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Development and Evaluation of a Peer Support Program for Parents Facing Perinatal Loss
Development and Evaluation of a
Peer Support Program for
Parents Facing
Perinatal Loss
Rachel M. Diamond Rosmarie E. Roose
T
he death of a fetus or neonate can be one of the most profound traumatic
experiences for parents (Koopmans, Wilson, Cacciatore, & Flenady, 2013; Roose & Blanford, 2011). The magnitude of perinatal death is great, with about 1 million deaths occurring across the gestational stages each year (MacDorman & Kirmeyer, 2009). The most common type of loss is miscarriage (i.e., loss occurring at <20 weeks gestation), which occurs in approximately 10% to 15% of clinically recognized pregnancies; stillbirth (i.e., loss at ≥20 weeks gestation) accounts for approximately 26,000 deaths, and neonatal death (i.e., neonate lives <28 days) occurs in 4.04 per 1,000 live births (MacDorman, Hoyert, & Mathew, 2013; MacDorman & Kirmeyer, 2009; March of Dimes, 2012). Abstract: The purpose of this program evaluation was to understand the perspectives of peer parents and parents receiving support within a peer support program for perinatal bereavement at a midsized hospital within the midwestern United States. To document participants’ perceptions of the program, a focus group was conducted with peer parents, and surveys were completed by both peer parents and parents receiving support. In this article we review our model of a peer support program for perinatal bereavement and report on parents’ evaluation of the program. Recommendations through which other organizations can develop peer support programs for parents who have experienced a perinatal loss are provided. http://dx.doi.org/10.1016/j.nwh.2016.02.001 Keywords: bereavement support | miscarriage | peer support program | perinatal loss | stillbirth
Peer Support for Bereaved Parents Peer support is a salient concept for the nursing profession, because it is a means of effectively having lay peers with firsthand knowledge provide support-enhancing interventions to improve the quality of care and outcomes (Dennis et al., 2009). PSPs have been used in a variety of populations. For example, they have been used with parents after the unexpected death of an infant from sudden infant death syndrome or other sudden unexpected infant death (First Candle, 2015) and have been shown to improve outcomes in prenatal care among women with low income (Lapierre, Perreault, & Goulet, 1995), women suffering from postpartum depression (Leger & Letourneau, 2015), and parents with an infant in the NICU (Hurst, 2006; Rossman, Greene, & Meier, 2015). Given that peer support has been associated with benefits for a variety of populations and needs, it would seem likely that perinatally bereaved parents could also benefit. Perinatal loss has been described as an “invisible loss,” meaning it is one that is not often shared or recognized by others (Paul et al., 2010). When people experience distressing events, such as perinatal loss, they often reach out to trusted others for comfort and support. However, perinatally bereaved parents have reported that their grief is often not recognized by family and/or friends (Gold, Boggs, Mugisha, & Palladino, 2012). Such an experience can leave parents feeling isolated and as if their emotional distress is unwarranted. Additionally, these parents face a unique type of grief, which involves their
Rachel M. Diamond, PhD, LMFT, is assistant professor in the Department of Human Development and Family Studies, Marriage & Family Therapy Program, at the University of Saint Joseph in West Hartford, CT. Rosmarie E. Roose, MSN, RNC, is OB nurse navigator in the Maternal Fetal Medicine Center and clinical coordinator for the Still Missed Perinatal Bereavement Program at Adventist Midwest Region/Adventist Hinsdale Hospital in Hinsdale, IL. The authors report no conflicts of interest or relevant financial relationships. Address correspondence to: [email protected].
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expectations and fantasies about the future turning into despair and grief about their reality (Wright, Shea, & Gallagher, 2014). For these reasons, perinatally bereaved parents would seem especially well suited to being connected to a PSP that includes others who have experienced a similar loss. One well-developed description of a PSP specific to perinatally bereaved parents is currently available. Share Pregnancy & Infant Loss Support, Inc. (“Share”), a national organization for perinatal bereavement care, has developed a program called Caring Companion to educate and prepare parent volunteers to provide peer support to families experiencing perinatal loss. Companions are parents who have also experienced a perinatal loss and “wish to guide and support a newly bereaved family through their journey, from the hospital bedside through the grieving process” (Share Pregnancy & Infant Loss Support, 2015). Although Share provides descriptions of its PSP for perinatally bereaved parents, there is still an absence of information about the perceived effectiveness of PSPs by the trained peer parents or the parents receiving support. Thus, the focus of this article is to review the development of our model of a PSP for perinatal bereavement and to report on parents’ evaluations of the program. With this information, our hope was to provide a program model and recommendations through which other organizations can develop PSPs for parents who have experienced perinatal loss.
Developing a PSP Because we recognized the value of peer support within our perinatal bereavement support program that started roughly 28 years ago (Roose & Blanford, 2011), in 2010 we embarked on the development of a PSP. Our PSP is based in a Level III hospital with three referring hospitals in a suburban area of a large midwestern U.S. city. Furthermore, our PSP includes perinatally bereaved families within our network and families referred from the surrounding community. Each month an average of 27 families who experienced a perinatal loss are referred by hospital staff to our comprehensive perinatal bereavement support program for an initial assessment/intake call. During the initial contact with the family, the meaning of the loss, with respect to the applicability of support services, is assessed. If the services are appropriate, the grieving family is informed of the types of services offered and invited to be a part of the perinatal bereavement support program. Services in the program include supportive phone calls made by staff, a quarterly newsletter, support groups for parents and grandparents, annual memorial events, and the PSP. In general, about 25% to 30% of the referred families opt to receive some form of support through our program. Our goal when creating the PSP was to offer recently bereaved parents another option for receiving supportive services
nwhjournal.org
Opening photos: Left © fotohunter, Right © Stockbyte / Both from thinkstockphotos.com
Because parents may face immense grief on multiple levels, many families seek complementary supportive care in addition to traditional medical treatment (Roose & Blanford, 2011). Nurses and other clinicians are faced with the challenge of providing perinatal bereavement care to grieving parents (Kobler & Limbo, 2011; Limbo & Kobler, 2010). Peer support programs (PSPs), in which a recently bereaved parent receives one-onone support from a trained “veteran” parent, can serve as one resource. PSPs can provide an important service to address the comprehensive needs of families by validating and normalizing the experiences of grieving parents. Although the benefits of PSPs for parents who have experienced perinatal loss could be great, to date PSPs’ benefits and limitations for this population have not been well documented.
