- Email: [email protected]
A Baby Has Died: The Impact of Perinatal Loss on Family Social Networks
A Baby Has Died: The Impact of Perinatal Loss on Family Social Networks Francine de Montigny, RN, MSclnf, Line Beaudet, RN, MSclnf, Louise Dumas, RN, MSlnf, PhD
=Objectives:
To describe the impact of a baby’s death on the family‘s social network and to design nursing interventions to support families and their networks. Design: Descriptive, with a qualitative approach. Setting: An urban area of western Quebec. Participants: Twenty parents (mothers and fathers) who had experienced a perinatal loss (abortion, miscarriage, in-utero death, stillbirth, or death of a newborn within the 1st week of life) within the last 6 years. Main Outcome Measures: Self-administered questionnaires developed by the authors were completed by each parent. Results: Family members’ quality and quantity of ties with their network were profoundly affected by the perinatal loss. Some families experienced reinforcement of their bonds with their social network, but most suffered permanent losses of relationships with friends, colleagues, or extended family members. Conclusions: The quality and quantity of ties with one’s network are associated with improved health status and life satisfaction. Considering the changes participants noted in their relationships within their network, further studies of the impact of these changes on family members’ grieving process would be useful to guide nursing interventions. JOGNN, 28, 15 1-1 56; 1999. Accepted: M a y 1998
A child’s death is a tragic event that has an impact on all family members. To everyone involved, a child’s death seems unfair and senseless. March/April1999
When the death occurs during pregnancy or childbirth, parents are stunned, because death is not the expected outcome of pregnancy. In many ways, life will never be the same for these families. Past research has helped in gaining insight on the changes the immediate family will face (de Montigny & Beaudet, 1997; de Montigny, Beaudet, & Dumas, 1996a; Feeley & Gottlieb, 1989; Schwab, 1992). For example, nurses are now aware that in the months after the perinatal death family members must reorganize themselves and devise new modes of functioning. A study with 80 bereaved family members by de Montigny and Beaudet (1997) highlighted how rules and family boundaries need to be negotiated again after the death of a child. The same study described how family members’ communication is affected so deeply that parents and siblings may become unable to talk about the deceased child. Rupture of communication often results. Schwab (1992) has written about the disruption in couples’ sexual relationships after the death of a child. De Montigny et al. (1996b) observed that when a family encounters severe difficulty in one dimension of family functioning it can expect to have difficulties in other areas because of the interrelatedness among the dimensions (communication, feeling response, behavior control, problem resolution, affective implication, and role distribution). What has been discussed far less is the impact of an infant’s death on the family’s social network. We know that the quality and quantity of ties an individual holds with his or her network are associated with improved health status and life satisfaction (Hanson & Boyd, 1996). Therefore, it is crucial to find out what happens after a perinatal death
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-
TABLE 1.
Trpes of Perinatal Losses
l’arer1ts
Abortions
Miscarriages
In utero >20 weeks
Stillbirths
Neonatal
Total
Mothers
2
12
5
6
1
Fathers
2
3
1
1
26 losses (14 mothers) 7 losses (6 fathers)
to the family’s relationships with extended family members, colleagues, friends, and health care professionals. Some researchers, for example, de Frain et al. (1992), have reported that grandparents grieve for their grandchild and also for their child. Grandparents stated that they felt helpless because they were unable to protect their child from such pain and perceived themselves as having failed as parents (de Frain, Jakub, & Mendoza, 1992). What we do not know is how parents themselves perceive the effect of their child’s death on their relationships with their own parents and kin. We also need to know what nursing interventions can help promote the quality and quantity of support from the family’s social network. These questions will be the focus of this article.
centers, and publicity in newspapers and medical clinics. Twenty bereaved parents participated, 14 mothers and 6 fathers. Of the 20 respondents, all were white, Frenchspeaking, and middle class. Thirty percent (6 )had experienced more than one perinatal loss, and 2 mothers had experienced four losses. Only 1 had a neonatal loss (see Table 1). Limits of this research are twofold. The use of a volunteer sample may have led to the recruitment of parents who were evolving with more ease or with more difficulty than the majority of bereaved parents; this could not be ascertained. Second, similar to what was reported by de Frain (1991), mothers participated in greater numbers than fathers.
Data Collection
Method A descriptive study was conducted, leading to the development of a frame of reference for nursing interventions. The variables under study were related to the external family structure (Wright & Leahey, 1984, 1995). Thus, relationships with members of the social network, extended family members, friends, colleagues, and health care professionals, were examined. For this purpose, the social network was defined as all the persons identified by family members as likely to give or having given them support in the form of material help, physical assistance, financial help, or intimate interactions. Perinatal death was defined as a death occurring during pregnancy (miscarriage, abortion, or in-utero death), the birth process (stillbirth),or the 1st week of life (neonatal death).
