This first bulletin summarizes a panel presentation at the National Fetal and Infant Mortality Review Program, Third National Conference, held July 16-18, 1998, in Washington, D.C. The panel and this Bulletin were produced in partnership with the Association of the SIDS and Infant Mortality Programs (ASIP). We gratefully acknowledge their contribution in the development of this topic.

INTRODUCTION

Jodi Shaefer, RN, PhD

This bulletin summarizes a panel presentation at the National Fetal and Infant Mortality Review Program, Third National Conference, held July 16-18, 1998, in Washington, D.C. The bulletin reviews cultural traditions of Latino, African American, North America tribal and Muslim families grieving the loss of an infant. It identifies simple strategies health care providers can use to begin the process of providing culturally competent support to them. It also aims to encourage networking and sharing among providers who assist the bereaved.

However, the bulletin only provides a brief overview of the traditions of these four cultural groups. It also reflects the panelists' own unique cultural heritages, as well as their professional experience and expertise. Using this overview alone to predict how any one will respond to loss will probably do more harm then good. No bulletin, book or article can prescribe an appropriate family intervention. In practice, each family has its own unique customs and traditions. The tragedy of the loss of an infant also affects each family member differently. It is essential not to generalize or stereotype using these brief summaries. Providers must take the time to identify and respond to the needs of each family rather than making blanket assumptions based solely on a general outline of cultural traditions.

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OVERVIEW

The United States has long been the destination of many culturally diverse groups. Most new immigrants are coming from Central America, Mexico, the Philippines, Vietnam, China, India, Iran, Germany, Turkey and Egypt. In fact, one out of every thirteen people living in the United States today was not born here. By the year 2000, one out of three Americans will be African American, Latino, Middle Eastern or Asian/Pacific Islander. As the cultural composition of the country evolves, providers must grow and change to meet the needs of these new health care consumers.

Cultural heritage strongly shapes expressions of grief and loss. A cultural group can be defined as people who share a common origin, language, customs, styles of living and a sense of identity. Within each cultural group, other variations of values and beliefs influence an individual's grief response. Some key factors include age of the mourner, family traditions, gender, one's faith foundation, geographic region, educational background, economic status, prior experiences with death and loss and the historical background of the cultural group. Moreover, the degree of assimilation and acculturation will affect an individual's grief response. Assimilation is the cultural absorption of a minority group into the main cultural body. Acculturation is the process of adapting to a new culture, which may result in the loss of traditional customs and ceremonies. The generation (whether an individual has relocated to this country or is a descendent of a settler from abroad) may also make a difference.

Key factors affecting grief response



• Age
  
• Family customs and traditions
  
• Gender
  
• Faith foundation
  
• Geographical region
  
• Education
  
• Economic status
  
• Prior experiences with death and loss
  
• Historical background of the cultural group
  

Adolescence is an example of how age can be a unique factor influencing grief. A teen peer group may more strongly shape a response to loss than the traditions of the family. Adolescents may have other attitudes and beliefs that significantly differ from those of their parents or grandparents. An adolescent may feel more comfortable expressing emotions with friends than family.

Providers need to offer culturally competent support for bereaved families, which includes (Purnell, 1998):

• Being aware of their own cultural traditions and beliefs, giving special thought to those related to death and dying
  
  
• Learning about the cultural beliefs and customs of the community they serve
  
  
• Genuinely appreciating and respecting the cultural diversity of that community
  
  
• Being empathic, flexible and prepared to tailor their care and/or institutional practices to meet the individual needs of bereaved family members

Health care providers tend to view the actions of others through the filters of their own culture. The challenge in these cross-cultural interactions is to be sensitive to the belief system of the grieving family while not imposing one's own beliefs and biases on them. Providers must be able to identify their own cultural expectations and separate them from the needs of the bereaved family. This process takes careful thought and introspection.

One tool providers can use to think about their skill in dealing with culturally diverse families is the continuum of cultural competence adapted from Borkin and others which includes the following phases or steps (Borkin, 1991):

• Overcoming Denial that culture and class differences do exist
  
  
• Resolving Fear of unfamiliar cultural beliefs and values
  
  
• Conquering the belief that the provider's own ethnic group is Superior to others
  
  
• Avoiding Minimization of cultural differences by rationalizing that deep down people are "all the same"
  
  
• Demonstrating Relativism, in which the provider knows and respects cultural differences but has not applied this knowledge to the health care setting
  
  
• Progressing to Empathy, in which the provider understands the client's cultural knowledge, attitudes and beliefs and their relationship to health and has some experience applying this knowledge in the health care setting.
  
  
• Advancing to Cultural Integration, in which the provider understands the client's cultural knowledge, attitudes and beliefs and their relationship to health and has skill and extensive experience applying this knowledge in the health care setting.

