This article was downloaded by: [Arizona State University]
On: 15 April 2013, At: 09:52
Publisher: Routledge
Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House,
37-41 Mortimer Street, London W1T 3JH, UK

Journal of Social Work in End-Of-Life & Palliative Care
Publication details, including instructions for authors and subscription information:
http://www.tandfonline.com/loi/wswe20

Stillbirth: The Mother's Experience and Implications for
Improving Care
a

Joanne Cacciatore LMSW and FT & Suzanne Bushfield PhD and MSW and BCD

b

a

Social Work Department, College of Human Services, Arizona State University, P.O. Box
37100, Phoenix, AZ, 85069-7100 E-mail:
b

Social Work Department, College of Human Services, Arizona State University, P.O. Box
37100, Phoenix, AZ, 85069-7100 E-mail:
Version of record first published: 17 Oct 2008.

To cite this article: Joanne Cacciatore LMSW and FT & Suzanne Bushfield PhD and MSW and BCD (2007): Stillbirth: The
Mother's Experience and Implications for Improving Care, Journal of Social Work in End-Of-Life & Palliative Care, 3:3, 59-79
To link to this article: http://dx.doi.org/10.1300/J457v03n03_06

PLEASE SCROLL DOWN FOR ARTICLE
Full terms and conditions of use: http://www.tandfonline.com/page/terms-and-conditions
This article may be used for research, teaching, and private study purposes. Any substantial or systematic
reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to
anyone is expressly forbidden.
The publisher does not give any warranty express or implied or make any representation that the contents
will be complete or accurate or up to date. The accuracy of any instructions, formulae, and drug doses should
be independently verified with primary sources. The publisher shall not be liable for any loss, actions, claims,
proceedings, demand, or costs or damages whatsoever or howsoever caused arising directly or indirectly in
connection with or arising out of the use of this material.

Stillbirth:
The Mother’s Experience
and Implications for Improving Care
Downloaded by [Arizona State University] at 09:52 15 April 2013

Joanne Cacciatore, LMSW, FT
Suzanne Bushfield, PhD, MSW, BCD

ABSTRACT. More children die as a result of stillbirth than all other
causes of infant deaths combined (Ananth, Shiliang, Kinzler, and
Kramer, 2005; Goldenberg, Kirby, and Culhane, 2004; Froen, 2005; National Institute of Health, 2004); yet, mothers experiencing stillbirth are
often left without support afterwards (Kubler-Ross, 2004; Fahey-McCarthy, 2003; Fletcher 2002; Saddler, 1987; DeFrain, 1986; KirkleyBest & Kellner, 1982). Despite social work’s growing involvement in
care at the end of life, parents of stillborn children have not experienced
consistent, relevant, and competent professional care in coping with
the tragedy of death. Forty-seven women between the ages of 19 and
51 were recruited through nonprofit agencies that provide bereavement
care to grieving families. Results of this qualitative study suggest that
stillbirth is emotionally complex with long-lasting symptoms of grief
and significant struggles to find meaning. The findings also support the
need for perceived psychosocial and spiritual support from professional caregivers, family, and friends. The women’s own experiences
argue for comprehensive approaches to support the grief and loss of
Joanne Cacciatore is Faculty Associate and Program Coordinator, Social Work Department, College of Human Services, Arizona State University, P.O. Box 37100,
Phoenix, AZ 85069-7100 (Email: Joanne.Cacciatore@asu.edu).
Suzanne Bushfield is Clinical Associate Professor and BSW Coordinator, Social
Work Department, College of Human Services, Arizona State University, P.O. Box
37100, Phoenix, AZ 85069-7100 (Email: suzanne.bushfield@asu.edu).
Journal of Social Work in End-of-Life & Palliative Care, Vol. 3(3) 2007
Available online at http://jswel.haworthpress.com
© 2007 by The Haworth Press, Inc. All rights reserved.
doi:10.1300/J457v03n03_06

59

60

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

stillbirth, and for the importance of social work involvement in both immediate and longer term interventions. doi:10.1300/J457v03n03_06 [Arti-

Downloaded by [Arizona State University] at 09:52 15 April 2013

cle copies available for a fee from The Haworth Document Delivery Service:
1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website:
<http://www.HaworthPress.com> © 2007 by The Haworth Press, Inc. All rights
reserved.]

KEYWORDS. Stillbirth, social support, spiritual support, grief, pediatric
death

INTRODUCTION AND PURPOSE
Every day in the United States, nearly 100 babies are stillborn (Froen,
2005; Fletcher, 2002). More children die as a result of stillbirth than all other
causes of infant deaths combined (Ananth, Shiliang, Kinzler, and Kramer,
2005; Goldenberg, Kirby, and Culhane, 2004; National Institute of Health,
2004; Hankins and Spong, 2001; Smith Armstrong, 2002); yet, mothers experiencing stillbirth are often left bereft of support in one of life’s most unexplainable experiences (Fahey-McCarthy, 2003; Hagenow, 2003; Kissane,
2003; Fletcher 2002; Vaisanen, 1999; DeFrain, 1986; Kirkley-Best &
Kellner, 1982). Despite social work’s growing involvement in care at the end
of life, parents of stillborn children have not experienced consistent, relevant,
and competent professional care in coping with the tragedy of infant death.
The shifting focus of hospital social work to discharge planning and referral
services, and inadequate preparation of social workers, may contribute to this
neglect. Social workers need to advocate for the importance of psychosocial
and spiritual care, and the role of social work in providing this care.
This study sought to understand the experiences of women who have
had a sudden intrauterine infant death, to explore what they have found
helpful in the process of moving through their grief, and how the experience has transformed them. It was expected that the women’s experiences may enrich our understanding of the need for more comprehensive
and holistic models for support which address the bio-psycho-social-spiritual needs of women experiencing stillbirth.
SCOPE OF THE PROBLEM AND IMPACT
Worldwide, there are about 4 million sudden intrauterine infant
deaths every year. Historically, minority groups have been over-represented in both fetal and infant mortality rates. The rates, measured per