within our comprehensive perinatal bereavement support program. The PSP would do this by (a) recruiting and training qualified parents who could serve as peer parents; (b) formalizing peer connections by assigning a newly bereaved parent to a trained peer parent; and (c) having program staff maintain a professional supervisory role to peer parents by providing support, education, and evaluation throughout the PSP relationship.
staff asked parents whom they identified as having qualities necessary for a peer parent (e.g., program staff had seen a parent demonstrate supportive listening skills toward other parents in monthly support group meetings) to participate. Before completing the training, interested parents attended an orientation/information session to acquaint them with our PSP. At this session they were provided information about the expectations for being peer parents, the required training, and the referral process to connect peer parents to newly bereaved parents. During the session, staff further evaluated the interested parents’ readiness. In addition, parents were asked to engage in self-reflection to assess their own readiness to serve as a peer parent. Together, staff and interested parents assessed if the parents were ready to be emotionally present for newly bereaved parents as well as physically present for the time commitment needed to accept the role of peer parent in the near future. We understand the assessment of peer parents to be a continuous process; assessment is not done solely for gate-keeping and initial evaluation of readiness. Indeed, assessment of the emotional state of peer parents and their ability to manage taking on newly bereaved parents is important throughout the program. With that being said, upon agreement by staff and parents that parents were ready to engage in the training, parents were invited to attend the PSP training sessions. All
Photo © iStock Collection / thinkstockphotos.com
Perinatal loss has been described as an “invisible loss,” meaning it is one that is not often shared or recognized by others The recruitment and training of interested peer parent candidates is a crucial element of the PSP. We recognized peer parents as being not counselors but parents who were at least one year from their own loss. In this time, the recruited parents were those who had developed insight into the grieving process, had resolved their own grief to the point where they could offer others a compassionate listening ear, and were able to provide helpful information from their own experience. There were two ways parents were recruited to be peer parents for the PSP: (a) a parent expressed interest to program staff and met the before-mentioned criteria or (b) program
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candidates for the program were required to attend the PSP training developed and conducted by PSP staff. The PSP training, conducted by two PSP staff members, a counselor, and a registered nurse, was either one 6-hour session or two 3-hour sessions. The training manual, which contains standards of perinatal bereavement care, was compiled from material adapted from First Candle/SIDS Alliance Peer Contact Handbook, Resolve Through Sharing Bereavement Services handouts, and our local perinatal bereavement program/community resources and referral information (see First Candle/SIDS Alliance, 2008; Midland & Limbo, 2004). Since
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Based on the preferences of the parent receiving support, the relationship would ideally continue to develop via phone calls, e-mail, face-to-face visits, notes/cards, and/or accompanying the parent to support group meetings
Photo © Highwaystarz Photography / thinkstockphotos.com
the development of our training manual, Resolve Through Sharing revised its manual in 2012, and the manual for First Candle/SIDS Alliance is currently under revision. Our training manual included the following content areas: grief process, complicated grief, pregnancy and neonatal loss, listening and communication skills, self-care, cultural and spiritual considerations, confidentiality, and professional referrals. The teaching format included opportunities for parents to share their stories, lecture, group discussion, dyads to practice communication skills, and role play. Additionally, participants were oriented to our hospital’s volunteer program, which
ensured compliance with the Health Insurance Portability and Accountability Act (HIPAA) and hospital safety procedures. At the conclusion of training, a closing ritual was held in which all participants lit a candle in memory of their own babies and in dedication to the work they were pledging to do, shared readings, and received a certificate of completion and honorary pin. After completing the training, the trained peer parents were ready to receive their newly bereaved parent referrals/ assignments. There are two ways peer parents could receive a newly bereaved parent to support: (a) the PSP is offered by staff as part of the overall perinatal support program to a newly bereaved parent during the initial invitation to program services, or (b) the PSP is offered at a later point in time if staff assesses that a parent would benefit from additional one-onone support. If a newly bereaved parent consented to peer support contact, staff would choose a peer parent whose situation was closely parallel (e.g., both the peer parent and recently bereaved parent experienced the premature death of one twin) and would contact the peer parent to assess availability. If the peer parent accepted the referral, he or she would receive a summary of the bereaved parent’s situation and preferred methods of contact and would be asked to make initial contact either by phone, e-mail, or hospital visit as soon as possible (preferably within 24–48 hours). Based on the preferences of the parent receiving support, the relationship would ideally
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continue to develop via phone calls, e-mail, face-to-face visits, notes/cards, and/or accompanying the parent to support group meetings. At the time of referral, staff emphasized the expectation of staying in contact with the PSP staff with questions, concerns, and updates. Follow-up with our peer parents remains an important part of the PSP. At semiannual intervals the PSP staff conducts follow-up meetings with peer parents. Meetings offer the opportunity for peer parents to network, share and normalize their experiences in the PSP, obtain educational and training updates on a requested topic (e.g., children/siblings and subsequent pregnancies), and receive feedback and support.
PSP staff members have also found follow-up meetings to be instrumental in evaluating the program, making adjustments to the recruitment and training process as well as to the PSP as a whole. In addition to the follow-up meetings with trained parents, it is important to conduct trainings for new peer parents at regular intervals to replenish the pool of trained parents, because circumstances for peer parents change (parents may no longer be able to serve in the role of a peer parent, they may be assigned to other parents and not able to take new referrals, etc.). To keep our PSP viable, we have conducted four training sessions for new peer parents since its 2010 inception.
table 1
Participant Demographics Peer Parents (n = 13)
Parents Receiving Support (n = 11)
n
%
n
%
Male
1
7.7
0
0.0
Female
12
92.3
11
100.0
White
12
92.3
9
81.8
Hispanic
0
0.0
0
0.0
African American
0
0.0
2
18.2
Asian
0
0.0
0
0.0
Biracial
1
7.7
0
0.0
Yes
16
100.0
6
54.5
No
0
0.0
5
45.5
Demographics Gender
Race
Living children
Parents Receiving Support (n = 11)
Peer Parents (n = 18)
Type of perinatal lossa Premature death of one twin
2
11.1
1
9.1
Premature death of both twins
0
0.0
2
18.2
Newborn death
2
11.1
0
0.0
Single stillbirth
4
0.0
1
9.1
Single miscarriage
4
22.2
2
18.2
Multiple miscarriages
6
54.5
5
45.5
a
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Cumulative type of loss is reported for peer parents; only most recent loss/primary loss is reported for parents receiving support.
