Objective: Perinatal loss is a frequent event and the majority of women go on to become pregnant again. These pregnancies after loss have been found to be anxiety-laden and very difficult for women to cope with. Support groups are the only known formal intervention for this population but they are not available in most geographic areas. The broad purpose of this study was to describe the culture of two successful pregnancy after loss support groups, specifically to define the structure, processes, and attributes of the groups, and to gain understanding of the meaning behind the rituals in the groups. The long term objective is to transfer some of the knowledge gained from this study to the development of additional interventions that could be used with all women experiencing a stressful pregnancy after perinatal loss.
Design: Focused Ethnography
Population, Sample, Setting, Years: Those experiencing pregnancy after perinatal loss, specifically two support groups in major metropolitan areas, one in the Northwest and one in the Midwest. Data were collected from seven support group meetings over 6 months, three facilitator interviews, 10 interviews with women, and 76 questionnaires in 1999.
Concepts Studied: fear, anxiety, grief, rituals, structure, process, culture
Methods: Data were collected through participant observation, interviews, and a mailed questionnaire to past and present support group members.
Findings: The participants, primarily women, stated that the support group was “the best therapy” and “a lifeline” for “making it through” the very stressful pregnancies subsequent to perinatal loss. These pregnancies were described as full of anxiety and fear that this baby, too, might die, uncertainty about one’s ability to interpret pregnancy symptoms, feelings of isolation, having few people to talk to who understand what they are going through, and lack of acknowledgement of the baby who died. Several paradoxes inherent in these pregnancies were identified, birth-death, public pregnancy-private pregnancy, acceptance-denial of both babies and fear-hope. These paradoxes were the reasons for seeking out a support group, and through the structure (including rituals, group members, and facilitators) and the processes (talking, encouragement, forming relationships, affirmation and validation feelings, inclusion of dead and in utero babies, and gaining knowledge) of the group, the participants were able to navigate their pregnancies from meeting to meeting. Women reported that they felt safe, understood, normal, supported, and more hopeful because of the support group. They learned ways of coping with their families, friends, care providers, and how to advocate for themselves and their baby. They also learned how to separate their pregnancies and babies so that they could better parent all of their children. The difficulties with the support group included learning additional ways that babies could die, through the other families’ stories, and feeling obligated to be at the meetings to support the other members.
Conclusions: The experiences of these women were that support groups provided what they could not find elsewhere: a safe, normalizing place where the commonly experienced fears and anxieties that surround these pregnancies could be expressed and validated, dead babies can be remembered and grieved , the current pregnancy and baby accepted, and self-confidence can be rebuilt.
Implications: Clinical implications include the need for care providers to recognize the cultural dissonance between the common view of pregnancy as a positive, hopeful time and the experience of these women that pregnancy is a stressful time, filled with dealing with the paradoxes inherent in these pregnancies. Their care should include support of the pregnant family, an environment where the dead baby can be acknowledged and remembered, fears can be validated and calmed, and assistance with separating the current pregnancy and baby from the previous ones.
Future research should include comparison of those pregnant after loss who attend support groups with those who do not, the development and testing of a primary care intervention based on what women found to be useful in support groups, and possibly developing a web-based intervention for women who do not have a support group near by.
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