Downloaded by [Arizona State University] at 09:52 15 April 2013

Peer-Reviewed Articles

61

1,000 live births, have remained between 20 and 30 for African Americans, 30 and 35 for Native Americans, and between 10 and 15 for Caucasians (Centers for Disease Control, 2004). Despite the fact that
stillbirth happens to about one in 100 pregnant women, it is a loss that
has been largely overlooked and even ignored.
Stillbirth most frequently takes place in hospitals, where labor and delivery services focus on birth, and may not be well prepared to address
death. Stillbirth has one common denominator absent in all other types of
deaths. The sudden death occurs only in a woman’s body and often is
known as the “invisible death” (DeFrain, 1986). Social workers would do
well to recognize that the grief experience after a child dies is debilitating.
It is one of the “most painful bereavements” (Sheldon, 1998), and is
among the most “intense and profound” human experiences still prevalent in Western civilization (Michon, Balkou, Hivon, & Cyr, 2003). Yet,
“little is known about the experiences a family has after a child dies”
(Fletcher, 2002, p. 58), especially in the case of stillbirth. In part, this is
due to the change of status of the mother experiencing stillbirth: “by the
time a loss has occurred, the . . . neonatal patient is no more and the
woman is no longer pregnant, therefore no longer an obstetrical patient”
(Layne, 2006, p. 605). Stillbirth was an under-researched, unexplored
arena in medical literature until recently.
Childbirth has a significant social, emotional, physiological, and political influence on the lives of many women (Smith Armstrong, 2002;
Arms, 1994). An experience that traverses culture (Smith Armstrong,
2004), childbirth is recognized in the customs and rituals of both modern and pre-modern societies. In some cultures, the pregnant woman is
revered. Most often, childbirth is celebrated with joy, anticipation, and
high expectations (Worth, 1997). Instead, when the baby is stillborn,
mothers experience death, departure, and grief (Cacciatore, 2007). Bereaved parents are known to suffer higher rates of complicated grief
(Zhang et al., 2006). The vital role of social workers and other
psychosocial providers with expertise in dealing with these tragic
events has recently been identified (Truog et al., 2006).
ROLE OF SOCIAL WORK IN HOSPITAL SETTINGS
Immediate responses by social work and the interdisciplinary team to
bereaved parents vary considerably. The advantages of full participation of hospital social work as part of the interdisciplinary team have
been well documented (Kitchen & Brook, 2005; Mizrahi & Berger,

Downloaded by [Arizona State University] at 09:52 15 April 2013

62

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

2005). Increasingly, social work’s role within the hospital setting has
shifted, and these changes have sometimes limited the involvement of
social work to discharge planning (Mizrahi et al., 2005; Berger et al.,
1996). Barriers to effective and active social work involvement have
been identified, including the need for training (Reese, et.al., 2005;
Papadatou, 1997) and a personal philosophy on life and death
(Lattanzi-Licht, 1991). Hospitals have adopted standards of care which
may include referral for psychosocial and spiritual support, and protocols for disposition of the remains. But open and honest communication, opportunities to hold and photograph the child, information, time
to process the experience, and other supportive counseling interventions vary widely. Nurses, social workers, and other caregivers can
buffer negative, long term effects to those who have experienced traumatic loss (Cacciatore; 2007; DeFrain et al., 1990; Malacrida, 1997;
Sheldon; 1998), and they play a particularly important role when a child
has died. Immediate intervention strategies in the hospital, however,
may not be enough when a child has died. Thus, many professional
disciplines, including social work, have relied on community-based
intervention modalities (Callahan, 1995).
THEORETICAL FOUNDATIONS
Attachment theory, theories of social support, and transpersonal theory have particular relevance to the loss experienced in stillbirth. Present-day epistemology in grief, loss, and mourning “rests on
foundations” constructed by British psychiatrist, John Bowlby.
Bowlby’s model does not suggest that attachment is contingent on age,
time spent in a relationship, or interdependency. Rather, Bowlby’s
model recognizes the complexities, strata, and scope of attachment.
Bowlby, as well as some Neo-Freudians, postulate that grief is an emotion to experience and work through rather than an emotion to circumvent. The implication is that healing from the traumatic death of a loved
one requires work, time, and support from others. Bowlby’s attachment
model does not minimize the attachment which might be present between a mother and her stillborn child, and there is reason for social
groups to provide support which extends beyond the immediate event of
stillbirth (Fast, 2003).
There are many “unique factors of parental bereavement” (Rando,
1985, p. 21) and “the death of a child incites an incalculable range of responses” including somatic and psychological distress (Cacciatore,