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table 2
Participant Themes Parents Receiving Support
Peer Parents Contact
• Time until first contact ranged from 1 day (still in hospital) to 2 weeks. • Frequency varied. “Every 2–3 weeks. [The] perfect amount.” “She told me to contact her as much as I needed.” • Most common method of communication was telephone, followed by e-mail.
• Time until first contact ranged from 1 day to 1 week. • M ore frequent in beginning; less frequent as time went on. • R elationships varied over time. Some parents had ongoing relationships for several months; others reported they never were able to make contact. • M ost common method of communication was telephone, followed by sending a card in mail, meeting at support group, meeting in person, and e-mail.
Positive Aspects of Engaging in PSP • Talking to someone who went through similar experience; normalized emotions and reduced sense of isolation. “Having a peer parent helped normalize my feelings, such as anger, when others were telling me to move on and that I was stuck.” “[The program] has had a major impact. . . . By talking to and hearing others’ stories it helps us not feel so alone in our grief.”
• Able to “give back” by using own loss to help others. “The most rewarding part has been supporting someone else in a time of loss and feeling like I am giving back.” • S tay connected with other parents they met through the perinatal bereavement support program. “Being able to give back to a program that is such an important support for my lifelong grief journey after a loss of a child has been the most rewarding aspect of participating in the [PSP].” • P articipation in the PSP led to legacy creation of the bereaved child. It allowed participants to “honor [their] baby.”
Difficulty With Engaging in PSP • Not being emotionally ready to receive support caused limited to no contact. “Talking to a stranger was kind of awkward; it was awkward to cry on the phone. I wasn’t open to talking at first, but looking back now two years later I feel like I just wasn’t in the right place.”
• P erceived the newly bereaved parents’ emotional uncertainty and ambivalence toward the program. Led to difficulty navigating communication with assigned parent; wanted to respect boundaries, yet wanted to provide support. Peer parents reported they did not know how much to continue attempting to connect when contact was not reciprocated: “How much do I push?” • N avigation of faith between parents if they did not know faith background of assigned parent or if faith backgrounds differed, especially for parents who understood their faith to be important for their own healing.
continued on next page
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table 2
Participant Themes (continued) Parents Receiving Support
Peer Parents Suggestions for PSP
• In-person meetings. “I wanted to meet in person but my peer parent was unable to do this. She only had the time to e-mail. This was not the experience that I had hoped for so I let our communication go.” • Attend support groups with peer parents (facilitates in-person connection). “It would be helpful to have peer parents make the effort to go to group with parents the first time together so you have the face-to-face connection. That is important.”
• In-person meetings. One peer parent who met her assigned parent in person reported that once a face-to-face connection was established, all other contact became easier: “It really opened this up.” • Varied forms of communication by peer parents. “The first call to them is hard; it’s hard even for us, so options for communication are important.
• Varied forms of communication by peer parent. “I think [the PSP] is the type of resource that needs to be flexible because each person grieves differently.”
Methods At the time of the evaluation, the PSP consisted of 16 peer parents; 13 (86.7%) of these parents provided feedback for the evaluation. The parents receiving support consisted of 17 women; 11 (64.7%) of these parents provided feedback for the evaluation. See Table 1 for participant demographics.
experience participating in the program, (c) recommendations for improving the program, and (d) advice participants would give to new peer parents. The questions for the parents receiving support covered the following topics: (a) contact between parents (type and frequency), (b) experience participating in the program, (c) perceived helpfulness of the program and peer parents, and (d) advice for peer parents.
Data Collection
Data Analysis
We submitted the program evaluation for institutional review board review and received an exempt status. To evaluate the PSP’s services, data were collected from both peer parents and parents receiving support. From the peer parents, data were first collected by means of a focus group. Two PSP coordinators (the first and second authors) recruited and conducted one focus group with six peer parents to discuss their experiences in the PSP. At the end of the group, peer parents also completed a short survey. (For scheduling reasons parents receiving support were unable to meet for a focus group.) For peer parents who did not attend the focus group and for all participating parents receiving support, a survey of open-ended responses was offered to be completed either online or over the phone. When possible, questions were asked over the phone to elicit more in-depth responses. No names were linked to participant responses to maintain confidentiality. The questions for the peer parents in the focus group and survey covered the following topics: (a) contact between parents (type and frequency), (b)
Focus group data were analyzed qualitatively using descriptive thematic analysis (Alhojailan, 2012). Themes within the data were identified and reported so that information obtained from participants was organized in a way that provided rich detail. Thematic analysis was conducted by the first author and confirmed by the second author; both agreed on the themes that emerged. A similar process was completed with the descriptive information obtained from participants who were unable to attend focus groups and therefore completed surveys. Themes from peer parent survey data supported those of focus groups; thus, this information was combined.
Participants
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Results Four overlapping themes emerged for the groups. Both groups discussed the logistics of making contact with their assigned parent, their respective positive aspects and difficulties with engaging with the PSP, and suggestions. Themes are discussed in Table 2 with participant quotations provided.
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Discussion
This program evaluation suggests that a PSP can be an important service available to parents who have experienced a perinatal loss. As one peer parent described, “It provides another opportunity and place for people to receive support because they don’t always know what or where they will need it.” Even though not all parents who were initially open to being assigned a peer parent ultimately used the services, it was an avenue of support that they could count on if and when they were open to it. Although there were benefits to the peer parents and the parents receiving support, program developers should also be aware of the potential barriers to its access and benefits.
Recommendations for PSP Development For others who may wish to develop a PSP for perinatal loss, we offer the following recommendations based on our program
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evaluation findings and experiences with our PSP. They include four recommendations: (a) plan for face-to-face contact, (b) provide options for preferred contact, (c) plan for continued communication between PSP coordinators and parents, and (d) conduct targeted recruitment of fathers.
Importance of Face-to-Face Contact As indicated by participants, it is important to encourage parents to meet in person to create a bond and to sustain the supportive peer relationship. If your PSP is in conjunction with a peer support group, it can be helpful for peer parents to attend group sessions with their assigned parent to facilitate in-person meeting and help ease anxieties about attending. This can be an especially important aspect for peer parents to consider if the parent they support does not have a spouse/significant other with whom to attend the support group.
Provide Options for Preferred Contact When the peer parent makes contact with the assigned parent, it is preferable to provide options for methods of communication. A peer parent might offer a phone number or e-mail address and/or suggest meeting at a support group or for coffee. This allows options for developing the relationship and might increase the likelihood of using the support, because the chance of matching the preferred method of communication for the grieving parent in that moment has been increased. The type of communication that fits for one parent may look different for another, so various methods of communication should be considered.
