SIDS & Infant Mortality Town Hall Meeting

Toledo Children's Hospital
Toledo, Ohio
April 29, 1999

Summary: Lessons Learned

Background

The National SIDS and Infant Death Program Support Center (NSIDPSC) was created through a cooperative agreement between the Federal Bureau of Maternal and Child Health and the Sudden Infant Death Syndrome Alliance, a national, volunteer-based, non-profit organization. The NSIDPSC helps state programs and local community organizations concerned with infant mortality to improve existing services and develop new programs. The NSIDPSC has several goals which include: reducing the risk of SIDS and other infant death as much as possible, providing support to families whose babies have died, reaching out to minority and underserved populations, and studying information about infant deaths to discover ways we can reduce or prevent future deaths.

The Northwest Ohio SIDS Support Network is a non-profit group that provides an integrated, comprehensive and compassionate response to families whose infant has died suddenly and unexpectedly. The Support Network offers mutual support for anyone touched by an infant's unexpected death. The Network also promotes public awareness on the commonality of SIDS. The group contributes funding toward research that seeks to determine why these babies died and to find ways to eliminate the tragedy of such a loss. The Network also coordinates fundraising activities including: sponsored events, memorial gifts, license plates, Pampered Chef cookbooks, stationery, pins, tote bags, and T-shirts displaying their logo or the Back to Sleep logo.

The Northwest Ohio SIDS Support Network contacted the National SIDS and Infant Death Program Support Center (NSIDPSC) in November 1998, requesting assistance in conducting community outreach. Specifically, the Network was interested in developing strategies that would: (1) attract families to participate in support group meetings and (2) enable their support group meetings to serve these families' needs in a culturally competent manner. The Network received a grant from the CJ Foundation for SIDS to implement outreach to minority communities. Unfortunately, the volunteer who had been instrumental in initiating the outreach project died suddenly while the project was still in the planning phase.

NSIDPSC staff were drafting a strategic work plan. Among the objectives of the Center's Underserved Populations Work Team was the development of "strategies which seek out community residents and encourage them to participate in the formulation of risk reduction and bereavement support activities." The president of the Northwest Ohio SIDS Support Network was invited to make a presentation to the team requesting guidance in arranging a conference that would focus on the bereavement support needs of families in minority communities. The Network intended to use the conference to raise awareness of the high infant mortality rates among minority populations and to identify resources for serving families within other organizations and agencies. Members of the Underserved Populations Team recognized that partnering with the Northwest Ohio SIDS Support Network on this conference offered them the opportunity to develop a pilot program for community outreach and involvement that could be documented and replicated throughout the country.

Work team members provided the president of the Network with materials and contacts. They suggested that the conference be structured to focus on risk reduction methods, rather than on bereavement support. Risk reduction issues tend to be broader - affecting all infants and pregnant women - and can be presented in a more positive light. A conference planning committee was formed. Seated on this committee were the president of the Northwest Ohio SIDS Support Network, the Executive Director of the Sudden Infant Death Network of Ohio, a statewide volunteer-based SIDS organization, the Program Coordinator of the NSIDPSC, and two members of the Underserved Populations Team who reside in Ohio. The committee determined that the conference should be presented in an open "town hall meeting" format, utilizing a panel of professionals who deal with infant deaths or would be considered resources for minority families.

The format of the meeting was as follows:

1. Welcoming remarks and review of agenda;

2. National and state infant mortality statistics -- emphasis on experience of minority populations;

3. Panel presentations - the panel of eight included a pastor, a representative of child protective services, a funeral director, a SIDS parent, a certified nurse midwife working with minority families, the director of pediatric pulmonary medicine at Toledo Children's Hospital, an education caseworker/advocate who works with migrant families, and a researcher from St. Louis who conducted SIDS social research; and,

4. Question and answer session.

Approximately 50 people attended the town hall meeting. The audience consisted primarily of Caucasian women. Most were professionals in fields relevant to maternal and infant health. Following the meeting, participants were asked to complete the evaluation forms in which they rated various aspects of the meeting on a numerical scale. Fourteen participants (28%) completed evaluation forms. They rated meeting elements highly: on a scale of one (lowest) to five (highest), the majority of the evaluations gave elements a 4 or 5 rating.

