Friedrichs, Judy B. MS, RN, FT, CPLC; Kobler, Kathie MS, APN, PCNS-BC, CHPPN; Roose, Rosmarie E. MSN, RNC; Meyer, Charlotte MS, RN; Schmitz, Nancy RN, CPLC; Kavanaugh, Karen PhD, RN, FAAN
Compassionate care for families experiencing pregnancy loss or newborn death is a standard of care in most healthcare institutions. Over 1,118,000 fetal deaths occur each year in the United States (Ventura, Curtin, Abma, & Henshaw, 2012); bereavement support is an essential aspect of quality care for these families (Gold, Dalton, & Schwenk, 2007; Harvey, Snowdon, & Elbourne, 2008; Roose & Blanford, 2011). Yet, delivering care and coordinating care for families facing loss can be challenging for individual institutions, due in part to often limited financial and personnel resources for maintaining bereavement support programs. In the mid-1980s, nurses in the Chicago area recognized that there were challenges to delivering bereavement care, and that bereavement coordinators were working in isolation, and therefore not able to share resources or maintain an accurate up-to-date list of follow-up support programs. In 1987 we formed The Alliance of Perinatal Bereavement Support Facilitators, described in this article.
An alliance is a voluntary, collaborative effort between individuals and/or organizations in which trusting relationships are cultivated. Alliances have been shown to offer opportunities for participants to combine resources and talents to achieve mutually compatible goals and interests (Butterfoss, Gilmore, et al., 2006; Day, 1995; Lambe, Spekman, & Hunt, 2002). Benefits of alliances or coalitions have been described in many areas, including workplace (Kennedy, 2000), health promotion (Gillies, 1998), advanced nursing practice (Shuler, Hunter, McDowell, & Shearer, 2000), asthma control (Krieger et al., 2006), diabetes care (Crespo, Shrewsberry, Cornelius-Averhart, & King, 2011), and improving health workforce diversity (Mittman & Sullivan, 2011).
Formation of “The Alliance”
The Alliance of Perinatal Bereavement Support Facilitators was created as a venue for information, support, education, and consultation for the many healthcare professionals who provide perinatal bereavement support in the Chicago area. We base our philosophy on the following core beliefs:
Belief in a regional standard of care;
Belief in the value of networking to share knowledge and resources;
Belief in a level of excellence for program coordinators;
Belief in respectful care of families;
Belief in the continuum of care from diagnosis through phases of bereavement.
The Alliance's vision is to be an example of a professional organization focused on meeting the needs of the pregnant woman and her family in times of crises from diagnosis through bereavement.
During the 1980s, many hospitals were initiating processes to meet the needs of women experiencing perinatal loss. Care was inconsistent, however, as very little evidence-based criteria were available at this time. In 1985, individuals who coordinated their institution's bereavement support programs were in a unique, often isolated role. Perinatal bereavement support was usually an extension of a nurse's job description or assimilated into the role of the chaplain or social worker assigned to the perinatal or neonatal units.
In an attempt to identify peers engaged in perinatal bereavement care, the primary author (Judy Friedrichs) began to look for validation of this work outside her own hospital. Similar to the need for collaboration felt by advanced practice nurses (Shuler et al., 2000), she had a strong desire to join forces with other perinatal bereavement support facilitators in the area. With the goal of creating professional connections, she made calls and sent letters to each area hospital in an effort to identify key personnel providing perinatal bereavement support. Through these inquiries she learned that other area perinatal bereavement professionals were eager to establish networking opportunities; thus the decision was made for the first face-to-face meeting of professionals all over Chicago interested in perinatal bereavement care.
Structure of The Alliance
Nine local leaders in perinatal bereavement work met in 1987, and drew upon several national resources as they envisioned the Chicago group's structure, including SHARE Pregnancy and Infant Loss (SHARE), Resolve Through Sharing (Bereavement Services), Mothers in Sympathy and Support (MISS Foundation), and Pregnancy and Infant Loss Center of Minnesota (PILC). During the first meeting, participants agreed on an important concept that Alliance leadership would come from within the group. Participants identified the need to share their policies, help each other with difficult situations, and establish a process for patient referrals to Alliance members' support groups. The initial Alliance participants recognized the importance of face-to-face meetings and decided to meet quarterly. One of our first group projects was to create a Resource List of all members that included contact information and each member's perinatal loss support group meeting information.
