.

As a warning to those feeling particularly fragile, many of the blogs listed here discuss living children or subsequent pregnancies. In the sidebar links, those blogs are usually marked with an asterisk(*). However, the circumstances of individual bloggers will change, and sometimes the listings do not get updated. It is possible to encounter pictures of living children or pregnant bellies on the blogs listed here.

We also have a list of resources (books), online links, and online publications that you may find useful. Scroll all the way to the bottom of the page to see the full listing of links.

We are so sorry the loss of a beloved child has brought you here. We hope that you will find some solace within the community that has gathered.
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C. Submitting titles of helpful reading materials or videos/films
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D. Adding a link to this site from your blog


Friday, November 9, 2007

The Loss of an Infant -- Universal Grief and Transcultural Education

Updated to include the whole article so you don't have to sign in or register.

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.

Link to article


Lori said...

I would love to see the rest of this article but it directs you to Medscape where you need a password to enter? Is it possible to post the rest of the article here?

Lori said...

Silly me... I went back and realized it was free and easy to sign up for Medscape and so I did. I was able to read the rest of the article, which I found very interesting. Thanks for this!

Aurelia said...

The only concern I have with articles like this, is that many of these cultural traditions around infant loss were developed by male religious authorities, and not by women themselves.

I have met many many women who do not want to follow the restrictions their religion or culture puts on them, but cannot freely say so in front of their husbands or family members. Frankly there are so many variations on religious beliefs even within one religion that making any assumptions could be harmful to women in the long run.