Lessons Learned and Guidelines for Coordinating a Town Hall Meeting

Build a Foundation of Community Support Before Scheduling a Meeting

Our experience: In the case of the Toledo Town Hall Meeting, the local volunteer group (the Northwest Ohio SIDS Support Network) had initiated plans for a meeting prior to contacting the NSIDPSC. Perhaps more importantly, they had lost their project leader, and still faced time constraints imposed by the grant. These circumstances made completing the project on a timely basis a priority. The planning committee recognized that it did not have sufficient time to build relationships and obtain "buy-in" from organizations influential among the area's minority populations.

What we learned: Ideally, three to six months should be spent forming the planning committee. The town hall meeting coordinator from the local SIDS/ID group conducts introductory meetings with organizations that serve minority populations. The local SIDS/ID president or program director should also be involved in the initial meetings. Some examples of organizations that might be approached include area churches and other religious organizations; the NAACP, minority newspapers such as La Raza, service sororities and fraternities, health clinics in minority neighborhoods, Masonic groups, and minority professional associations (e.g. Association of Black Social Workers). Explore the telephone book yellow pages for listings of civic and social service organizations and professional associations. Obtain a copy of any minority "yellow pages" directories published in the area.

At the introductory level, planning and achieving representation in the town hall meeting are not priorities. Indeed, the concept of holding a town hall meeting may only be mentioned to prospective partners briefly. Introductory meetings provide the local SIDS/ID group with opportunities to:

� Offer services/resources to the community service organization and their clients;

� Ask for references to other organizations and /or influential minority leaders;

� Invite staff or board members from the organization to attend SIDS/ID meetings (e.g. board, support groups, risk reduction, etc.); and,

� Add the organization to the SIDS/ID mailing list and /or request the use of their mailing list (one caveat: the SIDS/ID group may need to emphasize or agree that only general and program activity information will be sent to members of the community organization's mailing list. Most organizations will not want their members to receive SIDS/ID donation requests and other fundraising materials).

The first introductory meetings will generate more meetings as references to other organizations and individuals are received. As the group builds its contact network, follow-up becomes essential. Each person or organization that participated in an introductory meeting should be contacted no less than once per month. Some forms of follow-up might include:

� Reporting on a meeting you had with someone to whom the contact referred you (and thanking him/her for the referral);

� Informing the contact of a new program you are initiating or reporting the progress of a project in which they took a particular interest;

� Referring a family to the organization;

� Passing along an article or press release; and,

� Seeking advice on a program or client issue.

Only after relationships with community organizations are established is the SIDS/ID group ready to begin identifying candidates for the town hall meeting planning committee.

Prospective Sponsors and Participants for Your Meeting

As you invite contacts to participate on the planning committee or invite organizations to sponsor your meeting, be aware that increasing community awareness of infant mortality issues and racial disparities may not be sufficient to motivate the candidates to invest their time in your meeting. Be prepared to convince them that their participation in the meeting will benefit them. Some methods to accomplish this include the following steps:

� Develop a presentation - and practice it before the members of your groups prior to approaching candidates. Prepare your presentation to answer the question, "What is in it for me/my organization if we sponsor/participate in your meeting?"

� Write a one-page letter describing your meeting and exactly how you would like the candidate to participate. Emphasize clearly in the letter that you want to discuss the idea with them in person or in a phone conversation.

� Define the type of sponsorship you seek up front. Be aware that most people equate sponsorship with providing money. If you are not requesting funding from your sponsors make that clear. Community organizations may not have the budget to give you funding, but can provide other resources - such as mailing lists, use of their name in publicity, speakers, or clients as audience members - which may be of greater value to your meeting.

� Provide concrete ideas on how the person/organization will benefit from participating in the meeting (e.g. "Your church will gain publicity and additional contacts for outreach corps." "Your hospital will be recognized in the African-American newspaper for supporting minority infant health issues."). Emphasize the recognition that the person/organization will receive, but be cautious about discussing benefits that are based on attracting a large audience.

� Tailor your presentation to each particular candidate. Listen to the candidates' questions and concerns. Do not be afraid to say "I will have to confer with our president/board on that issue and will get back to you." Let the candidate know when s/he might expect to hear from you.