Early on, The Alliance addressed financial issues, planning their funding as key to sustainability (Butterfoss, Gilmore, et al., 2006; Rosenthal et al., 2006). Within the first year, additional hospitals joined The Alliance. The group decided on membership dues of $30 per year for each institution, which continues today. The members determined a name for the organization, The Alliance of Perinatal Bereavement Support Facilitators-Chicago Region. We chose a name that denoted the Chicago region and also envisioned a hoped-for national perinatal bereavement support organization.
Growth of The Alliance
By 1989, The Alliance had 45 members who believed the organization was poised to respond to national efforts in improving care for bereaved parents. To highlight The Alliance members' readiness for advocacy and support on a national level, that same year we joined hundreds of parents and professionals who gathered in Washington, DC for the International Pregnancy and Infant Loss Awareness weekend. The event, sponsored by PILC, brought attention to the presidential proclamation designating October as National Pregnancy and Infant Loss Awareness month. Alliance members also represented Chicago at the National Walk to Remember and organized a Walk to Remember for the Chicago area in 1992 honoring Sr. Jane Marie Lamb, cofounder of SHARE and a dear friend of The Alliance. The event served as a model for our members wishing to publicly acknowledge the families experiencing pregnancy loss and infant death. Alliance members have subsequently created events at their own hospitals such as butterfly releases, a memory tree, holiday ornaments, memorial services, and a grandparents' garden.
Growth and outreach to both the membership and the community continued by means of our first educational workshop held in 1993 and offered annually every October since that year. With nationally known keynote speakers, workshop revenues support The Alliance's mission to enhance the role of the perinatal support facilitator through education, mentoring, and community awareness.
In the early 1990s, Alliance leaders completed the following preliminary steps to apply for federal nonprofit status. We (a) formalized The Alliance's mission and vision statements; (b) crafted organizational bylaws; (c) appointed a Board of Directors, creating a formal layer of leadership for The Alliance; and (d) obtained a checking account in The Alliance's name. Although we received Not for Profit Corporation status, we decided not to apply for federal nonprofit status as a 501(c) (3) organization because the burdens of an extensive application process outweighed the benefits to the organization.
The Alliance Today
The Alliance's initial structure from 1987 remains in place today. Every Alliance quarterly meeting includes an educational component, such as a speaker or a video review that the host hospital, facility, or the group's chairperson organizes; a business section focused on the growth and health of the organization; a time for sharing clinical issues and concerns; and finally a section during which members share updates on their program's activities, challenges, and successes. Eventually the group created a quarterly newsletter, using minutes from each meeting, group updates from all hospitals and agencies in attendance, educational offerings, new resources, and any new developments or legislative issues related to perinatal loss. The Alliance chairperson serves as newsletter coordinator and initially contributed an editorial with each quarterly issue.
Quarterly Alliance meeting sites rotate between the suburbs and the city. The representative from the host site determines the meeting's educational offering and writes a guest editorial for the newsletter. This rotation of responsibilities contributes to a nonhierarchical leadership model, allows for a noncompetitive environment, and benefits Alliance members through a collaborative effort among members (Kennedy, 2000; Padget, Bekemeier, & Berkowitz, 2004).
Initially, most Alliance members were affiliated with hospital bereavement support programs and included nurses, social workers, chaplains, counselors, and physicians. A few members were from social service organizations and churches. As regional knowledge of The Alliance grew, membership expanded to include therapists, funeral directors, child-life specialists, adoption workers, and business personnel who have leadership roles in their organizations' bereavement support programs. Members from hospices have recently joined The Alliance, providing a new dimension in membership. Currently, Alliance members represent hospitals, hospices, social service agencies, funeral homes, a chapter of bereaved parents, a College of Nursing, and a bereavement photography service.
Ongoing Activities of The Alliance
The Alliance activities center around four main areas:
- Recognizing outstanding service to families
Topics of The Alliance's educational offerings, primarily the annual workshop and presentations at quarterly meetings, have become increasingly diverse and multifaceted during the organization's 26-year history. In the first years, presenters often gave book reviews or showed videos to introduce members to helpful resources for parents and staff. The evolution of educational offerings expanded to include guest speakers and Alliance members providing information on aspects of programs that were becoming broader and more complex. Examples of presentation topics included sharing programs and resources (i.e., packets, policies, meeting information, mementos, and keepsake ideas); an overview of local children's grief support programs; discharge education, follow-up of the grieving family using social media, and generational differences in staff education. The opportunity for members to network and share resources is an important activity within an alliance (Shuler et al., 2000).
The annual workshop, titled Spotlight on Support, is the year's premiere event. Planning for the workshop is done at each of the three preceding quarterly meetings, with an emphasis on topics that will benefit both The Alliance members and the community. The Alliance chairperson coordinates the workshop. Members identify topics of interest to the group, possible speakers, and a host site. Members also rotate responsibilities for workshop logistics such as communicating with the speaker, creating the brochure, registration, contact hour applications, site coordination, compiling workshop packets and evaluation summary.
