BEREAVEMENT COMBINING REGIONAL EXPERTISE TO FORM A
SUPPORT ALLIANCE
Judy B. Friedrichs, MS, RN, FT, CPLC, Kathie Kobler, MS, APN, PCNS-BC, CHPPN, Rosmarie E. Roose, MSN, RNC, Charlotte Meyer, MS, RN, Nancy Schmitz, RN, CPLC, and Karen Kavanaugh, PhD, RN, FAAN
198
Abstract Providing compassionate bereavement care for families experiencing perinatal loss is a standard of care in most healthcare organizations. In this article, we describe the development of The Alliance of Perinatal Bereavement Support Facilitators, begun over 25 years ago in Chicago by staff who identified the need to reach out to colleagues at other area institutions for advice and support in this work. This collaboration created a regional support network that has resulted in a long-lasting, active, sustainable organization of excellence focused on enhancing practice, education, and perinatal bereavement care. Alliance activities center around four main areas: education, networking/support, policy, and recognizing outstanding service to families. By continuing to draw upon the collective talent, wisdom, and expertise of its members, The Alliance still serves grieving families and provides mentoring for future interdisciplinary team members engaged in this work. The path taken to build this organization can be used by professionals in other specialties who are looking to create their own alliance infrastructure based on mutual benefit and interest. Key Words: Alliance; Bereavement; Coalition development; Education; Networking; Perinatal; Support.
volume 39 | number 3
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
May/June 2014
C
ompassionate 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-toface 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, MCN
May/June 2014
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
199
Gilmore, et al., 2006; Rosenthal et al., 2006). Within the fi rst 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 200
volume 39 |
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: • Education • Networking/support • Policy • Recognizing outstanding service to families Education
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).
number 3
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
May/June 2014
“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.”
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. Networking/Support
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. Policy
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 (
SUPPORT ALLIANCE
Judy B. Friedrichs, MS, RN, FT, CPLC, Kathie Kobler, MS, APN, PCNS-BC, CHPPN, Rosmarie E. Roose, MSN, RNC, Charlotte Meyer, MS, RN, Nancy Schmitz, RN, CPLC, and Karen Kavanaugh, PhD, RN, FAAN
198
Abstract Providing compassionate bereavement care for families experiencing perinatal loss is a standard of care in most healthcare organizations. In this article, we describe the development of The Alliance of Perinatal Bereavement Support Facilitators, begun over 25 years ago in Chicago by staff who identified the need to reach out to colleagues at other area institutions for advice and support in this work. This collaboration created a regional support network that has resulted in a long-lasting, active, sustainable organization of excellence focused on enhancing practice, education, and perinatal bereavement care. Alliance activities center around four main areas: education, networking/support, policy, and recognizing outstanding service to families. By continuing to draw upon the collective talent, wisdom, and expertise of its members, The Alliance still serves grieving families and provides mentoring for future interdisciplinary team members engaged in this work. The path taken to build this organization can be used by professionals in other specialties who are looking to create their own alliance infrastructure based on mutual benefit and interest. Key Words: Alliance; Bereavement; Coalition development; Education; Networking; Perinatal; Support.
volume 39 | number 3
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
May/June 2014
C
ompassionate 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-toface 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, MCN
May/June 2014
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
199
Gilmore, et al., 2006; Rosenthal et al., 2006). Within the fi rst 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 200
volume 39 |
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: • Education • Networking/support • Policy • Recognizing outstanding service to families Education
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).
number 3
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
May/June 2014
“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.”
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. Networking/Support
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. Policy
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 (