Sample A convenience sample of volunteer parents was drawn from an urban, predominantly French-speaking population of western Quebec. Participation was offered to all bereaved parents whose experience of perinatal death had occurred within the last 6 years. Participants were recruited through hospital personnel, community 1.52 JOGNN
Data were collected over a 3-month period. A questionnaire was developed by the researchers for this study; it consisted of 23 open-ended questions concerning the impact of the death of a child on the family’s functioning and structure (see Table 2). The content of this instru-
-
TABLE 2.
Key Questions From the Questionnaire Can you tell us how you have experienced your baby’s death? How would you describe the impact of this event on your relationships with your family? Your friends? Your colleagues? Your work? Your leisure? Your relationships with health care professionals? What helped you through this experience? What didn’t help you? What support was available to you? What support did you ask for? What support did you receive? What other type of support would you have liked to receive?
Volume 28, Number 2
ment was validated by two clinical nurse specialists before the study. Fifty questionnaires were distributed with preaddressed, prestamped envelopes, and 20 were returned. Both parents were asked to complete the questionnaire separately. Participants were instructed that questions could be left unanswered if too painful to answer or if they were not interested in confiding on this particular matter.
Data Analysis Pen and paper content analysis of written questionnaires was performed. The small number of parents (20) who answered the questionnaires permitted an in-depth analysis leading to the emergence of categories and subcategories (Deslauriers, 1991; Dubouloz, 1996; L’Ecuyer, 1990; Miles & Huberman, 1984; Tesh, 1990). These emerging categories result from the “deconstruction” of the written information given by the parents into small units that made sense by themselves (units of sense) (Bardin, 1991; Dubouloz, 1996). These units are then coded to serve as guide marks in the successive reorganizations of the material into a meaningful model. This method is said to be “open” since the categories are inductive, coming into light during the analysis process and not being imposed by a n a priori model. We were trying to understand what the parents were saying about their intimate experience; according to Glaser and Strauss (1967) this information should then emerge essentially from the words the parents used to describe their own experiences. Two coders agreed on all categories and subcategories and on the classification of the units of sense into each category (Glaser & Strauss, 1967; Lincoln & Guba, 1985). This permitted accurate description of beliefs, attitudes, values, and ideas expressed by the parents that could serve as a frame of reference for future nursing interventions with bereaved parents.
Results The analysis allowed the research team to develop an understanding of the long-lasting impact of an infant’s death on the variables studied. In fact, the results demonstrate that this life event can alter permanently one’s relationships with members of the network, particularly those described below.
Relationships with Extended Family Members Extended family members often feel uncomfortable and unsure of how to react to parental grieving. Parents in this study reported that this uneasiness led to unsupportive reactions, such as avoiding talking about the baby and making comments that diminished the intensity of the loss. Examples include the following: “It
MarchlAprill999
was better this way, maybe the baby was not normal” and “You are young, you can have another one.” Although often well-meant, these remarks were painful for the parents. To avoid being hurt, parents tended to isolate themselves from extended family members and to refrain from communicating their needs, expressing their feelings, or asking and receiving support. Thus, a disruption of family ties related to mutual misunderstanding was frequently reported. Bereaved parents were unaware that grandparents were at risk of going through a grieving process, especially if they had themselves gone through such a loss in their own lives. Indeed, some couples wrote that their experience with perinatal death served to reveal their own parents’ experience with such a loss. For some parents, relationships with extended family members were improved or reinforced. These parents realized that their family could be there for them in times of ordeal; they felt respected in their grief and free to express a variety of emotions. They then were able to respect and accept different reactions from their extended family members. As a mother reported, “My mom was really helpful to me, she was always there to listen; we saw more of each other for a time. My motherin-law didn’t say much, but we knew she cared by the little things she did for us.”
Relationships With Colleagues and Friends Parents reported similar patterns of behavior by colleagues and friends, who tended to be present the first few days but expected things to get back to “normal” quickly. Colleagues and friends centered their attention on the mother’s welfare, giving the father little opportunities to share his grief. Fathers were asked “how is your wife” and received little personal attention. Parents reported becoming unable to communicate their needs and express their feelings to colleagues and friends. Colleagues and friends also tended to adopt unsupportive behaviors similar to those of grandparents. They rarely listened to the parents’ talk about their suffering and either changed the subject or acted as if they had not heard what was said. Parents reported the following: “YOU learn how to express yourself, but you also learn that not everyone can hear your pain”; “You need to be recognized as a parent, but where do you go to get that recognition when no one knew your baby”; “Everything is okay with my friends, as long as I don’t talk about my baby. When I do, they look away and change the subject. What am I supposed to do? I need to talk!” Often, parents confided that they refrained from seeing friends to avoid their uneasiness. For parents who experienced miscarriage, estrangement from friends was related to social biases that miscarriage is not “a real loss.” Eventually, many parents abandoned some or most social relationships and their network weakened.