Each year, members collectively update the Directory of Perinatal Bereavement Resources. This document contains a listing of members' contact information and support group dates and times. The Directory provides a mechanism for members to refer patients to support groups at other member hospitals. The Directory also includes a listing of local, statewide, and national resources, along with pertinent online resources for bereaved families.
New Alliance members receive welcome letters describing the organization's history and structure. The chair of each quarterly meeting invites new members to share experiences and ideas with the rest of the group. Doing so adds richness to each quarterly meeting and ultimately strengthens care provided to grieving families.
The Alliance has been influential in policy development, specifically related to respectful fetal disposition and burial. In 2000, The Alliance played an active role as state legislators passed new legislation requiring that all hospitals and clinics notify women experiencing a miscarriage (<20 weeks completed gestation) about their right to respectful disposition of the fetal remains. The Alliance supported the right of all women who miscarried to have a choice regarding fetal disposition by advocating for the bill and communicating with key state and local representatives. The legislation (210 ILCS 85/11.4) received rapid approval by the Illinois state House and Senate, passing with all of the bill's original content approved.
The Alliance provided leadership by educating hospital personnel responsible for completing the Fetal Death Disposition-Notification Form developed by the Illinois Department of Public Health, highlighting ways to respectfully counsel parents about fetal disposition choices, and best practice for completing the required documentation. Subsequently, one Alliance member (Rosie Roose) worked to eliminate the requirement of individual fetal death certificates for hospital disposition of fetal remains <20 weeks' gestation. With the support of The Alliance membership, a physician champion, and the Illinois Medical Society, a new bill passed in 2009, allowing for respectful group burial or cremation of only fetal remains after miscarriage. Prior to the passage of this bill, Illinois state law required an individual death certificate for each miscarried fetus. Parents continue to have an option for private burial or cremation, which still requires individual death certificate. Hospitals statewide are now able to specifically define and offer processes for respectful disposition of fetal remains less than 20 weeks gestation due in part to the significant contribution of work done by The Alliance membership.
Recognizing Outstanding Service in the Community
In 2010, The Alliance members decided to create a mechanism to honor individuals or companies who provide exceptional perinatal bereavement care. Using agreed upon criteria, Alliance members nominate and vote for the recipient who receives a plaque and acknowledgement at the annual workshop. Named after Bruce Conley, a compassionate and innovative funeral director, this award recognizes best practices in the community.
Ongoing Benefits of Membership
The ongoing support and networking opportunities within The Alliance continue to benefit individual members and their programs. Coming together regularly with colleagues who share common vision and goals motivates members to continue achieving excellence in bereavement care. Over the years, The Alliance has had the privilege of mentoring new health professionals to the work of perinatal bereavement care. One member stated, “When I was new to the field of perinatal loss, participation in the Alliance was an important way for me to learn more about the issues involved and to network with others doing similar work.”
In addition to the invaluable networking, rotating the site of the meetings on a quarterly basis offers members the opportunity to see other facilities and programs in action. One member noted, “Onsite visits to see memorial gardens, palliative care units, and memorial quilts were inspirational, educational, and motivational.” Members have also identified additional benefits of The Alliance:
- collaboration with a group of caring, committed professionals;
- a safe haven in which to share successes and failures;
- the potential for seamless care across institutions because of the referral system;
- ongoing networking and support with perinatal bereavement experts via e-mail and telephone communication.
Indicators of Success
The creation of The Alliance from the collective recognition of need (Clark et al., 2006) by perinatal bereavement clinicians has led to the identification and implementation of activities that have exceeded initial members' hopes. For the past 26 years, The Alliance has successfully lived out its mission of enhancing the work of Chicago area perinatal bereavement facilitators. The resulting key indicators of The Alliance's success are summarized in Table 1 and may serve as model strategies for nurses considering similar professional alliances.
The collaborative spirit of its members, which can be traced back to the group's origin, is integral to The Alliance's longevity. The original Alliance leaders established a common goal to promote excellence in perinatal bereavement care, one that continues to be clearly articulated to new members (Krieger et al., 2006). The Alliance founders also have worked together to create organizational capacity (Foster-Fishman, Berkowitz, Lounsbury, Jacobson, & Allen, 2001) by developing group processes and bylaws to best represent The Alliance's changing needs. Throughout the process of organizational building, members voiced their belief in the importance of sharing responsibility for management of the group's workload (Gillies, 1998), further contributing to The Alliance's success through the years.