Downloaded by [Arizona State University] at 09:52 15 April 2013

Peer-Reviewed Articles

63

2007). Rando’s understanding of grief and loss suggests dual struggles
to deny the loss, and avoidance of letting go of the loved one (Rando,
1992). Within a framework of “retreat, exclusion, and mastery” the
death of a child complicates the need for support. Social, and sometimes
political, support groups have emerged as creative and successful interventions “undertaken to create a community of bereavement” (Fast,
2003, p. 486). Their apparent successes are attributed to the connection
between those with like, often difficult and painful, experiences (Muller
& Thompson, 2003; Griefzu, 1996; Rodale & Stocker, 1994). Social
workers who recognize the value of connecting vulnerable individuals
with one another may make referrals to community-based support
groups (Boivin, 2004; Hurdle, 2001; Anke & Fugl-Meyer, 2003)
whereby the client can experience emotional support (a sense of belonging), instrumental support (a safe place for dialogue), educational support (advice and suggestions), and appraisal support (normalization and
social comparison) (Cacciatore, 2007; Glanz, Rimer, and Lewis (2002).
Support for bereaved parents has also been found to facilitate meaning-making (Lister, 2006). Social support and attachment, however, do
not fully account for the aspects of meaning and other spiritual losses
associated with stillbirth. The need to address loss more holistically
suggests a need for theories which incorporate the spiritual dimension
of grief.
A transpersonal perspective is one that can “move beyond the person,
or beyond ego” (Smith, 1995, p. 403). Transpersonal approaches recognize the spiritual dimension, while rejecting the artificial divisions of
the physical, psychological, social, and spiritual self, and may be necessary in order to communicate a respect for the person’s values and beliefs (Cowley & Derezotes, 1994). By focusing on wholeness, healing,
transformation, meaning, and hope, transpersonal approaches may offer
a more holistic framework for approaching women experiencing stillbirth. “Validation experienced through support may assist bereaved
mothers in reconciling spiritual beliefs and re-working relationships”
(Lister, 2006, p. 6335) as well as transforming previously held beliefs
(Matthews & Marwit, 2006). Transformation has been identified as a
“stage” in the process of grief (Kubler Ross) and this process of transformation is often represented by a new perspective on the loss. “When
change is transformational, it moves people forward on their spiritual
paths” (Canda & Furman, 2000, p. 252). It is precisely this transformation that may assist mothers who experience stillbirth to redefine their
distress in terms of finding meaning in the short life of their child.

64

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Downloaded by [Arizona State University] at 09:52 15 April 2013

LITERATURE REVIEW
Mothers experiencing a stillbirth have been studied with respect to
the epidemiology of stillbirth (Goldenberg et al., 2004; Froen et al.,
2002; and Hankins & Spong, 2001). However, many stillbirths are unexplained. Stillbirth has been identified as a high risk indicator for psychiatric morbidity, including PTSD (Barr, 2004; Walling, 2002;
Vaisanen, 1999; Radestad et.al., 1996 Fones, 1996), and the impact is
long-lasting (Boyle et al., 1996; Vance et al., 1995). Yet, attempts to
study intervention outcomes have produced mixed results. Certainly,
sensitivity to the mother’s experience is one indicator of satisfaction
with hospital care (Lasker & Toedter, 1994). Nevertheless, staff are often not adequately prepared (Chan & Day, 2005). Guidelines for best
practices in psychosocial care following stillbirth include seeing and
holding the stillborn child, as well as other rituals (Hughes et al., 2002).
There is little evidence, however, that these practices result in improved
outcomes. This study fills an important gap in the literature, by focusing
on women who have experienced a stillbirth. While it is clear that stillbirth places women at risk for complicated mourning, many mothers
may not experience hospital based interventions specifically targeted at
their needs; moreover, it is unknown whether or not these interventions,
even when experienced, are helpful. The qualitative study reported here
was part of a larger, mixed-methods study which explored the effects of
social support on women experiencing stillbirth (Cacciatore, 2007).
This study explored what bereaved mothers have found to be helpful in
the process of moving through grief, and how the experience has
transformed them.
METHOD
Phenomenology is one method for gaining insight into the lived experience (Rose et al., 1995). Perspectives on the most sensitive life experiences may require this approach (Lee & Renzitti, 1993), in order to
better understand the mothers’ lived experience.
Participants
Participants were recruited using purposive and snowball sampling.
Participants were notified of the study through nonprofit agencies that
provide bereavement care to grieving families. Other participants who

Peer-Reviewed Articles

65

were recruited by snowball sampling learned about the research through
others in their social network.

Downloaded by [Arizona State University] at 09:52 15 April 2013

Data Collection
Participants were provided general instructions as well as a copy of
the Informed Consent. They were instructed to respond to the self-administered questionnaire reflecting on their current feelings and emotions. Participants completed the questionnaires in their own homes and
returned the questionnaires by mail to the researchers. Upon receipt,
questionnaires were assigned identification numbers and stored separately from consent forms, in order to maintain the anonymity of
participants.
Instrument
Two qualitative questions were asked along with an open ended narrative that allowed participants to share primary concerns or previously
unexplored thoughts. Question one (Q1) inquired, “What do you feel
has most helped you deal with the death of your child?” Question 2 (Q2)
inquired, “Has your child’s death changed you and if so in what
way/ways?” There was also a place for an Optional Narrative (QOpen),
“Please share any other information that you believe will be helpful in
this research.”
Qualitative Data Analysis
Qualitative data were placed in a matrix to isolate clusters of common, emergent themes in the responses provided to participants. Horizontal linkages and regularities in language were carefully analyzed.
The phenomenological rubric was used to discover both the objective
and subjective realities and meanings associated with the experience of
the child’s death. Following the process outlined by Moustakas (1994),
the essential essence of what was experienced and how it was experienced was described. Bracketing was used to isolate the researcher’s
own experiences and reflections.