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Friendships that were maintained were said to be particularly “nourishing.” Parents wrote that their loss gave them the opportunity to discover who their true friends were, who would be there in times of need, and whom they could count on.
P e r i n a t a l loss can alter permanently parents’ relationships with members of their network .
Relationships WithHealth Care Professionals Some parents found that health care professionals had. supported them well through their loss. In some cases, they realized that their confidence in themselves had been strenghtened by the professional’s intervention. One intervention that parents particularly appreciated was being informed by nurses of the value and importance of rituals in coping with their grief. Some parents faced health care professionals who were uneasy in dealing with them and who tried to avoid them. Some health care professionals left parents alone while they were giving birth or asked them to decide quickly about what to do with the baby’s body. Parents often felt rushed to make important decisions with little information regarding the consequences of their choices. Anger and blame towards health care professionals were also common. When parents felt unsupported, they tended to use a different physician and hospital with their subsequent pregnancies. One example of the absence of support is found in this study: A father, trying to find a psychologist for his wife and himself, was told by a mental health professional, “I will only see your wife, she’s the one who lost the baby.” Another told him, “It’s normal to feel depressed. Come back to see me in 6 months if you feel the same.” This father felt that his right to grieve was unrecognized by mental health professionals, and he was frustrated and hurt by these experiences. Following the loss of their baby, parents were offered much advice, often contradictory, about having another child. Generally, parents agreed that health care professionals should not tell them what to do, in terms of having a baby or waiting, because, as one mother said, “nobody really knows our lives.” All in all, parents wrote that they would like to be informed about the pros and cons of trying to have another baby right away versus waiting a couple of years, but the decision itself should be entirely theirs, and others should not judge the parents for their decision. Parents who have lost a baby tend not to join bereaved parents’ groups unless they are specifically for those who have had a perinatal death. Parents said, “I didn’t feel at ease being with parents who had lost an older child. My loss didn’t seem as important as theirs,” and “It felt awkward being with other parents. I couln’t share souvenirs, just dreams. It didn’t seem much.” This last statement illustrates how parents themselves have difficulty in society validating their perinatal loss. In summary, family members’ quality and quantity 254 JOG”
of ties with their social network were profoundly affected by the perinatal loss. Although some families experienced reinforcement of their bonds with their social network, most suffered permanent losses of relationships with friends, colleagues, or extended family members, leaving them more vulnerable. We had expected differences in the disruption of ties with the network to depend on the type of perinatal loss (for example, miscarriage versus stillbirth); comments from parents in this study did not confirm such a difference.
Nursing Implications The need is apparent for specific nursing interventions that prevent disruption of the bereaved families’ social networks. Our clinical experience with bereaved families has brought us to believe that family members possess the strengths and capacities to maintain or restore a solid and nourishing network. Nurses can make a difference in enhancing the quality and quantity of support that bereaved parents receive from their networks. We propose the following interventions.
Knowing and Sharing Information 1. Inform families about reactions they can expect (avoidance, grief, uneasiness, sadness, etc.) from extended family, friends, and health care professionals. 2. Explain to them the reasons underlining these reactions, such as a person’s personal discomfort
N u r s e s can make a difference by knowing what i s happening within these families, offering various forms of support, maintaining families’ beliefs in their strengths and capacities, and enabling families to rebuild their networks.
Volume 28, Number 2
in dealing with the subject of death, past experiences, or inability to communicate support. 3 . Explain, in simple terms, the legal procedures regarding body disposal and hospital policies and procedures. 4. Give parents complete and unbiased information about having another pregnancy. 5. Inform families of available resources in the community, such as bereaved parent groups, clinical nurse specialists, psychologists, etc.
Supporting Families and Enabling Them to Rebuild Their Networks 1. Allow family members and visitors opportunities to express how they feel about this baby’s death by questioning and reflecting on the meaning of this loss for this family. 2. Encourage families to bring up the subject of their baby’s death with their extended family, friends, and health care professionals in order to facilitate communication. 3 . Help families clarify and clearly express their needs and expectations to extended family, friends, and health care professionals. 4. Suggest how the parents can express their needs to others in a nonthreatening manner. 5. Help parents express their support to each other; for example, by asking each parent how he/she wishes to be supported. 6. Express your own feelings toward this family’s experience. 7. Give parents the time and privacy to make their decisions. 8. Identify with the family ways to maintain or reestablish contact with others, such as organizing a ritual or a family reunion, expressing their feelings, etc.