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Photo © Cathy Yeulet / thinkstockphotos.com
Peer parents should not be left without support when given their assignment and should be given the message that the program staff is there to help support the PSP relationship
Continued Communication Between PSP Coordinators and Parents As indicated by peer parents and parents receiving support, the relationship did not always develop seamlessly. During the course of parents’ participation in the PSP, especially when parents are having difficulty with an assigned relationship, it is important for coordinators to remain informed. First, during the course of an active parent relationship, coordinators should emphasize to peer parents the importance of notifying coordinators if newly bereaved parents are exhibiting red flags that indicate a professional referral is needed. Peer parents are not licensed mental health professionals and should not attempt to provide services beyond their training as lay peer parents with experiential knowledge. Additionally, if there are other difficulties within the relationship (e.g., difficulty navigating coordination/communication), program staff can seek to help parents. Peer parents should not be left without support when given their assignment and should be given the
and recommendations may not be suitable. The recruitment of fathers into a PSP should also be handled differently (Aho, Astedt-Kurki, Tarkka, & Kaunonen, 2011). Based on the acknowledgment of the absence of fathers participating in our PSP and feedback received, we engaged in the following steps to specifically recruit fathers into our program: peer parent fathers were invited to our bereavement program’s support groups to personally meet newly bereaved fathers, invitations to receive a peer parent were extended to fathers even months after the loss when fathers may be more ready to talk (Aho et al., 2011), and a husband–wife team was developed to support newly bereaved couples interested in peer support services. These steps have since resulted in two fathers receiving support within our PSP; one father received one-on-one peer support, and one father received support as part of the husband–wife team. These are potential recommendations other PSPs may consider in an effort to reach out to grieving fathers.
PSPs can offer benefits to parents receiving support and parents providing support while providing nurses and other clinicians an effective way to meet the needs of perinatally bereaved parents message that the program staff is there to help support the PSP relationship. Staff can ameliorate difficulties with coordination/contact between parents so the burden is not solely on the peer parent to navigate. Second, because matching parents on demographic characteristics is of importance, program coordinators who facilitate assignments should remain current on the peer parents’ demographics, because these can change over time. As an example, a peer parent may become pregnant while volunteering. With news of a peer parent’s pregnancy, a PSP coordinator should consider postponing matching, because it may be challenging for newly bereaved parents to receive support from a pregnant parent when they are emotionally vulnerable.
Targeted Recruitment of Fathers At the time of the present study there were no fathers receiving support through our PSP, despite having a father available as a peer parent. Therefore, the following recommendation comes from an absence of data on the topic from the present evaluation. Indeed, it is understood that fathers have unique needs after a perinatal loss, and therefore their grief may present differently than does the grief of mothers. For this reason, results generated from our review may not be generalizable to fathers,
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Evaluation Limitations and Strengths As is the case with qualitative studies, generalizations to the wider population cannot be made from the findings of our program evaluation. Furthermore, it should be noted that the participants in our evaluation were primarily female. At the time of the evaluation, this was representative of the composition of our PSP parents. For this reason, it would be difficult to generalize our findings to PSPs focused on fathers. Additionally, because the PSP was complementary to our overall perinatal bereavement support program, other organizations with a different structure may find a different experience if their PSP is not part of an overall support program or if their overall support program includes different services. Furthermore, parents who participated in the evaluation were those parents willing to provide their opinions to the PSP coordinators. We do not know what can be said for those parents who did not respond to requests for participation in the evaluation or those who declined initial participation in the PSP. Their absent data could provide program developers with further information on how to improve PSPs and potentially reach more bereaved parents. The current evaluation, however, has numerous strengths. Because of its qualitative design, researchers were able to hear
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the voices of participants. Additionally, we are aware of no other evaluation that gains access to participants providing and receiving support through a PSP for perinatally bereaved parents. To our knowledge, the extant literature has provided details about PSPs from the perspective of the coordinators/ evaluators. Accessing the perspectives of peer parents and parents receiving support provided necessary data and a richness to the evaluation.
Conclusion Overall, the findings from our evaluation suggest that a need exists for a PSP for perinatal bereavement. Programs like ours can be implemented in other health care settings within an existing perinatal loss support program or as a primary service to target perinatally bereaved parents. Indeed, PSPs can offer benefits to parents receiving support and parents providing support while providing nurses and other clinicians an effective way to meet the needs of perinatally bereaved parents. NWH
Acknowledgment We wish to thank the parents who assisted with the program evaluation; Cathy Blanford, MEd, for her integral involvement in the development of the PSP and training of the peer parents, as well as her assistance with the preparation of this manuscript; and Karen Kavanaugh, PhD, for her assistance with the preparation of this manuscript.