66

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

FINDINGS

Downloaded by [Arizona State University] at 09:52 15 April 2013

Demographics
Women between the ages of 19 and 51 (n = 47) responded to the
questionnaire. There were 38 European Americans, three African
Americans, three Latino, two ‘Other,’ and one Asian. Most participants
held an undergraduate degree (n = 23), followed by high school diploma
(n = 12), graduate (n = 7), and postgraduate (n = 4). One participant did
not answer this question. All experienced the stillbirth of their baby at
various gestational ages (Table 1).
The nature of the death was most often sudden and unexpected (n =
44). The time since death ranged from within the past year (n = 10), one
to two years (n = 10), two to five years (n = 17), five to 10 years (n = 7),
and greater than 10 years (n = 3). Most women had other surviving children. A higher level of diversity was apparent in demographics relating
to religious faith and spirituality, although some who responded “None
Specified” may have considered themselves to be spiritual. Participants
were Christian (n = 24), Catholic (n = 9), None Specified (n = 9), Buddhist (n = 3), Jewish (n = 1), Atheist (n = 1). More than one-half (53.2%)
of the participants claimed membership to a specific church, temple, or
synagogue.
Q 1: What do you feel has most helped you deal with the death of
your child?
Out of 47 responses, four of whom chose not to respond, 39 reported
that support groups and talking with other bereaved parents were the
most helpful in dealing with the death of their child. This help came
through a sense of belonging and affiliation, reversal of isolation, and
through validation of the mother’s experience. This sense of connection
and support was experienced as a bittersweet oasis, within a world
which frequently dismissed, ignored, or minimized the painful loss of
stillbirth.
Q1 Theme1: Support and talking perceived as helpful validation
of the mother’s experience
Mothers reported that the experience of talking about their loss, hearing from others experiencing similar losses, and meeting others who
shared the grief experience as helpful. It appears that this sense of vali-

Peer-Reviewed Articles

67

Downloaded by [Arizona State University] at 09:52 15 April 2013

TABLE 1. Gestational Age of Child at the Time of Death

dation, coming from others who have experienced stillbirth cannot be
replaced by other types of support. “Meeting those who had actually
survived the death of their child,” and “other grieving parents . . . have
validated my grief.”
Q.1 Theme 2: Support as reversal of isolation, providing comfort,
connection, and a frame of reference
Mothers expressed that this type of support and acknowledgment
provided a frame of reference within which mothers experiencing stillbirth could begin to normalize their feelings. For example, “. . . having
people acknowledge (her) life and death and her impact on my family,
helped me to know that I’m not crazy.”
Mothers were particularly helped by feeling that they were not alone in
their grief, and that someone else could understand the experience. One
mother noted, “I was so grateful to have a place to turn where people experienced the same nightmare and knew what I was going through...Others
just can’t relate to what has happened.” The examples of others who had
survived the experience provided hope, a place to validate the child’s life,
and a sense that survival was possible. “Time, love, faith, support, prayers,
and going to support group meetings, proved to be a great help...At the support group, everyone can cry together and comfort each other share pictures–that is priceless!” Mothers also noted the courage others
demonstrated, serving as a beacon to carry on the journey of grief. “Without the courageous parents I’ve met through support groups, in person and
online, I do not think I’d be here today.”
Q2: Has your child’s death changed you and if so, in what ways?
This question addressed transformations, which can take a long time
after the child’s death. All 47 respondents noted that their child’s death

Downloaded by [Arizona State University] at 09:52 15 April 2013

68

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

had evoked some type of change. Many had epiphanies about the fragility of life. Some discovered inner strength and some reported they have
become activists for related causes. Many, particularly those further
along in the grief, expressed frustration with others for the perceived
lack of validation and acknowledgement of their child’s life. Those who
reported involvement in helping others through various parental or advocacy organizations generally stated a positive change of direction, focusing on a new sense of compassion for others. Again, this change,
while perceived as mostly positive, came with a price that no one
wished to pay. The integration of the death and loss into the mother’s
continuing life represents a profound struggle, and also a transformation. The element of time is significant; some participants had taken
many years to come to a sense of meaning or purpose.
Q2 Theme 1: Life is forever changed: view of self and others
The experience of a child’s death marked a transition in how mothers
viewed themselves and others. “My child’s death has changed me to be
a more sensitive person to other’s feelings. Her death has made me realize not to take things for granted such as my living children.” Noting
that this change, even when positive, was not welcomed due to its cost,
mothers identified a movement toward sensitivity to others, and compassion for the needs of others.”. . . Although I’d give up all the growth
in a second to have her back, her death has propelled me toward being
more compassionate, helping others, and she has changed the way I
view the world.” This change, as well as the loss, is described as permanent, and transformational. “. . . My loss is part of me, of who I am, and
makes up my life story.” Another mother indicated, “I am touched forever. The void will always be there.” The change was also marked by a
turning point, an outward view of self which begins to focus on the
needs of others. “I feel so much more deeply for people who have lost a
child at any age. I am not naive and innocent about life and I have
learned what grace from God is–truly. I appreciate life more and the
fragility of pregnancy that I never knew existed.
Q 3: Please share any other information you believe will be helpful
in this research.
This narrative opportunity was open ended so that participants could
explore the most important issues that needed reiteration or that were
not covered in the research. Three themes were identified: profound

Downloaded by [Arizona State University] at 09:52 15 April 2013

Peer-Reviewed Articles

69

loss, what professionals should know and do, and transformation over
time, with spiritual dimensions of meaning and purpose. Again, the responses here overwhelmingly converged on many of the mothers’ concerns over societal legitimization of their child. This theme was woven
throughout the voices of many women in this research. Respondents
openly discussed their feelings of disenfranchisement and social isolation. Some expressed concern regarding the ethic of compassionate care
provided to them during their child’s death and others praised caring
professionals. Many were now able to recognize what was needed or
what would have been helpful, and how others were ineffective in
meeting the need. Mothers emphatically communicated the depth of
their losses, and the longing for “what would have been helpful.” The
transformations described suggest the spiritual focus on meaning
making and transcendence, which signals a transformation of the
grief to a sense of purpose and “giving back.” However, for some respondents, the challenge to faith which is presented by grief has yet
to be resolved.
Q 3: Theme 1: Expressions of profound loss
Despite the transformation that stillbirth brings, and the ability of
mothers, over time, to find meaning, it does not diminish the sense of
loss. “(His) death has by far been the most devastating, life-changing
event in my life.” This experience of loss is profound, and continues as a
painful reminder of what is missing. This loss may be expressed differently, but commonly with deep physical sensations. One mother wrote,
“The months after were filled with therapy and medication for
post-traumatic stress disorder, anxious days and panicked nights. I am
no longer whole. A part of me is gone forever-literally. Like a limb torn
from a body. . .”
Another expressed, “There were moments when I could have shriveled up in bed forever.” The physical pain can also begin to manifest as
a spiritual pain.
“I am now part of a ‘club’ that I never knew about or wanted to
know about . . . There is a physical pain in my heart and nothing
can repair it.
My body aches to hold and know who my son would have been . . .
my soul will never be the same.”