Offering Spiritual Support and Maintaining Families’ Beliefs in Their Strengths and Capacities 1. Emphasize the family’s strengths and uniqueness. 2. Explore how family members have gone through crises before, what was helpful then, and what could be useful now. 3 . Assess family members’ religious and cultural beliefs, particularly beliefs about life and death and after-life. 4. Explain the importance of rituals in grief resolution, since rituals convey the reality and importance of the family’s loss to the community. 5. Suggest rituals, such as holding a memorial service, if desired. 6. Explore ways to perpetuate their baby’s memory and to give him or her a place in the family his-
MarchlApril1999
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society's failure to recognize and validate a perinatal loss as real and significant for the family contributes to disruption of the family’s network.
tory, such as keeping a scrapbook of mementoes or a journal, planting a tree, naming the baby, contributing to a fund in the baby’s name, etc. 7. Explain alternative methods of body disposal.
Conclusions and Recommendations Perinatal loss causes great upheaval in couples’ relationships (de Montigny & Beaudet, 1997; Feeley & Gottlieb, 1988-1989; Wallerstedt & Higgins, 1996). The current study has shown the disorganization parents experience in their relationships after a perinatal death. Considering the changes participants noted in their relationships with their network, further investigation of the impact of these changes on family members’ grieving process would be useful to guide nursing interventions. It also might be useful to compare the impact of different types of perinatal losses on family members’ relationships with the network. Finally, exploring the impact of the suggested nursing interventions on the maintenance or reinforcement of the quality of the network would be highly desirable.
Acknowledgments This study was funded by the Regional Regie of Health and Welfare Services of Quebec Outaouais (RSSSO) and by the Editions du Renouveau Pedagogique, Inc., City St.-Laurent, Quebec, Canada.
REFERENCES Bardin, L. (1991).L’analyse de contenu. Paris: Presses Universitaires de France. de Frain, J. (1991). Learning about grief from normal families: SIDS, stillbirth, and miscarriage. Journal of Marital and Family Therapy. 17,(3),215-232. de Frain, J. Jakub, D. K, & Mendoza B. L. (1992). The psychological effects of sudden infant death on grandmothers and grandfathers. Omega. 24,(3), 165-1 82. de Montigny, F., & Beaudet, L. (1997). Lorsque la vie tclate: impact de la mort d’un enfant sur la famille. St-Laurent, Quebec: Editions du Renouveau Ptdagogique Inc. de Montigny, F., Beaudet, & Dumas, L. (1996a).La mort d’un enfant: description de l’irnpact sur la famille et dabora-
JOGNN 155
tion d’une intervention syste‘mique. Research report submitted to the Regional Regie of Health and Welfare Services of Quebec (Outaouais),Hull. De Montigny, F., Beaudet, L., & Dumas, L. (1996b). Ripercussions de la mort d’un enfant sur la famille. Infirmiere Canadienne. 92,(10), 39-42. Deslauriers, J. P. (1991). Recherche qualitative: guide pratique. Montrkal: McGraw Hill. Dubouloz, C. J. (1996). Analyse des donnees en recherche qualitative. In M. F. Fortin (Ed.), Processus de la recherche. Montreal: McGraw Hill. Feeley, N., & Gottlieb, L. (1988-1989). Parents’ coping and communication following their infant’s death. Omega. 19,51-58. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine. Hanson, S. M. H., & Boyd, S. T. (1996). Family health care nursing. Philadelphia: F.A. Davis Co. L’Ecuyer, R. (1990). Mkthodologie de l’analyse de‘veloppementale de contenu: Mkthode GPS et estime de soi. Sillery, Quebec: Presses de I’Universitk du Quebec. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills: Sage. Miles, M. B., & Huberman, A. M. (1984).Qualitative data analysis: A source book of new methods. Beverly Hills: Sage.
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Schwab, R. (1992). Effects of a child’s death on the marital relationship: A preliminary study. Death Studies. 2 6, 141-154. Tesh, R. (1990). Qualitative research: Analysis of types and software tools. New York: Falmer. Wallerstedt, C. & Higgins, P. (1996). Facilitating perinatal grief between the mother and the father. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 25, 389394. Wright, L. M., & Leahey, M. (1984). Nurses and families. Philadelphia: F. A. Davis Co. Wright, L. M., & Leahey, M. (1995). L’infirmiere et la famille. V. St-Laurent, Qukbec: ERPI.