� Share "ownership" of the meeting with sponsoring organizations. Some examples of sharing ownership include: A pastor wants his church's name to appear first on the list of sponsors; the hospital sponsor wants all media contacts referred to him; an African-American sorority wants to handle the mailings and requests your mailing list; and, a Hispanic civic group wants special audio/visual equipment to project Spanish subtitles on a screen during the meeting. Do your best to accommodate all reasonable sponsorship requests.

Keep in mind that the sponsoring organizations are likely to be better known among the target audience than the SIDS/ID group. Provided that you are working with well-respected organizations, the appearance that the sponsoring organizations are responsible for initiating and conducting the meeting may result in a larger audience. You must be prepared to allow sponsors to have some control over the meeting. Remember, it is more important to host an effective meeting than it is to have the entire community know that your SIDS/ID group came up with the idea for conducting it.

Do not allow sponsoring organizations to control factual content about SIDS and infant mortality that is presented during the meeting. The "Back to Sleep" message in particular often meets with resistance in minority communities. Your primary purpose for holding this meeting is to impart accurate, appropriate information to minority populations and to initiate resources that will help spread risk reduction messages even further (as well as help to support the bereaved families).

Follow-up with prospective participants and sponsors until you receive a definite answer. Always have a list of candidates sufficient to provide you with an alternative if your first choice says "no." Continue to conduct introductory meetings and to make presentations until you have secured enough sponsors, speakers, and assistance for your meeting.

Select a "Neutral" Location

Our experience: Toledo Children's Hospital supplied a meeting room with arena seating that accommodates 250 on a pro bono basis, all audiovisual equipment, exhibit space adjacent to the meeting room, and refreshments. They also provided coordination of meeting arrangements and media contacts through their public relations department. The Toledo town hall meeting was developed in a relatively short time frame, and the space and services offered by Toledo Children's Hospital were the best available to us.

It should be noted, however, that Toledo Hospital (of which the Children's Hospital is a part) has a reputation in the community for serving primarily Caucasian patients. The hospital is itself implementing outreach strategies to attract minority clientele. Whether the location had any effect on the relatively low percentage of minority participants in attendance, we have no way to determine.

The meeting room provided was state-of-the-art. But, because the meeting was only attended by 50 people, it appeared cavernous. Several evaluations contained written comments that a more "intimate" setting would have been more appropriate. However, in rating whether the facilities were conducive to the proceedings, the majority of the evaluations (9) gave the facilities the highest mark of 5. Four more evaluations scored the facilities as a 4.

What we learned: In planning a meeting that attempts to bring together people of diverse backgrounds, the location can be a delicate issue. Obviously, clubs or institutions that were historically exclusive should not be considered (even if they are no longer exclusive), nor should any facilities that have reputations for discrimination of or poor service to minorities. While it may not be possible, or preferential, to involve the entire planning committee and sponsors in selecting a meeting site, be sure to consult them about your top three choices so that they may identify any that would be considered unacceptable to members of their community.

The neighborhood in which your meeting facility is located may also present problems. Is it difficult to reach by public transportation? Is it considered dangerous by some groups? A wonderful facility is useless if potential participants cannot or will not travel to it for your meeting. Again, consult with your planning committee and sponsors on these considerations.

Some options for "neutral" locations include:

� Downtown hotels (be aware that those which cater to a high-income clientele may intimidate some
potential participants.);

� Hospitals and large health clinics;

� State or city government conference rooms (e.g. health or human services departments);

� Meeting rooms of your board members' and volunteers' companies; and,

� The local Chamber of Commerce may be able to direct you to companies or groups which rent meeting facilities.

The planning committee should allow sufficient lead time to investigate several different location options.

Use Alternative Publicity Sources to Spread the Word

Our experience: The planning committee utilized personal and professional contacts, as well as the Toledo Black Yellow Pages to develop an invitation mailing list of 500 people/organizations. Invitation letters included a response post card, however, only 30 post cards were returned. Personalized letters and follow-up calls were made to city and state government officials. Both the Mayor of Toledo and the Governor sent high-ranking health department officials to the meeting as their representatives.