Hurst, I. (2006). One size does not fit all: Parents’ evaluations of a support program in a newborn intensive care nursery. Journal of Perinatal & Neonatal Nursing, 20(3), 252–261. Kobler, K., & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25(1), 32–41. doi:10.1097/JPN.0b013e3181fb592e Koopmans, L., Wilson, T., Cacciatore, J., Flenady, V. (2013). Support for mothers, fathers and families after perinatal death. Cochrane Database of Systematic Reviews 2013(6), CD000452. doi:10.1002/14651858.CD000452.pub3 Lapierre, J., Perreault, M., & Goulet, C. (1995). Prenatal peer counseling: An answer to the persistent difficulties with prenatal care for low-income women. Public Health Nursing, 12(1), 53–60. doi:10.1111/j.1525-1446.1995.tb00123.x Leger, J., & Letourneau, N. (2015). New mothers and postpartum depression: A narrative review of peer support intervention studies. Health & Social Care in the Community, 23(4), 337–348. doi:10.1111/hsc.12125 Limbo, R., & Kobler, K. (2010). The tie that binds: Relationships in perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing, 35(6), 316–321. doi:10.1097/ NMC.0b013e3181f0eef8 MacDorman, M. F., Hoyert, D. L., & Mathew, T. J. (2013). Recent declines in infant mortality in the United States, 2005–2011. NCHS Data Brief, 120, 1–8. MacDorman, M. F., & Kirmeyer, S. (2009). The challenge of fetal mortality. NCHS Data Brief, 16, 1–8. March of Dimes. (2012). Miscarriage. White Plains, NY: Author. Retrieved from http://www.marchofdimes.org/complications/ miscarriage.aspx
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Volume 20
Issue 2
Peer Support Program for
Parents Facing
Perinatal Loss
Rachel M. Diamond Rosmarie E. Roose
T
he death of a fetus or neonate can be one of the most profound traumatic
experiences for parents (Koopmans, Wilson, Cacciatore, & Flenady, 2013; Roose & Blanford, 2011). The magnitude of perinatal death is great, with about 1 million deaths occurring across the gestational stages each year (MacDorman & Kirmeyer, 2009). The most common type of loss is miscarriage (i.e., loss occurring at <20 weeks gestation), which occurs in approximately 10% to 15% of clinically recognized pregnancies; stillbirth (i.e., loss at ≥20 weeks gestation) accounts for approximately 26,000 deaths, and neonatal death (i.e., neonate lives <28 days) occurs in 4.04 per 1,000 live births (MacDorman, Hoyert, & Mathew, 2013; MacDorman & Kirmeyer, 2009; March of Dimes, 2012). Abstract: The purpose of this program evaluation was to understand the perspectives of peer parents and parents receiving support within a peer support program for perinatal bereavement at a midsized hospital within the midwestern United States. To document participants’ perceptions of the program, a focus group was conducted with peer parents, and surveys were completed by both peer parents and parents receiving support. In this article we review our model of a peer support program for perinatal bereavement and report on parents’ evaluation of the program. Recommendations through which other organizations can develop peer support programs for parents who have experienced a perinatal loss are provided. http://dx.doi.org/10.1016/j.nwh.2016.02.001 Keywords: bereavement support | miscarriage | peer support program | perinatal loss | stillbirth
Peer Support for Bereaved Parents Peer support is a salient concept for the nursing profession, because it is a means of effectively having lay peers with firsthand knowledge provide support-enhancing interventions to improve the quality of care and outcomes (Dennis et al., 2009). PSPs have been used in a variety of populations. For example, they have been used with parents after the unexpected death of an infant from sudden infant death syndrome or other sudden unexpected infant death (First Candle, 2015) and have been shown to improve outcomes in prenatal care among women with low income (Lapierre, Perreault, & Goulet, 1995), women suffering from postpartum depression (Leger & Letourneau, 2015), and parents with an infant in the NICU (Hurst, 2006; Rossman, Greene, & Meier, 2015). Given that peer support has been associated with benefits for a variety of populations and needs, it would seem likely that perinatally bereaved parents could also benefit. Perinatal loss has been described as an “invisible loss,” meaning it is one that is not often shared or recognized by others (Paul et al., 2010). When people experience distressing events, such as perinatal loss, they often reach out to trusted others for comfort and support. However, perinatally bereaved parents have reported that their grief is often not recognized by family and/or friends (Gold, Boggs, Mugisha, & Palladino, 2012). Such an experience can leave parents feeling isolated and as if their emotional distress is unwarranted. Additionally, these parents face a unique type of grief, which involves their
Rachel M. Diamond, PhD, LMFT, is assistant professor in the Department of Human Development and Family Studies, Marriage & Family Therapy Program, at the University of Saint Joseph in West Hartford, CT. Rosmarie E. Roose, MSN, RNC, is OB nurse navigator in the Maternal Fetal Medicine Center and clinical coordinator for the Still Missed Perinatal Bereavement Program at Adventist Midwest Region/Adventist Hinsdale Hospital in Hinsdale, IL. The authors report no conflicts of interest or relevant financial relationships. Address correspondence to: [email protected].
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expectations and fantasies about the future turning into despair and grief about their reality (Wright, Shea, & Gallagher, 2014). For these reasons, perinatally bereaved parents would seem especially well suited to being connected to a PSP that includes others who have experienced a similar loss. One well-developed description of a PSP specific to perinatally bereaved parents is currently available. Share Pregnancy & Infant Loss Support, Inc. (“Share”), a national organization for perinatal bereavement care, has developed a program called Caring Companion to educate and prepare parent volunteers to provide peer support to families experiencing perinatal loss. Companions are parents who have also experienced a perinatal loss and “wish to guide and support a newly bereaved family through their journey, from the hospital bedside through the grieving process” (Share Pregnancy & Infant Loss Support, 2015). Although Share provides descriptions of its PSP for perinatally bereaved parents, there is still an absence of information about the perceived effectiveness of PSPs by the trained peer parents or the parents receiving support. Thus, the focus of this article is to review the development of our model of a PSP for perinatal bereavement and to report on parents’ evaluations of the program. With this information, our hope was to provide a program model and recommendations through which other organizations can develop PSPs for parents who have experienced perinatal loss.
Developing a PSP Because we recognized the value of peer support within our perinatal bereavement support program that started roughly 28 years ago (Roose & Blanford, 2011), in 2010 we embarked on the development of a PSP. Our PSP is based in a Level III hospital with three referring hospitals in a suburban area of a large midwestern U.S. city. Furthermore, our PSP includes perinatally bereaved families within our network and families referred from the surrounding community. Each month an average of 27 families who experienced a perinatal loss are referred by hospital staff to our comprehensive perinatal bereavement support program for an initial assessment/intake call. During the initial contact with the family, the meaning of the loss, with respect to the applicability of support services, is assessed. If the services are appropriate, the grieving family is informed of the types of services offered and invited to be a part of the perinatal bereavement support program. Services in the program include supportive phone calls made by staff, a quarterly newsletter, support groups for parents and grandparents, annual memorial events, and the PSP. In general, about 25% to 30% of the referred families opt to receive some form of support through our program. Our goal when creating the PSP was to offer recently bereaved parents another option for receiving supportive services
nwhjournal.org
Opening photos: Left © fotohunter, Right © Stockbyte / Both from thinkstockphotos.com
Because parents may face immense grief on multiple levels, many families seek complementary supportive care in addition to traditional medical treatment (Roose & Blanford, 2011). Nurses and other clinicians are faced with the challenge of providing perinatal bereavement care to grieving parents (Kobler & Limbo, 2011; Limbo & Kobler, 2010). Peer support programs (PSPs), in which a recently bereaved parent receives one-onone support from a trained “veteran” parent, can serve as one resource. PSPs can provide an important service to address the comprehensive needs of families by validating and normalizing the experiences of grieving parents. Although the benefits of PSPs for parents who have experienced perinatal loss could be great, to date PSPs’ benefits and limitations for this population have not been well documented.