Francine de Montigny is a professor in the Department ofNursing Sciences, University of Quebec in Hull, Canada. Line Beaudet is a clinical nurse specialist, Neurologic Disorder Clinic, Sir Mortimer B. Davis Jewish General Hospital, Quebec, Canada. Louise Dumas is a professor, Department of Nursing Sciences, University of Quebec in Hull, Quebec, Canada. Address for correspondence: Francine de Montigny, RN, MScInb Professor of Nursing, Department of Nursing Science, University ofQuebecin Hull, C.P. 1250, Succ. B, Hull, Quebec, J8X-3X7, Canada.
Volume 28, Number 2
=Objectives:
To describe the impact of a baby’s death on the family‘s social network and to design nursing interventions to support families and their networks. Design: Descriptive, with a qualitative approach. Setting: An urban area of western Quebec. Participants: Twenty parents (mothers and fathers) who had experienced a perinatal loss (abortion, miscarriage, in-utero death, stillbirth, or death of a newborn within the 1st week of life) within the last 6 years. Main Outcome Measures: Self-administered questionnaires developed by the authors were completed by each parent. Results: Family members’ quality and quantity of ties with their network were profoundly affected by the perinatal loss. Some families experienced reinforcement of their bonds with their social network, but most suffered permanent losses of relationships with friends, colleagues, or extended family members. Conclusions: The quality and quantity of ties with one’s network are associated with improved health status and life satisfaction. Considering the changes participants noted in their relationships within their network, further studies of the impact of these changes on family members’ grieving process would be useful to guide nursing interventions. JOGNN, 28, 15 1-1 56; 1999. Accepted: M a y 1998
A child’s death is a tragic event that has an impact on all family members. To everyone involved, a child’s death seems unfair and senseless. March/April1999
When the death occurs during pregnancy or childbirth, parents are stunned, because death is not the expected outcome of pregnancy. In many ways, life will never be the same for these families. Past research has helped in gaining insight on the changes the immediate family will face (de Montigny & Beaudet, 1997; de Montigny, Beaudet, & Dumas, 1996a; Feeley & Gottlieb, 1989; Schwab, 1992). For example, nurses are now aware that in the months after the perinatal death family members must reorganize themselves and devise new modes of functioning. A study with 80 bereaved family members by de Montigny and Beaudet (1997) highlighted how rules and family boundaries need to be negotiated again after the death of a child. The same study described how family members’ communication is affected so deeply that parents and siblings may become unable to talk about the deceased child. Rupture of communication often results. Schwab (1992) has written about the disruption in couples’ sexual relationships after the death of a child. De Montigny et al. (1996b) observed that when a family encounters severe difficulty in one dimension of family functioning it can expect to have difficulties in other areas because of the interrelatedness among the dimensions (communication, feeling response, behavior control, problem resolution, affective implication, and role distribution). What has been discussed far less is the impact of an infant’s death on the family’s social network. We know that the quality and quantity of ties an individual holds with his or her network are associated with improved health status and life satisfaction (Hanson & Boyd, 1996). Therefore, it is crucial to find out what happens after a perinatal death
JOG”
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-
TABLE 1.
Trpes of Perinatal Losses
l’arer1ts
Abortions
Miscarriages
In utero >20 weeks
Stillbirths
Neonatal
Total
Mothers
2
12
5
6
1
Fathers
2
3
1
1
26 losses (14 mothers) 7 losses (6 fathers)
to the family’s relationships with extended family members, colleagues, friends, and health care professionals. Some researchers, for example, de Frain et al. (1992), have reported that grandparents grieve for their grandchild and also for their child. Grandparents stated that they felt helpless because they were unable to protect their child from such pain and perceived themselves as having failed as parents (de Frain, Jakub, & Mendoza, 1992). What we do not know is how parents themselves perceive the effect of their child’s death on their relationships with their own parents and kin. We also need to know what nursing interventions can help promote the quality and quantity of support from the family’s social network. These questions will be the focus of this article.
centers, and publicity in newspapers and medical clinics. Twenty bereaved parents participated, 14 mothers and 6 fathers. Of the 20 respondents, all were white, Frenchspeaking, and middle class. Thirty percent (6 )had experienced more than one perinatal loss, and 2 mothers had experienced four losses. Only 1 had a neonatal loss (see Table 1). Limits of this research are twofold. The use of a volunteer sample may have led to the recruitment of parents who were evolving with more ease or with more difficulty than the majority of bereaved parents; this could not be ascertained. Second, similar to what was reported by de Frain (1991), mothers participated in greater numbers than fathers.