70

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

This multidimensional loss has a way of separating the mother from
others. “I’m not sure of ‘faith’ in any traditional sense nor do I believe in
heaven or angels . . . sometimes, I felt like an outsider in a place where
I’d hoped to be understood . . .”
Q 3: Theme 2: What professionals should know and do (and what
they did not do):
Downloaded by [Arizona State University] at 09:52 15 April 2013

Need for Information and Guidance
In looking back, participants were able to identify a number of
“missed opportunities” in the hospital, when staff might have offered
additional help, through information and process. “I wish the nurses
could have guided us more in our final hours with our son. I didn’t think
to bathe or dress him or have our pictures taken holding him. I wish
someone would have suggested it.” In retrospect, mothers can identify
needless struggles that might be prevented by proactive involvement of
hospital personnel, particularly social workers.
“I cannot express how important it is for moms who go through a
stillbirth to be given information immediately after it happens in
order to help her (and husband) cope . . . being a physician myself,
I asked tospeak to a social worker on call . . . she was less than
helpful . . .”
Some seemingly small gestures are appreciated and remembered as
significant. “Our nurses called our child by her name which helped our
feelings to know that she was not being treated as another statistic.”
Need for Timely Intervention
It is also noteworthy that there is a critical window for intervention.
Leaving the hospital without the anticipated child may make mothers
even more sensitive to the timely intervention of social work. “Hospitals should have caring, competent social workers . . . the social worker
we saw didn’t see us until ten minutes before discharge . . . No one was
there to help us make major decisions or even lend guidance . . .” Another mother indicated, “We were told a social worker would visit us
prior to discharge but one never did.”

Peer-Reviewed Articles

71

Downloaded by [Arizona State University] at 09:52 15 April 2013

Need for Follow Up and Personalized Care
Mothers identified a need for follow-up during the immediate
post-stillbirth experience. This follow-up should be from someone experienced in this particular kind of loss. “There is a strong need to find a
therapist that has experienced the loss . . . I’ve yet to find one that has
experienced the death of a child . . . the most hurtful thing was never getting a call from our Drs. to see how we were doing.” The absence of
contact is often interpreted as a lack of concern or care, and increases
the feelings of isolation and loss.
“I was not sent home with a single number I could call or any type
of literature on bereavement. I’ve since then read about bereavement packets being available from MISS Foundation and March
of Dimes that are wonderful . . . but that would have been much
more helpful in the immediate days and weeks after my son’s
death.”
Mothers are otherwise left on their own. Mothers who have experienced timely support and concern, as well as follow up, remember this
reaching out for a very long time.
“I also would have liked to receive follow-ups in the months after
my loss to see how I was coping emotionally. I also wish that infant loss support members could have come to the hospital to lend
support and guidance . . .” “My doctor called and checked on us after we were home which showed us that he cared . . .”
Q3: Theme 3: Transformation takes time; “giving back” as a
milestone for healing
It may take months, or even years, but mothers who experience stillbirth do identify change over time. “As time passes, I feel I am beginning to see the more positive ways in which I can take action and reach
out to other bereaved parents.” It may be surprising that this grief trajectory is lengthy. “I never imagined I would be standing today (after 5-1/2
years) as a strong, healthy mother of a child who died . . . Through our
stories, our children live and we heal.”

72

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Q3: Theme 4: Finding meaning and purpose, renewed sense of
self

Downloaded by [Arizona State University] at 09:52 15 April 2013

The renewal and transformation of the profound loss of stillbirth comes
slowly. When this meaning is accompanied by a sense of purpose, mothers
acknowledge that the child they have lossed was uniquely valuable.
“Accepting and facing my daughter’s death has enabled me to find
myself in the process. I spent so many years trying to find that
‘something’ that would give me peace. I have my husband and son
but still needed to find myself. To find my own purpose in life. My
daughter’s life was short but I thank her for giving me true purpose
to help others.”
This transformative aspect of loss depends on the compassionate
support of others. “But (they) helped nourish me, to continue to see myself as someone’s mommy, to do meaningful work in the world, not for
‘gains’ but as my child’s legacy.” It is through this compassionate support that mothers make sense of the loss. “And I believe in human kindness and goodness even more after the outpouring of love we received
from the moment we found out her heart was not beating . . . I’m learning to trust at a different level.”
DISCUSSION
Mothers experiencing stillbirth reflect a sense of profound loss that is
long-lasting. This does not always meet with supportive responses
within the usual settings. Hospitals, where most births and stillbirths
take place, have often neglected to attend to the special needs of mothers experiencing stillbirth. Moreover, the short-term hospital stay
would suggest that other community-based interventions may be
needed. A shift to incorporate transpersonal approaches may offer
better models of responses to mothers experiencing stillbirth. The shift
might also begin with subtle changes to deconstruct the way that stillbirth is perceived and allow women who have undergone stillbirth to
construct their own realities about their losses. In open ended responses,
the women participating in this study referred to the stillborn child as
her child. Acknowledging and reflecting this language used to talk
about stillbirth may be significant in addressing the disenfranchisement