within our comprehensive perinatal bereavement support program. The PSP would do this by (a) recruiting and training qualified parents who could serve as peer parents; (b) formalizing peer connections by assigning a newly bereaved parent to a trained peer parent; and (c) having program staff maintain a professional supervisory role to peer parents by providing support, education, and evaluation throughout the PSP relationship.
staff asked parents whom they identified as having qualities necessary for a peer parent (e.g., program staff had seen a parent demonstrate supportive listening skills toward other parents in monthly support group meetings) to participate. Before completing the training, interested parents attended an orientation/information session to acquaint them with our PSP. At this session they were provided information about the expectations for being peer parents, the required training, and the referral process to connect peer parents to newly bereaved parents. During the session, staff further evaluated the interested parents’ readiness. In addition, parents were asked to engage in self-reflection to assess their own readiness to serve as a peer parent. Together, staff and interested parents assessed if the parents were ready to be emotionally present for newly bereaved parents as well as physically present for the time commitment needed to accept the role of peer parent in the near future. We understand the assessment of peer parents to be a continuous process; assessment is not done solely for gate-keeping and initial evaluation of readiness. Indeed, assessment of the emotional state of peer parents and their ability to manage taking on newly bereaved parents is important throughout the program. With that being said, upon agreement by staff and parents that parents were ready to engage in the training, parents were invited to attend the PSP training sessions. All
Photo © iStock Collection / thinkstockphotos.com
Perinatal loss has been described as an “invisible loss,” meaning it is one that is not often shared or recognized by others The recruitment and training of interested peer parent candidates is a crucial element of the PSP. We recognized peer parents as being not counselors but parents who were at least one year from their own loss. In this time, the recruited parents were those who had developed insight into the grieving process, had resolved their own grief to the point where they could offer others a compassionate listening ear, and were able to provide helpful information from their own experience. There were two ways parents were recruited to be peer parents for the PSP: (a) a parent expressed interest to program staff and met the before-mentioned criteria or (b) program
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candidates for the program were required to attend the PSP training developed and conducted by PSP staff. The PSP training, conducted by two PSP staff members, a counselor, and a registered nurse, was either one 6-hour session or two 3-hour sessions. The training manual, which contains standards of perinatal bereavement care, was compiled from material adapted from First Candle/SIDS Alliance Peer Contact Handbook, Resolve Through Sharing Bereavement Services handouts, and our local perinatal bereavement program/community resources and referral information (see First Candle/SIDS Alliance, 2008; Midland & Limbo, 2004). Since
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Based on the preferences of the parent receiving support, the relationship would ideally continue to develop via phone calls, e-mail, face-to-face visits, notes/cards, and/or accompanying the parent to support group meetings
Photo © Highwaystarz Photography / thinkstockphotos.com
the development of our training manual, Resolve Through Sharing revised its manual in 2012, and the manual for First Candle/SIDS Alliance is currently under revision. Our training manual included the following content areas: grief process, complicated grief, pregnancy and neonatal loss, listening and communication skills, self-care, cultural and spiritual considerations, confidentiality, and professional referrals. The teaching format included opportunities for parents to share their stories, lecture, group discussion, dyads to practice communication skills, and role play. Additionally, participants were oriented to our hospital’s volunteer program, which
ensured compliance with the Health Insurance Portability and Accountability Act (HIPAA) and hospital safety procedures. At the conclusion of training, a closing ritual was held in which all participants lit a candle in memory of their own babies and in dedication to the work they were pledging to do, shared readings, and received a certificate of completion and honorary pin. After completing the training, the trained peer parents were ready to receive their newly bereaved parent referrals/ assignments. There are two ways peer parents could receive a newly bereaved parent to support: (a) the PSP is offered by staff as part of the overall perinatal support program to a newly bereaved parent during the initial invitation to program services, or (b) the PSP is offered at a later point in time if staff assesses that a parent would benefit from additional one-onone support. If a newly bereaved parent consented to peer support contact, staff would choose a peer parent whose situation was closely parallel (e.g., both the peer parent and recently bereaved parent experienced the premature death of one twin) and would contact the peer parent to assess availability. If the peer parent accepted the referral, he or she would receive a summary of the bereaved parent’s situation and preferred methods of contact and would be asked to make initial contact either by phone, e-mail, or hospital visit as soon as possible (preferably within 24–48 hours). Based on the preferences of the parent receiving support, the relationship would ideally
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continue to develop via phone calls, e-mail, face-to-face visits, notes/cards, and/or accompanying the parent to support group meetings. At the time of referral, staff emphasized the expectation of staying in contact with the PSP staff with questions, concerns, and updates. Follow-up with our peer parents remains an important part of the PSP. At semiannual intervals the PSP staff conducts follow-up meetings with peer parents. Meetings offer the opportunity for peer parents to network, share and normalize their experiences in the PSP, obtain educational and training updates on a requested topic (e.g., children/siblings and subsequent pregnancies), and receive feedback and support.
PSP staff members have also found follow-up meetings to be instrumental in evaluating the program, making adjustments to the recruitment and training process as well as to the PSP as a whole. In addition to the follow-up meetings with trained parents, it is important to conduct trainings for new peer parents at regular intervals to replenish the pool of trained parents, because circumstances for peer parents change (parents may no longer be able to serve in the role of a peer parent, they may be assigned to other parents and not able to take new referrals, etc.). To keep our PSP viable, we have conducted four training sessions for new peer parents since its 2010 inception.
table 1
Participant Demographics Peer Parents (n = 13)
Parents Receiving Support (n = 11)
n
%
n
%
Male
1
7.7
0
0.0
Female
12
92.3
11
100.0
White
12
92.3
9
81.8
Hispanic
0
0.0
0
0.0
African American
0
0.0
2
18.2
Asian
0
0.0
0
0.0
Biracial
1
7.7
0
0.0
Yes
16
100.0
6
54.5
No
0
0.0
5
45.5
Demographics Gender
Race
Living children
Parents Receiving Support (n = 11)
Peer Parents (n = 18)
Type of perinatal lossa Premature death of one twin
2
11.1
1
9.1
Premature death of both twins
0
0.0
2
18.2
Newborn death
2
11.1
0
0.0
Single stillbirth
4
0.0
1
9.1
Single miscarriage
4
22.2
2
18.2
Multiple miscarriages
6
54.5
5
45.5
a
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Cumulative type of loss is reported for peer parents; only most recent loss/primary loss is reported for parents receiving support.