Data Collection
Method A descriptive study was conducted, leading to the development of a frame of reference for nursing interventions. The variables under study were related to the external family structure (Wright & Leahey, 1984, 1995). Thus, relationships with members of the social network, extended family members, friends, colleagues, and health care professionals, were examined. For this purpose, the social network was defined as all the persons identified by family members as likely to give or having given them support in the form of material help, physical assistance, financial help, or intimate interactions. Perinatal death was defined as a death occurring during pregnancy (miscarriage, abortion, or in-utero death), the birth process (stillbirth),or the 1st week of life (neonatal death).
Sample A convenience sample of volunteer parents was drawn from an urban, predominantly French-speaking population of western Quebec. Participation was offered to all bereaved parents whose experience of perinatal death had occurred within the last 6 years. Participants were recruited through hospital personnel, community 1.52 JOGNN
Data were collected over a 3-month period. A questionnaire was developed by the researchers for this study; it consisted of 23 open-ended questions concerning the impact of the death of a child on the family’s functioning and structure (see Table 2). The content of this instru-
-
TABLE 2.
Key Questions From the Questionnaire Can you tell us how you have experienced your baby’s death? How would you describe the impact of this event on your relationships with your family? Your friends? Your colleagues? Your work? Your leisure? Your relationships with health care professionals? What helped you through this experience? What didn’t help you? What support was available to you? What support did you ask for? What support did you receive? What other type of support would you have liked to receive?
Volume 28, Number 2
ment was validated by two clinical nurse specialists before the study. Fifty questionnaires were distributed with preaddressed, prestamped envelopes, and 20 were returned. Both parents were asked to complete the questionnaire separately. Participants were instructed that questions could be left unanswered if too painful to answer or if they were not interested in confiding on this particular matter.
Data Analysis Pen and paper content analysis of written questionnaires was performed. The small number of parents (20) who answered the questionnaires permitted an in-depth analysis leading to the emergence of categories and subcategories (Deslauriers, 1991; Dubouloz, 1996; L’Ecuyer, 1990; Miles & Huberman, 1984; Tesh, 1990). These emerging categories result from the “deconstruction” of the written information given by the parents into small units that made sense by themselves (units of sense) (Bardin, 1991; Dubouloz, 1996). These units are then coded to serve as guide marks in the successive reorganizations of the material into a meaningful model. This method is said to be “open” since the categories are inductive, coming into light during the analysis process and not being imposed by a n a priori model. We were trying to understand what the parents were saying about their intimate experience; according to Glaser and Strauss (1967) this information should then emerge essentially from the words the parents used to describe their own experiences. Two coders agreed on all categories and subcategories and on the classification of the units of sense into each category (Glaser & Strauss, 1967; Lincoln & Guba, 1985). This permitted accurate description of beliefs, attitudes, values, and ideas expressed by the parents that could serve as a frame of reference for future nursing interventions with bereaved parents.
Results The analysis allowed the research team to develop an understanding of the long-lasting impact of an infant’s death on the variables studied. In fact, the results demonstrate that this life event can alter permanently one’s relationships with members of the network, particularly those described below.
Relationships with Extended Family Members Extended family members often feel uncomfortable and unsure of how to react to parental grieving. Parents in this study reported that this uneasiness led to unsupportive reactions, such as avoiding talking about the baby and making comments that diminished the intensity of the loss. Examples include the following: “It
MarchlAprill999
was better this way, maybe the baby was not normal” and “You are young, you can have another one.” Although often well-meant, these remarks were painful for the parents. To avoid being hurt, parents tended to isolate themselves from extended family members and to refrain from communicating their needs, expressing their feelings, or asking and receiving support. Thus, a disruption of family ties related to mutual misunderstanding was frequently reported. Bereaved parents were unaware that grandparents were at risk of going through a grieving process, especially if they had themselves gone through such a loss in their own lives. Indeed, some couples wrote that their experience with perinatal death served to reveal their own parents’ experience with such a loss. For some parents, relationships with extended family members were improved or reinforced. These parents realized that their family could be there for them in times of ordeal; they felt respected in their grief and free to express a variety of emotions. They then were able to respect and accept different reactions from their extended family members. As a mother reported, “My mom was really helpful to me, she was always there to listen; we saw more of each other for a time. My motherin-law didn’t say much, but we knew she cared by the little things she did for us.”