Even if providers do not have in-depth knowledge about every culture, they can still be extremely helpful if they approach family members with a supportive, nonjudgmental attitude, ask families what will be important to them in their grief process and then modify care based on the family's input. Families frequently are willing to discuss cultural traditions that may help them cope with the loss. Families will answer gentle, non-invasive questions about their needs. The health care provider can use active listening skills to learn about the culture and provide appropriate support. The most important question is, of course, to ask members of the family about their needs associated with the death.

Questions Providers Can Ask to Assist the Bereaved



• I am so sorry for your loss. How can I help you?
  
• What are your traditions when an infant dies?
  
• Is there someone I can call for you?
  
• Has your family ever had this experience before? How did they handle it?
  
• Did you have a funeral service? Was it helpful?

Providers must also acknowledge that some families have had to deal with racism and other forms of discrimination in the health care system. These experiences can destroy the family's trust in the system and any expectation that providers will act on the family's behalf. Providers may have to increase their efforts to identify and overcome these barriers.

Finally, while cultural traditions play a role in the way a person responds to loss, these beliefs are not static. Especially in today's world, communication technologies, global news broadcasts and extensive migration are creating an environment in which traditional customs are ever changing.

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ABOUT LOSS DURING PREGNANCY AND INFANCY

Loss during pregnancy and infancy encompasses many circumstances: failed infertility treatment, early miscarriage, therapeutic termination, ectopic pregnancy, fetal death, stillbirth, loss after relinquishing a newborn for adoption, neonatal loss, Sudden Infant Death Syndrome (SIDS), birth defects, chronic disease, unintentional injury and homicide. Regardless of cultural background, the death of an infant can create an overwhelming crisis for parents. Grandparents, siblings, other family members and friends may also mourn the loss. Although family members might not remember exactly what providers said at the time of the death, they would certainly recall whether or not the provider displayed a caring attitude and offered comfort. Care and comfort can be shown by taking the time to sit with the family, expressing condolences, explaining what is known about the cause of death and responding to parental needs associated with the death. Parents will take solace in this kindness and remember that support for a lifetime.

While the expression of grief will vary among cultures, the deep sense of loss and sorrow is almost universal. Moreover, the perception of loss may not depend on the length of the pregnancy or the age of the infant. The couple who miscarries or has an ectopic pregnancy might be just as devastated as parents whose older infant died of SIDS. Some initial grief reactions can include shock, disbelief, guilt, blame, anger and hostility, tears and somatic complaints. Some parents report hearing the baby cry or seeing the baby. After stillbirth delivery, mothers may describe feeling fetal movement.

• "When a parent dies, you have lost your past. When a child dies, you have lost your future."
  Schill L. The bereaved parent. New York: Penguin Books, 1977:23

The provider can reinforce that such experiences are common among many grieving parents. Other parents report that they feel they are 'going crazy'. Providers can again reassure the bereaved that other parents spoke and felt the same way. Parent to parent peer support can be very helpful. Many families benefit from culturally relevant infant loss literature in the appropriate language. Providers should also know about and be prepared to link parents to culturally appropriate pastoral care or offer other information, such as available funeral and burial options, as appropriate.

The death of an infant can create stress in the relationship between the parents. Some parents might blame themselves and /or blame each other for the loss. They may feel that they have failed as parents.

• "I often wonder how the death would affect my own personal life if I were the parent."
  "I do burn out at intervals. I get tired, frustrated, withdrawn and have an intense personal sense of loss."
  Chez R. Acute grief and mourning: one obstetrician's experience. Obstetrics and Gynecology. 1995; 85 (6): 1059 - 1061

Parental grief reactions also might vary, leading to a situation where one partner judges the other as not grieving as much. The provider can help by assisting the parents to be aware of the differences in ways individuals grieve and the importance of maintaining communication.

The surviving children, too, may experience sadness, confusion and anger, and may blame themselves for the death. Generally, providers give the information to parents who then explain the death to the children. Parents need to consider the child's age, developmental level and prior experiences with death in explaining the loss. Children often grieve deeply. Parents and extended family members need to support them during this crisis.

Sometimes health care providers say that they feel powerless to 'fix' the grief of family members. In fact, providers are in a very powerful position to model and encourage a salutary response to loss. Providers can teach healthy grieving practices by their own actions - expressing sadness about the death, offering condolences, encouraging parents to talk to each other and advocating to see that parental needs are met. These elementary practices generally cut across many cultural variations in grieving customs.

Finally, while trying to provide therapeutic grief support to parents, some health care providers might also be dealing with their own sadness about the death. Those who are pregnant or parenting infants can sometimes have an intense personal response to the loss, as well. Provider feelings and responses, also in part determined by their own cultural background, may be different from that of the family. Staff discussions can be useful. They provide an opportunity for staff to acknowledge their sorrow and help each other in their efforts to assist bereaved families.

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Go to the next section (Customs and Values that may Affect Latino Grief)