Peer-Reviewed Articles

73

Downloaded by [Arizona State University] at 09:52 15 April 2013

of mothers experiencing stillbirth. The prevailing culture, medical or
non-medical, often uses the terms “reproductive loss,” “fetal demise,”
or “adverse outcome of pregnancy” when discussing sudden
intrauterine infant death. Mothers indicated that this serves to
de-personalize and minimize the loss of their child.
. . . The language chosen to describe social issues is very powerful.
Historically, euphemisms are used to “clean up the mess” of social
problems. Yet, if we do not call it what it is, such as in the case of
stillbirth, frankly, the birth of a dead baby, society will never pause
to pay attention and the ‘cause’ will take longer to establish firm
roots . . . . (By using) the phrase “pregnancy loss” to talk about the
death of a child to stillbirth, there is an inference that a child, in
fact, did not die. Rather that “merely” a pregnancy was “lost.” For
many women, the phrase decries and derogates their very personal
tragedies. (MISS Foundation, 2005, p. 1)
Further, mothers experiencing a loss through stillbirth are vulnerable. Expectations have been thwarted, and the experience, to many, is
traumatizing. The long lasting impacts of the experience suggest the
need for longer trajectories of recovery and reintegration of the loss.
Limitations
This study was part of a larger study on the effects of social support
on traumatic stress and grief responses in women experiencing stillbirth. Purposive sampling was used, targeting women who were accessing support for bereavement, and data collected in a self-administered
survey. This may clearly have limited participation of mothers who did
not experience any distress related to stillbirth. The study also relied on
memory recall of the participants. Limitations also include social desirability bias. Despite the limitations, the findings suggest that
psychosocial and often spiritual support may be necessary for women
experiencing stillbirth, and that caring social workers and other
professionals should recognize and respond to this need.
IMPLICATIONS FOR SOCIAL WORK
1. Need for Emotional Support: “Linkages and Nourishing
Relationships”

74

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Downloaded by [Arizona State University] at 09:52 15 April 2013

“Other (grieving) parents who support me and have validated my
grief . . . Once I got validation from others, things starting getting
better for me.”
Grief can be a lonely and self-indulgent experience for many individuals. The disappointment and bewilderment at the lack of information
and responsiveness from others seem to incite bereaved mothers to seek
out a sense of communion with others. Support groups may ameliorate
the sense of aloneness and encourage intimacy in relationships, interdependence, and reciprocity, helping to alleviate traumatic stressors associated with the child’s death. Hospital social workers play a key role in
linking mothers to on-going support and services beyond the hospital
experience.
2. Need for Instrumental Support: Reciprocal Healing
and Transcending
“Reaching out to others in my son’s memory.”
“Tangible aid is one of the fundamental functions of a support group”
(Cacciatore, 2007, p. 85). Support group leaders should provide not only
emotional, but practical aid and resources to grieving families. Many
groups are deeply embedded in their communities, and frequently network
with professional caregivers and the faith based community, providing referrals for counseling and other services. The development of those relationships encourages mutual referrals, and more people learn about the
group. The result is that the group may experience faster growth, and seasoned members can then reach out to many others who are more recently
bereaved. Some of those relationships that begin in the support group setting appear to carry benefits beyond the monthly sessions, and relationships between members often become mutually compassionate and
beneficial. “These concrete interactions facilitate healing and help to create
important subcultures of women who transcend their previous place in the
world,” find a higher purpose in their losses, and discover that they are
making a difference in the lives of others (Cacciatore, 2007, p. 85). Hospital social workers are in a key position to be the first responders to the need
for instrumental support, through provision of information, presence, and
taking time to help the mothers process the experience.
3. Need for Transpersonal Approaches When Experiencing Stillbirth

Peer-Reviewed Articles

75

“I didn’t understand . . . why me?”

Downloaded by [Arizona State University] at 09:52 15 April 2013

“Every night I pray for those who are in mourning over the loss of a child.”
Spirituality was a strong theme for many participants. A few mothers
sought support from multiple systems, one of which included faith
based counseling and support groups. The grief of these mothers had a
vicissitudinous quality, as they volleyed between acceptance and rejection of their babies’ death. For participants in this study faith was a
source of both comfort and strength. Others further down the grief road
cited a semblance of control through altruism: they discussed helping
newly bereaved parents navigate and prepare for obstacles along the
journey. Altruism was a common marker for the majority of mothers,
and it signaled a transition of grief to a place in which they were able to
discover purpose and meaning in their very personal losses. Social
workers are increasingly involved in spiritual assessment, and have new
tools to assist them in developing spiritual competency (Hodge, 2006;
Hodge & Bushfield, 2006), and in fostering hope and meaning-making
(Bushfield, 2003). Involving spiritual caregivers, and working to remove barriers to collaboration, may be important (Furman & Bushfield,
2000). Recognizing that the loss of stillbirth may prompt a spiritual crisis, it may be necessary for social workers to develop an awareness of
the difference between “spiritual emergence and spiritual emergency”
(Canda & Furman, 2000), which is sometimes precipitated by loss.
CONCLUSIONS
This study explored the experiences of bereaved mothers after stillbirth.
The death of a child at any age and from any cause is an irretrievably
life-changing experience. Time was an element in this process, and women
whose experience was many years ago still voiced issues related to their
loss. Reconciling the loss may take many years for some women “as they
find their way” through the effects of traumatic grief (Cacciatore, 2007).
While historically, the emotional effects of stillbirth and perinatal death
have been minimized, politicized, and perhaps, stigmatized, the results of
this study support the notion that stillbirth is as emotionally complex and
traumatic as deaths that occur in later childhood.
These findings demonstrate the need for psychosocial support from
professional care-givers. Social support and psychosocial intervention
strategies may play a promising and fundamental role in helping to ame-