Relationships With Colleagues and Friends Parents reported similar patterns of behavior by colleagues and friends, who tended to be present the first few days but expected things to get back to “normal” quickly. Colleagues and friends centered their attention on the mother’s welfare, giving the father little opportunities to share his grief. Fathers were asked “how is your wife” and received little personal attention. Parents reported becoming unable to communicate their needs and express their feelings to colleagues and friends. Colleagues and friends also tended to adopt unsupportive behaviors similar to those of grandparents. They rarely listened to the parents’ talk about their suffering and either changed the subject or acted as if they had not heard what was said. Parents reported the following: “YOU learn how to express yourself, but you also learn that not everyone can hear your pain”; “You need to be recognized as a parent, but where do you go to get that recognition when no one knew your baby”; “Everything is okay with my friends, as long as I don’t talk about my baby. When I do, they look away and change the subject. What am I supposed to do? I need to talk!” Often, parents confided that they refrained from seeing friends to avoid their uneasiness. For parents who experienced miscarriage, estrangement from friends was related to social biases that miscarriage is not “a real loss.” Eventually, many parents abandoned some or most social relationships and their network weakened.
JOG“
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Friendships that were maintained were said to be particularly “nourishing.” Parents wrote that their loss gave them the opportunity to discover who their true friends were, who would be there in times of need, and whom they could count on.
P e r i n a t a l loss can alter permanently parents’ relationships with members of their network .
Relationships WithHealth Care Professionals Some parents found that health care professionals had. supported them well through their loss. In some cases, they realized that their confidence in themselves had been strenghtened by the professional’s intervention. One intervention that parents particularly appreciated was being informed by nurses of the value and importance of rituals in coping with their grief. Some parents faced health care professionals who were uneasy in dealing with them and who tried to avoid them. Some health care professionals left parents alone while they were giving birth or asked them to decide quickly about what to do with the baby’s body. Parents often felt rushed to make important decisions with little information regarding the consequences of their choices. Anger and blame towards health care professionals were also common. When parents felt unsupported, they tended to use a different physician and hospital with their subsequent pregnancies. One example of the absence of support is found in this study: A father, trying to find a psychologist for his wife and himself, was told by a mental health professional, “I will only see your wife, she’s the one who lost the baby.” Another told him, “It’s normal to feel depressed. Come back to see me in 6 months if you feel the same.” This father felt that his right to grieve was unrecognized by mental health professionals, and he was frustrated and hurt by these experiences. Following the loss of their baby, parents were offered much advice, often contradictory, about having another child. Generally, parents agreed that health care professionals should not tell them what to do, in terms of having a baby or waiting, because, as one mother said, “nobody really knows our lives.” All in all, parents wrote that they would like to be informed about the pros and cons of trying to have another baby right away versus waiting a couple of years, but the decision itself should be entirely theirs, and others should not judge the parents for their decision. Parents who have lost a baby tend not to join bereaved parents’ groups unless they are specifically for those who have had a perinatal death. Parents said, “I didn’t feel at ease being with parents who had lost an older child. My loss didn’t seem as important as theirs,” and “It felt awkward being with other parents. I couln’t share souvenirs, just dreams. It didn’t seem much.” This last statement illustrates how parents themselves have difficulty in society validating their perinatal loss. In summary, family members’ quality and quantity 254 JOG”
of ties with their social network were profoundly affected by the perinatal loss. Although some families experienced reinforcement of their bonds with their social network, most suffered permanent losses of relationships with friends, colleagues, or extended family members, leaving them more vulnerable. We had expected differences in the disruption of ties with the network to depend on the type of perinatal loss (for example, miscarriage versus stillbirth); comments from parents in this study did not confirm such a difference.
Nursing Implications The need is apparent for specific nursing interventions that prevent disruption of the bereaved families’ social networks. Our clinical experience with bereaved families has brought us to believe that family members possess the strengths and capacities to maintain or restore a solid and nourishing network. Nurses can make a difference in enhancing the quality and quantity of support that bereaved parents receive from their networks. We propose the following interventions.
Knowing and Sharing Information 1. Inform families about reactions they can expect (avoidance, grief, uneasiness, sadness, etc.) from extended family, friends, and health care professionals. 2. Explain to them the reasons underlining these reactions, such as a person’s personal discomfort
N u r s e s can make a difference by knowing what i s happening within these families, offering various forms of support, maintaining families’ beliefs in their strengths and capacities, and enabling families to rebuild their networks.
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in dealing with the subject of death, past experiences, or inability to communicate support. 3 . Explain, in simple terms, the legal procedures regarding body disposal and hospital policies and procedures. 4. Give parents complete and unbiased information about having another pregnancy. 5. Inform families of available resources in the community, such as bereaved parent groups, clinical nurse specialists, psychologists, etc.