Developing pathways for effective communication among all Alliance members has been a critical factor in maintaining members' interest and involvement (Butterfoss, Lachance, & Orians, 2006). While The Alliance initially relied on regular postal mail for communication between meetings, eventually email became the preferred method of correspondence and timely resource sharing. Scheduling quarterly meetings on a set month and day, and distributing meeting agendas in advance allow for members to adequately prepare and make optimal use of group time (Butterfoss, Gilmore, et al., 2006). A portion of every Alliance meeting is devoted to members' sharing their programs' progress, achievements, and issues. In addition, members have the opportunity to engage in collective discussion and problem solving. As a result, the communication that unfolds at Alliance meetings fosters a culture of openness, creativity, and collaboration (Krieger et al., 2006).
Perhaps the most important Alliance attribute continues to be fostering opportunities for members to network and to develop trusting, supportive relationships (Krieger et al., 2006; Padget et al., 2004; Wolff, 2001). The resulting environment is one in which members connect, encourage, and support one another, thus creating a safe haven amidst the difficult work of caring for parents experiencing perinatal loss. All professionals are welcome at The Alliance activities. The range of clinical expertise and skill results in rich discussion and generation of ideas. Collaborative capacity is evident as members honor each other's talents, skills, and knowledge (Foster-Fishman et al., 2001).
As The Alliance matured and developed cohesiveness, we grew from our primary goal of sharing information and resources (Wolff, 2001) to engaging in meaningful opportunities to affect the field of perinatal bereavement care. Our work with the Illinois Department of Public Health to enhance respectful disposition legislation provides one example of how The Alliance has expanded its scope of influence. In making the commitment to foster a spirit of continual learning (Foster-Fishman et al., 2001), Alliance members incorporated educational offerings into each quarterly meeting. Likewise, Alliance members have mindfully chosen to participate in achievable group projects (Padget et al., 2004), such as collaborating with organizers of the 2006 National Perinatal Bereavement Conference, working with the National Board for Certification of Hospice and Palliative Nurses to develop a Professional Certification in Perinatal Loss Care, and writing this article. Each activity focused on disseminating knowledge and ensuring best practice.
The Alliance's goal to foster collaboration among perinatal bereavement facilitators has been challenged by the ever-changing healthcare climate. Healthcare professionals are experiencing increased workload demands amidst diminishing resources, and many bereavement facilitators have experienced program cutbacks or downsizing as a result of limited funding. Some members are finding they have very limited availability to attend meetings or contribute to Alliance work as a result of changes at their worksite. As such, The Alliance leaders are always mindful of crafting meeting agendas that honor members' priorities and time constraints (Krieger et al., 2006). For example, in advance of the meeting a form is sent to members to consider their group's updates, the challenges facing their group and a current clinical/ethical issue. This allows the members to come prepared, and ready to focus and engage in a progressive discussion at each meeting.
Sustainability of The Alliance will depend upon the recruitment of future leaders (Butterfoss, Gilmore, et al., 2006) who have the passion and willingness to continue to affect the field of perinatal bereavement care. Alliance members will need to creatively harness communication technology advances in order to sustain strong networking opportunities for healthcare professionals with limited time constraints (Wolff, 2001). The Alliance also faces the ongoing task of transforming entrenched attitudes (Padget et al., 2004) in both hospital and community settings of those who do not fully understand the needs of grieving parents. By continuing to draw upon the collective talent, wisdom, and expertise of members, The Alliance stands poised to serve grieving families and support interdisciplinary team members engaged in this work. Identifying and partnering with other perinatal bereavement champions such as the national Pregnancy Loss and Infant Death Alliance (PLIDA) will be an important strategy for The Alliance as it strives to enhance quality perinatal bereavement care.
The Alliance of Perinatal Bereavement Support Facilitators is a network that provides information and support to a variety of healthcare professionals in the Chicago area. The collaborative nature of the members, effective communication, impact on the community, and cooperative leadership provide the keys to success. A collaborative partnership like The Alliance can have a meaningful impact on improving care to bereaved parents. This Alliance has shown to be a successful, long-lasting model of collaboration that can be considered for other regions.
Clinical Implications: Fostering Collaboration to Improve Care
Nurses who want to replicate the model of The Alliance need to:
- Define the issue or identify gaps in service
- Identify key stakeholders engaged in the work
- Gather data on current best practices
- Invite core team to evaluate the scope of the issue and brainstorm action plans
- Determine focus, leadership structure and frequency of meetings
- Foster collaboration, trust and member engagement
- Establish processes that promote organizational sustainability
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