Downloaded by [Arizona State University] at 09:52 15 April 2013

76

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

liorate the most severe responses and reestablish a sense of equilibrium.
They may enable women to engage with other women who relate to the
phenomenological crisis of a stillbirth (Hagenow, 2003). A strong sense
of social support and coherence help mitigate feelings of disenfranchisement and increase individual perceptions of long-term happiness
(Anke & Fugl-Meyer, 2003) and hope. “Social support networks, identified to promote health benefits, also cushion the effects of stress, reduce mortality rates, increase the likelihood that the individual will seek
help” and help people cope (Cacciatore, 2007, p. 73; Hurdle, 2001).
Support networks are particularly important to women (Hurdle, 2001;
DeFrain, 1986).
During the hospital stay, uncaring and dismissive responses may
have a long lasting impact, while supportive responses are beneficial.
However, compassionate care by hospital staff and traditional mental
health services alone may not be enough. On-going support and connection with others who have experienced similar deaths fosters a sense of
belonging and connection and is helpful to mothers as they mourn their
babies. “More training, education, and research is necessary for social
workers . . . to fully understand the unique dimensions of this type of
tragedy” (Cacciatore, 2007, p. 88). Social workers, in addressing this
often unmet need, will find opportunities for advocacy within both the
medical environment in which stillbirth usually takes place, and also
within the larger political environment, both of which may not support
the full recognition of and attention to stillbirth and the benefit of social
work’s holistic responses to mothers experiencing stillbirth.
In support of more holistic approaches, women often have a desire to
reach out for nurturance from others, from resources outside the self and
beyond their core systems during both the acute and chronic crisis. This
aspect of healing and transformation suggests a need for more
transpersonal approaches. The effects of having a stillborn infant are
perduring; some women “struggle for equilibrium, to regain a sense of
control and normalcy, and to discover meaning in their very personal
tragedies” for years after their baby’s death (Cacciatore, 2007, p. 85).
The opportunity to make sense of the loss, find ways to help others, and
honor the life of their stillborn children seems to provide help and a
sense of purpose. Inclusion of holistic approaches to support and integrate the experience of stillbirth in women’s lives may be required. Social workers need adequate preparation to provide effective
interventions at the time of loss, and across the lifespan of grief, and
may need to address systemic barriers which prevent their full participation in multi-disciplinary interventions at the time of stillbirth, and be-

Peer-Reviewed Articles

77

yond the hospital experience. Future research which addresses the
needs of parents experiencing stillbirth, as well as their responses and
outcomes to specific social work interventions, may provide additional
insight into the need for policies which support more holistic
interventions.

Downloaded by [Arizona State University] at 09:52 15 April 2013

REFERENCES
Ananth, Liu, Kinzler, and Kramer, 2005. Stillbirth in the U.S. American Journal of
Public Health, 95(12), 2213.
Anke A, Fugl-Meyer A. (2003). Life satisfaction several years after severe multiple
trauma- A retrospective investigation. Clinicial Rehabilitation. 17, 431-442.
Arms, S. (1994). Immaculate Deception II: Myth, Magic, and Birth. Celestial Arts
Colorado.
Boivin, C. (2003). Men and women in infertile unions benefit from psychosocial intervention. Social Science Medicine. 57(12), 2225-2341.
Boyle, Vance, Najman & Thearle (1996). The mental health impacts of stillbirth, neonatal death, or sids: Patterns of distress among mothers. Social Science Medicine,
43 (8), 1273-1282.
Bushfield, S. (Winter, 2004). Hope and meaning-making: Can hospice social workers
be effective guides? Healing Ministry, 11(1), 20-23.
Cacciatore, J. (2007). Effects of support groups on post traumatic stress responses in
women experiencing stillbirth. Omega, v55(1), 71-91.
Cacciatore, J. (2001). The Power of Compassion: A New Attitude in Healthcare. MISS
Foundation Publishing. Phoenix, Arizona.
Cacciatore, J. (2003). Dear Cheyenne. MISS Foundation. Phoenix, Arizona.
Callahan, E. (1995). Psychological intervention for unresolved grief. NCP Clinical
Quarterly. Summer 2 (3).
Canda, E. & Furman, L. (2000). Spiritual diversity in social work practice. New York:
Free Press.
Centers for Disease Control. (2003, 2004). Available online: www.cdc.gov.
Chan & Day, (2005). Attitudes of nurses toward perinatal bereavement: Findings from
a study in Hong Kong. Journal of Perinatal Neonatology Nursing, 19(3), 240.
Cook, P; White, D.K; Ross-Russell, R.I. (2002). Bereavement support following sudden and unexpected death. Archives of Disease in Childhood, 87 (1), 36-40.
Cowley, A.S. & Derezotes, D. (1994). Transpersonal psychology and social work education. Journal of Social Work Education, 30(1), 32-41.
DeFrain, J. (1986). Stillborn: The Invisible Death. Rowman & Littlefield. Lexington,
MA.
Fahey-McCarthy, E.(2003). Exploring theories of grief: Personal reflection. British
Journal of Midwifery, 11 (10), 595-600.
Fast, J. (2003). After Columbine: how people mourn sudden death. Social Work 8 (4),
484-488.
Fletcher, P. N. (2002). Experiences in family bereavement. Family and Community
Health, 25 (1), 57-71.