A half-page advertisement in the Toledo Journal, the area's African-American newspaper was purchased. The Journal also wrote a two-page story on infant mortality issues among African-Americans which highlighted the meeting. The meeting was videotaped and aired by "Step-Up, Toledo!" a local public affairs television program that focuses on a variety of issues of concern to the African-American community.

We fell distinctly short in the area of publicity by not making contact with or utilizing resources in the Hispanic community.

What we learned: While "mainstream" media resources, such as major newspapers and TV/radio public service announcements, should not be neglected, alternative media resources may represent the best method of attracting participants from minority communities. Find out if your local Chamber of Commerce has a listing of media resources available and if so, purchase it. If your group can afford to do so, purchase advertisements in minority newspapers while simultaneously pursuing publication of an article on the topic. Often newspapers are more likely to generate an article once you have purchased an ad.

Some other publicity resources you may want to consult or contact include:

� Black or Hispanic "Yellow Pages," usually published by minority newspapers or the local business journal;

� Church bulletins or outreach newsletters;

� Community College bulletin boards and/or child care centers;

� Health clinics, doctor's offices, education/literacy programs, and child care centers (give them meeting flyers);

� Community newspapers - for both the area in which your meeting will be located and other surrounding communities;

� Newsletter of civic organizations (whether or not they are your sponsors) - use contacts made at introductory meetings; and,

� Community calendars and/or talk shows on jazz, Latin, and/or gospel radio stations.

Remember too, to request use of your sponsoring organizations' mailing list for invitation letters. Offer to create a sample letter if the sponsor wants the invitation prepared on their letterhead and with their signature. Be sure to include an RSVP telephone number in all invitations. A response card is also helpful, but be aware that your response card return rate is not a reliable indicator of the number of people who will attend the meeting. Wherever possible, ask sponsors to bring clients or members to the meeting.

Develop and Utilize Contacts from Outside the Local Area

Our experience: Working with the Underserved Populations work team of the NSIDPSC afforded the Northwest Ohio SIDS Support Network the opportunity to make contact with SIDS/ID professionals from throughout the country. Team members from California, Florida, Georgia, Iowa, Missouri, Pennsylvania, South Dakota, and Washington, D.C. offered suggestions based on successful programs they had conducted. The Network president received a manual for outreach workers in rural areas from SIDS Resources, Inc. of Missouri. He also visited the Pennsylvania SIDS Center Philadelphia office and attended the SIDS Alliance national conference in Atlanta, Georgia.

The panel at the Toledo meeting included a researcher from St. Louis University in Missouri who had conducted a study of how senior caregivers (i.e. grandmothers, great-grandmothers, aunts, etc.) influence young African-American mothers relevant to SIDS risk reduction methods. The researcher was well-received by the audience and asked a number of questions.

What we learned: Information from programs in other areas of the country can only enhance knowledge, ideas, and concepts related to serving minority families. The president of the Northwest SIDS Support Network received contact materials, suggestions, and offers of assistance that not only expanded the Network's concept of the town hall meeting, but also ideas on how to provide services to families who are unlikely to utilize support groups. Our experience was that SIDS/ID groups are eager to share information and help each other. Sponsoring organizations should be encouraged to contact their counterparts in other areas for information on minority health awareness projects. While these projects may focus on different health issues (e.g. organ transplants, diabetes, blood pressure), elements of their format may be adaptable to infant mortality projects.

Including an expert from another area can be also be beneficial to the meeting. Audience members are interested in how other communities handle problems similar to their own. Selecting an appropriate visiting panel member is important. Be sure to find someone who offers new information, a fresh viewpoint, or is involved with an innovative program. A visiting panel member who offers essentially the same information as someone from the local area (e.g. funeral director or nurse) is simply repetitive.

Follow-up with Contacts Gained at the Meeting; Prepare An Ad-Hoc Committee

Our experience: At the time the Toledo town hall meeting was held, the Northwest Ohio SIDS Support Network was in the process of inducting a new president. Arrangements for the town hall meeting were conducted by the outgoing president and the incoming president was kept up-to-date on the meeting progress and attended as a participant. Shortly after the meeting, the mayor's office announced a major minority infant health awareness initiative, chaired by the director of the area's largest minority health clinic. The outgoing president attempted to make contact with the director of the initiative. However organized follow-up has not been accomplished two months after the meeting. This is due, in part, to the Network's transition in leadership and general lack of available manpower. The Northwest Ohio SIDS Support Network is a small grassroots Affiliate. The NSIDPSC will assist them in conducting follow-up and will mobilize their statewide SIDS Network of Ohio to help as well.