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table 2
Participant Themes Parents Receiving Support
Peer Parents Contact
• Time until first contact ranged from 1 day (still in hospital) to 2 weeks. • Frequency varied. “Every 2–3 weeks. [The] perfect amount.” “She told me to contact her as much as I needed.” • Most common method of communication was telephone, followed by e-mail.
• Time until first contact ranged from 1 day to 1 week. • M ore frequent in beginning; less frequent as time went on. • R elationships varied over time. Some parents had ongoing relationships for several months; others reported they never were able to make contact. • M ost common method of communication was telephone, followed by sending a card in mail, meeting at support group, meeting in person, and e-mail.
Positive Aspects of Engaging in PSP • Talking to someone who went through similar experience; normalized emotions and reduced sense of isolation. “Having a peer parent helped normalize my feelings, such as anger, when others were telling me to move on and that I was stuck.” “[The program] has had a major impact. . . . By talking to and hearing others’ stories it helps us not feel so alone in our grief.”
• Able to “give back” by using own loss to help others. “The most rewarding part has been supporting someone else in a time of loss and feeling like I am giving back.” • S tay connected with other parents they met through the perinatal bereavement support program. “Being able to give back to a program that is such an important support for my lifelong grief journey after a loss of a child has been the most rewarding aspect of participating in the [PSP].” • P articipation in the PSP led to legacy creation of the bereaved child. It allowed participants to “honor [their] baby.”
Difficulty With Engaging in PSP • Not being emotionally ready to receive support caused limited to no contact. “Talking to a stranger was kind of awkward; it was awkward to cry on the phone. I wasn’t open to talking at first, but looking back now two years later I feel like I just wasn’t in the right place.”
• P erceived the newly bereaved parents’ emotional uncertainty and ambivalence toward the program. Led to difficulty navigating communication with assigned parent; wanted to respect boundaries, yet wanted to provide support. Peer parents reported they did not know how much to continue attempting to connect when contact was not reciprocated: “How much do I push?” • N avigation of faith between parents if they did not know faith background of assigned parent or if faith backgrounds differed, especially for parents who understood their faith to be important for their own healing.
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table 2
Participant Themes (continued) Parents Receiving Support
Peer Parents Suggestions for PSP
• In-person meetings. “I wanted to meet in person but my peer parent was unable to do this. She only had the time to e-mail. This was not the experience that I had hoped for so I let our communication go.” • Attend support groups with peer parents (facilitates in-person connection). “It would be helpful to have peer parents make the effort to go to group with parents the first time together so you have the face-to-face connection. That is important.”
• In-person meetings. One peer parent who met her assigned parent in person reported that once a face-to-face connection was established, all other contact became easier: “It really opened this up.” • Varied forms of communication by peer parents. “The first call to them is hard; it’s hard even for us, so options for communication are important.
• Varied forms of communication by peer parent. “I think [the PSP] is the type of resource that needs to be flexible because each person grieves differently.”
Methods At the time of the evaluation, the PSP consisted of 16 peer parents; 13 (86.7%) of these parents provided feedback for the evaluation. The parents receiving support consisted of 17 women; 11 (64.7%) of these parents provided feedback for the evaluation. See Table 1 for participant demographics.
experience participating in the program, (c) recommendations for improving the program, and (d) advice participants would give to new peer parents. The questions for the parents receiving support covered the following topics: (a) contact between parents (type and frequency), (b) experience participating in the program, (c) perceived helpfulness of the program and peer parents, and (d) advice for peer parents.
Data Collection
Data Analysis
We submitted the program evaluation for institutional review board review and received an exempt status. To evaluate the PSP’s services, data were collected from both peer parents and parents receiving support. From the peer parents, data were first collected by means of a focus group. Two PSP coordinators (the first and second authors) recruited and conducted one focus group with six peer parents to discuss their experiences in the PSP. At the end of the group, peer parents also completed a short survey. (For scheduling reasons parents receiving support were unable to meet for a focus group.) For peer parents who did not attend the focus group and for all participating parents receiving support, a survey of open-ended responses was offered to be completed either online or over the phone. When possible, questions were asked over the phone to elicit more in-depth responses. No names were linked to participant responses to maintain confidentiality. The questions for the peer parents in the focus group and survey covered the following topics: (a) contact between parents (type and frequency), (b)
Focus group data were analyzed qualitatively using descriptive thematic analysis (Alhojailan, 2012). Themes within the data were identified and reported so that information obtained from participants was organized in a way that provided rich detail. Thematic analysis was conducted by the first author and confirmed by the second author; both agreed on the themes that emerged. A similar process was completed with the descriptive information obtained from participants who were unable to attend focus groups and therefore completed surveys. Themes from peer parent survey data supported those of focus groups; thus, this information was combined.
Participants
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Results Four overlapping themes emerged for the groups. Both groups discussed the logistics of making contact with their assigned parent, their respective positive aspects and difficulties with engaging with the PSP, and suggestions. Themes are discussed in Table 2 with participant quotations provided.
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Discussion
This program evaluation suggests that a PSP can be an important service available to parents who have experienced a perinatal loss. As one peer parent described, “It provides another opportunity and place for people to receive support because they don’t always know what or where they will need it.” Even though not all parents who were initially open to being assigned a peer parent ultimately used the services, it was an avenue of support that they could count on if and when they were open to it. Although there were benefits to the peer parents and the parents receiving support, program developers should also be aware of the potential barriers to its access and benefits.
Recommendations for PSP Development For others who may wish to develop a PSP for perinatal loss, we offer the following recommendations based on our program
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evaluation findings and experiences with our PSP. They include four recommendations: (a) plan for face-to-face contact, (b) provide options for preferred contact, (c) plan for continued communication between PSP coordinators and parents, and (d) conduct targeted recruitment of fathers.
Importance of Face-to-Face Contact As indicated by participants, it is important to encourage parents to meet in person to create a bond and to sustain the supportive peer relationship. If your PSP is in conjunction with a peer support group, it can be helpful for peer parents to attend group sessions with their assigned parent to facilitate in-person meeting and help ease anxieties about attending. This can be an especially important aspect for peer parents to consider if the parent they support does not have a spouse/significant other with whom to attend the support group.
Provide Options for Preferred Contact When the peer parent makes contact with the assigned parent, it is preferable to provide options for methods of communication. A peer parent might offer a phone number or e-mail address and/or suggest meeting at a support group or for coffee. This allows options for developing the relationship and might increase the likelihood of using the support, because the chance of matching the preferred method of communication for the grieving parent in that moment has been increased. The type of communication that fits for one parent may look different for another, so various methods of communication should be considered.