Downloaded by [Arizona State University] at 09:52 15 April 2013

78

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

Fones (1996). PTSD occuring after painful childbirth. Journal of Nervous and Mental
Disease, 184 (3), 195-196.
Froen, Arnestad, Vege, Irgens, Rognum, Saugstad, Stray-Pederson (2002).
Comparitive epidemiology of SIDS and SUID. Archive of Child Fetal Neonatology,
87: F118-122.
Furman, L., & Bushfield, S. (formerly Fry, S.) (2000). Clerics and social workers: Collaborators or competitors? ARETE, Journal of University of South Carolina School
of Social Work, 24(1),30-39.
Goldenberg, R., Kirby, R., and Culhane,J. (2004). Stillbirth: A review. Journal of Maternal Fetal and Neonatal Medicine, 16, 79-94.
Griefzu, S. (1996). Grieving families need your help. RN. 58 (9), 22-23.
Hagenow, N.R. (2003). Why not person-centered care? The challenges of implementation. Nursing Administration Quarterly, 27(3), 203-207.
Hankins and Spong, (2001). Stillbirth: The overlooked obstetric tragedy. Contemporary OB/GYN, 46 (12), 13-16.
Hodge, D. (2006). A Template for spiritual assessment: A review of the JCAHO requirements and guidelines for implementation. Social Work, 51 (4), 317-326.
Hodge, D. & Bushfield, S. (2006). Developing spiritual competency in practice. Journal of Ethnic & Cultural Diversity in Social Work, 15 (1/2).
Hughes, Turton, Hopper & Evans (2002). Assessment of guidelines for good practice
in psychosocial care of mothers after stillbirth. The Lancet, 360 (9327), 114.
Hurdle D. (2001). Social support: A critical factor in women’s health and health promotion. Health and Social Work. 26(2):72-79.
Kirkley-Best, E., & Kellner, K. (1982). The forgotten grief: A review of the psychology of stillbirth. American Journal of Orthopsychiatry, 52 (3), 420-429.
Kissane, D.W. (2000). Neglect of bereavement care in general hospitals. Medical Journal of Australia, 173, 456.
Kitchen, A., & Brook, J. (2005). Social work at the heart of the medical team. Social
Work in Health Care. 40(4), 1-18.
Lasker & Toedter (1994). Satisfaction with hospital care and intervention after
preganancy loss. Death Studies, 18, 41-61.
Lattanzi-Licht, M. (1991). Professional stress: Creating a context for caring. Ch. 24
(293-302) in Papadatou, D. & Costas (Eds.). Children and Death. Washington,
D.C.:Hemisphere Publishing.
Layne, L. (2006). Pregnancy and infant loss support: A new, feminist, American, patientmovement? Social Science and Medicine, 62 (3), 602-613.
Lee,R. M., & Renzitti,C.M. (1993). Researching sensitive topics. Newbury Park: Sage,
3-13.
Lister, S. (2006). Meaning making in bereaved parents: Process and outcome. Dissertation Abstracts International, Section B, 66 (11-B), 6335.
Malacrida, C.A. (1997). Perinatal Death: Helping parents find their way. Journal of
Family Nursing, 3,130-148.
Matthews, L. & Marwit, S. (2006). Meaning reconstruction in the context of religious
coping: Rebuilding the shattered assumptive world. Omega, 53 (1-2), 87-104.
Michon, B; Balkou, S; Hivon, R; Cyr, C. (2003). Death of a child: Parental perception
of grief intensity. End of Life and Bereavement Care, 8(6),8, 363-366.

Downloaded by [Arizona State University] at 09:52 15 April 2013

Peer-Reviewed Articles

79

MISS Foundation. (2005). Position Statement on Pregnancy Loss Awareness Movement. Available online: www.missfoundation.org.
Mizrahi, T. & Berger, C. (2005). A longitudinal look at social work leadership in hospitals:
The impact of a changing health care system. Health and Social Work, 30(2), 155-165.
Muller, E. Thomson, C. (2003). The experience of grief after bereavement. Journal of
Mental Health Counseling, 25 (3), 183-204.
National Institute of Health, 2004.
Papadatou, D. (1997). Training health professionals in caring for dying families and
grieving children. Omega, 21 (6), 575-600.
Radestad, Steineck, Nordian & Sjogren (1996). Psychological complications after
stillbirth. British Medical Journal, 312 (7045), 1505-1509.
Rando, T. (1993). Treatment of complicated mourning. Champaign, IL: Research Press.
Reese, D., Chan, C., & Schlinger, J. (2005). Beliefs, death anxiety, denial and treatment preferences in end of life care. Journal of Social Work in End of Life and Palliative Care, 1 (1), 25-50.
Rodale, A. & Stocker, S. (1994). Beyond grief: a guide to reconciling life after loss.
Prevention, 46 (8), 88-97.
Rose, P. (1995). Academic rigour in the lived experiences of researchers using
phenomenological methods in nursing. Journal of Advanced Nursing, 21 (6),
1123-1129.
Sheldon, F. (1998). Bereavement. British Medical Journal, 316 (7129), 456-459.
Smith, E. (1995). Addressing the psychospiritual distress of death as a reality: A
transpersonal approach. Social Work, 40 (3), 402-413.
Smith Armstrong, D. (2002). Emotional distress and prenatal attachment in pregnancy
after perinatal loss. Journal of Nursing Scholarship, 34 (4), 339-345.
Spong, C. (2003). NICHD funds major efforts to examine stillbirth. National Institute
of Health Journal. Available at: www.nih.gov.
Truog, R., Christ, G., Browning, D., & Meyer, E. (2006). Sudden traumatic death in children: “We did everything, but your child didn’t survive.” JAMA, 295(22), 2646-2654.
Vaisanen, L. (1999). Family grief and recovery process when a baby dies. Doctoral
Dissertation. University of Oulu, Department of Psychiatry.
Vance, Najman, Embelton, Foster, & Boyle (1995). Psychological changes in aprents
eight months after the loss of an infant from stillbirth, neonatal death, or SIDS. Pediatrics, 96 (5), 933-939.
Worth, N. (1997). Becoming a father to a stillborn child. Clinical Nursing Research, 6 (1),
71-90.
Zhang, B., El-Jawahri, A., & Prigerson, H. (2006). Update on bereavement research:
Evidence-based guidelines for the diagnosis and treatment of complicated bereavement. Journal of Palliative Medicine, 9(5), 1188-1203.

Date Received: 10/02/06
Date Revised: 04/17/07
Date Accepted: 05/29/07
doi:10.1300/J457v03n03_06