Supporting Families and Enabling Them to Rebuild Their Networks 1. Allow family members and visitors opportunities to express how they feel about this baby’s death by questioning and reflecting on the meaning of this loss for this family. 2. Encourage families to bring up the subject of their baby’s death with their extended family, friends, and health care professionals in order to facilitate communication. 3 . Help families clarify and clearly express their needs and expectations to extended family, friends, and health care professionals. 4. Suggest how the parents can express their needs to others in a nonthreatening manner. 5. Help parents express their support to each other; for example, by asking each parent how he/she wishes to be supported. 6. Express your own feelings toward this family’s experience. 7. Give parents the time and privacy to make their decisions. 8. Identify with the family ways to maintain or reestablish contact with others, such as organizing a ritual or a family reunion, expressing their feelings, etc.
Offering Spiritual Support and Maintaining Families’ Beliefs in Their Strengths and Capacities 1. Emphasize the family’s strengths and uniqueness. 2. Explore how family members have gone through crises before, what was helpful then, and what could be useful now. 3 . Assess family members’ religious and cultural beliefs, particularly beliefs about life and death and after-life. 4. Explain the importance of rituals in grief resolution, since rituals convey the reality and importance of the family’s loss to the community. 5. Suggest rituals, such as holding a memorial service, if desired. 6. Explore ways to perpetuate their baby’s memory and to give him or her a place in the family his-
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society's failure to recognize and validate a perinatal loss as real and significant for the family contributes to disruption of the family’s network.
tory, such as keeping a scrapbook of mementoes or a journal, planting a tree, naming the baby, contributing to a fund in the baby’s name, etc. 7. Explain alternative methods of body disposal.
Conclusions and Recommendations Perinatal loss causes great upheaval in couples’ relationships (de Montigny & Beaudet, 1997; Feeley & Gottlieb, 1988-1989; Wallerstedt & Higgins, 1996). The current study has shown the disorganization parents experience in their relationships after a perinatal death. Considering the changes participants noted in their relationships with their network, further investigation of the impact of these changes on family members’ grieving process would be useful to guide nursing interventions. It also might be useful to compare the impact of different types of perinatal losses on family members’ relationships with the network. Finally, exploring the impact of the suggested nursing interventions on the maintenance or reinforcement of the quality of the network would be highly desirable.
Acknowledgments This study was funded by the Regional Regie of Health and Welfare Services of Quebec Outaouais (RSSSO) and by the Editions du Renouveau Pedagogique, Inc., City St.-Laurent, Quebec, Canada.
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tion d’une intervention syste‘mique. Research report submitted to the Regional Regie of Health and Welfare Services of Quebec (Outaouais),Hull. De Montigny, F., Beaudet, L., & Dumas, L. (1996b). Ripercussions de la mort d’un enfant sur la famille. Infirmiere Canadienne. 92,(10), 39-42. Deslauriers, J. P. (1991). Recherche qualitative: guide pratique. Montrkal: McGraw Hill. Dubouloz, C. J. (1996). Analyse des donnees en recherche qualitative. In M. F. Fortin (Ed.), Processus de la recherche. Montreal: McGraw Hill. Feeley, N., & Gottlieb, L. (1988-1989). Parents’ coping and communication following their infant’s death. Omega. 19,51-58. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine. Hanson, S. M. H., & Boyd, S. T. (1996). Family health care nursing. Philadelphia: F.A. Davis Co. L’Ecuyer, R. (1990). Mkthodologie de l’analyse de‘veloppementale de contenu: Mkthode GPS et estime de soi. Sillery, Quebec: Presses de I’Universitk du Quebec. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills: Sage. Miles, M. B., & Huberman, A. M. (1984).Qualitative data analysis: A source book of new methods. Beverly Hills: Sage.
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Schwab, R. (1992). Effects of a child’s death on the marital relationship: A preliminary study. Death Studies. 2 6, 141-154. Tesh, R. (1990). Qualitative research: Analysis of types and software tools. New York: Falmer. Wallerstedt, C. & Higgins, P. (1996). Facilitating perinatal grief between the mother and the father. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 25, 389394. Wright, L. M., & Leahey, M. (1984). Nurses and families. Philadelphia: F. A. Davis Co. Wright, L. M., & Leahey, M. (1995). L’infirmiere et la famille. V. St-Laurent, Qukbec: ERPI.
Francine de Montigny is a professor in the Department ofNursing Sciences, University of Quebec in Hull, Canada. Line Beaudet is a clinical nurse specialist, Neurologic Disorder Clinic, Sir Mortimer B. Davis Jewish General Hospital, Quebec, Canada. Louise Dumas is a professor, Department of Nursing Sciences, University of Quebec in Hull, Quebec, Canada. Address for correspondence: Francine de Montigny, RN, MScInb Professor of Nursing, Department of Nursing Science, University ofQuebecin Hull, C.P. 1250, Succ. B, Hull, Quebec, J8X-3X7, Canada.
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