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Photo © Cathy Yeulet / thinkstockphotos.com
Peer parents should not be left without support when given their assignment and should be given the message that the program staff is there to help support the PSP relationship
Continued Communication Between PSP Coordinators and Parents As indicated by peer parents and parents receiving support, the relationship did not always develop seamlessly. During the course of parents’ participation in the PSP, especially when parents are having difficulty with an assigned relationship, it is important for coordinators to remain informed. First, during the course of an active parent relationship, coordinators should emphasize to peer parents the importance of notifying coordinators if newly bereaved parents are exhibiting red flags that indicate a professional referral is needed. Peer parents are not licensed mental health professionals and should not attempt to provide services beyond their training as lay peer parents with experiential knowledge. Additionally, if there are other difficulties within the relationship (e.g., difficulty navigating coordination/communication), program staff can seek to help parents. Peer parents should not be left without support when given their assignment and should be given the
and recommendations may not be suitable. The recruitment of fathers into a PSP should also be handled differently (Aho, Astedt-Kurki, Tarkka, & Kaunonen, 2011). Based on the acknowledgment of the absence of fathers participating in our PSP and feedback received, we engaged in the following steps to specifically recruit fathers into our program: peer parent fathers were invited to our bereavement program’s support groups to personally meet newly bereaved fathers, invitations to receive a peer parent were extended to fathers even months after the loss when fathers may be more ready to talk (Aho et al., 2011), and a husband–wife team was developed to support newly bereaved couples interested in peer support services. These steps have since resulted in two fathers receiving support within our PSP; one father received one-on-one peer support, and one father received support as part of the husband–wife team. These are potential recommendations other PSPs may consider in an effort to reach out to grieving fathers.
PSPs can offer benefits to parents receiving support and parents providing support while providing nurses and other clinicians an effective way to meet the needs of perinatally bereaved parents message that the program staff is there to help support the PSP relationship. Staff can ameliorate difficulties with coordination/contact between parents so the burden is not solely on the peer parent to navigate. Second, because matching parents on demographic characteristics is of importance, program coordinators who facilitate assignments should remain current on the peer parents’ demographics, because these can change over time. As an example, a peer parent may become pregnant while volunteering. With news of a peer parent’s pregnancy, a PSP coordinator should consider postponing matching, because it may be challenging for newly bereaved parents to receive support from a pregnant parent when they are emotionally vulnerable.
Targeted Recruitment of Fathers At the time of the present study there were no fathers receiving support through our PSP, despite having a father available as a peer parent. Therefore, the following recommendation comes from an absence of data on the topic from the present evaluation. Indeed, it is understood that fathers have unique needs after a perinatal loss, and therefore their grief may present differently than does the grief of mothers. For this reason, results generated from our review may not be generalizable to fathers,
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Evaluation Limitations and Strengths As is the case with qualitative studies, generalizations to the wider population cannot be made from the findings of our program evaluation. Furthermore, it should be noted that the participants in our evaluation were primarily female. At the time of the evaluation, this was representative of the composition of our PSP parents. For this reason, it would be difficult to generalize our findings to PSPs focused on fathers. Additionally, because the PSP was complementary to our overall perinatal bereavement support program, other organizations with a different structure may find a different experience if their PSP is not part of an overall support program or if their overall support program includes different services. Furthermore, parents who participated in the evaluation were those parents willing to provide their opinions to the PSP coordinators. We do not know what can be said for those parents who did not respond to requests for participation in the evaluation or those who declined initial participation in the PSP. Their absent data could provide program developers with further information on how to improve PSPs and potentially reach more bereaved parents. The current evaluation, however, has numerous strengths. Because of its qualitative design, researchers were able to hear
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the voices of participants. Additionally, we are aware of no other evaluation that gains access to participants providing and receiving support through a PSP for perinatally bereaved parents. To our knowledge, the extant literature has provided details about PSPs from the perspective of the coordinators/ evaluators. Accessing the perspectives of peer parents and parents receiving support provided necessary data and a richness to the evaluation.
Conclusion Overall, the findings from our evaluation suggest that a need exists for a PSP for perinatal bereavement. Programs like ours can be implemented in other health care settings within an existing perinatal loss support program or as a primary service to target perinatally bereaved parents. Indeed, PSPs can offer benefits to parents receiving support and parents providing support while providing nurses and other clinicians an effective way to meet the needs of perinatally bereaved parents. NWH
Acknowledgment We wish to thank the parents who assisted with the program evaluation; Cathy Blanford, MEd, for her integral involvement in the development of the PSP and training of the peer parents, as well as her assistance with the preparation of this manuscript; and Karen Kavanaugh, PhD, for her assistance with the preparation of this manuscript.
Hurst, I. (2006). One size does not fit all: Parents’ evaluations of a support program in a newborn intensive care nursery. Journal of Perinatal & Neonatal Nursing, 20(3), 252–261. Kobler, K., & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25(1), 32–41. doi:10.1097/JPN.0b013e3181fb592e Koopmans, L., Wilson, T., Cacciatore, J., Flenady, V. (2013). Support for mothers, fathers and families after perinatal death. Cochrane Database of Systematic Reviews 2013(6), CD000452. doi:10.1002/14651858.CD000452.pub3 Lapierre, J., Perreault, M., & Goulet, C. (1995). Prenatal peer counseling: An answer to the persistent difficulties with prenatal care for low-income women. Public Health Nursing, 12(1), 53–60. doi:10.1111/j.1525-1446.1995.tb00123.x Leger, J., & Letourneau, N. (2015). New mothers and postpartum depression: A narrative review of peer support intervention studies. Health & Social Care in the Community, 23(4), 337–348. doi:10.1111/hsc.12125 Limbo, R., & Kobler, K. (2010). The tie that binds: Relationships in perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing, 35(6), 316–321. doi:10.1097/ NMC.0b013e3181f0eef8 MacDorman, M. F., Hoyert, D. L., & Mathew, T. J. (2013). Recent declines in infant mortality in the United States, 2005–2011. NCHS Data Brief, 120, 1–8. MacDorman, M. F., & Kirmeyer, S. (2009). The challenge of fetal mortality. NCHS Data Brief, 16, 1–8. March of Dimes. (2012). Miscarriage. White Plains, NY: Author. Retrieved from http://www.marchofdimes.org/complications/ miscarriage.aspx
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