What we learned: If your SIDS/ID group does not have sufficient membership to complete follow-up and to develop and maintain an ad hoc committee, your group is not ready to conduct a town hall meeting. Similarly, you should not attempt to conduct a meeting if your group is in the midst of a transition (e.g. hiring an executive director, changing officers, etc.). This is not to say you should stop planning a meeting. Continue to conduct introductory meetings with community resources and invite them to become involved with your group. Contacts gained at introductory meetings can help build your membership and can better position you to hold a town hall meeting in the future.

Remember, the town hall meeting is not an end in and of itself. The reason for conducting the meeting is to initiate actions that will lead to improved services to minority families and, ultimately reduced infant mortality rates among minorities. If your group fails to conduct adequate follow-up and subsequent action, then in the long run, your town hall meeting will have accomplished nothing.

Prior to conducting the meeting, the SIDS/ID group and meeting sponsors should draft a follow-up plan with target dates. Within two weeks after the meeting, this same group should debrief and determine the next steps. While it is preferable to meet as a group to debrief, keep in mind that it may not be possible so soon after the meeting. It is important that your debriefing be timely, so be flexible. Debriefing may be accomplished as a series of phone calls between SIDS/ID meeting coordinator and individual sponsors. Regardless of the format, debriefing should be documented and distributed to all participants. Some questions that may be discussed in determining a follow-up plan may include:

� Did any clear action items emerge during the meeting?

� Were any invitations extended for SIDS/ID groups or sponsors to speak with other groups in attendance?

� Were contacts with the local or state health departments made or strengthened? and,

� Have any participants contacted your organization since the meeting?

Follow-up is the responsibility of the local SIDS/ID group (and ideally, of their sponsors, too). The NSIDPSC and statewide SIDS personnel should be kept informed of the follow-up efforts and consulted for assistance if issues arise. However, national and statewide groups should not be the driving force in the conduct of follow-up, as they will not be the ones to implement subsequent steps.

Develop a list of contacts made who would be appropriate to participate on an ad hoc committee to address minority outreach. Send them a letter of invitation for the committee and follow-up with a telephone call to gain their commitment and determine dates that they would be available to attend an initial committee meeting. While it is important to include community leaders, organization directors, political officials, and health professionals on the ad hoc committee, be careful not to discount interested minority parents as members. Although parents may not bring resources to the table, they are often invaluable in providing the committee with a family perspective from the target population.

As an ad hoc committee takes shape and begins to develop an outreach plan, be prepared to again share ownership of the activities. New leaders who may have no previous involvement in (or even awareness of) SIDS/ID issues will emerge. Keep in mind that ad hoc committee members have an understanding of - and years of service experience with - minority families and underserved populations. The job of your SIDS/ID group is to be sure that committee members impart correct factual information about infant mortality issues. Be prepared to follow their lead in developing outreach programs.

Keep an Appropriate Perspective

A town hall meeting does not take shape overnight. Nor does it necessarily have a major impact on the community within one year. It simply represents a beginning, and the major work goes on for years afterwards. At its best, the town hall meeting serves as a wake-up call for parents, organizations, and professionals about racial disparities in infant mortality rates and shortcomings in the systems that provide support services to minority families. A meeting attended by 200 people is not helpful if it does not generate subsequent meetings and actions. The opposite is also true. A meeting attended by only 50 people is not a failure if 20 attendees go on to build and sustain outreach networks in minority communities.

We will continue to monitor outreach efforts in Toledo throughout the next year. We will also replicate the town hall meeting project in other areas of the country and will report on the success of those projects and their subsequent efforts.

This report was created by the Underserved Populations Work Team of the National SIDS and Infant Death Program Support Center (NSIDPSC).  You may copy or adapt it as long as you properly credit the source.  To obtain multiple copies of this piece or other materials, please contact us at (7437) or visit our website at www.sids-id-psc.org.  The NSIDSPSC is a cooperative project of the SIDS Alliance, Inc. and the Health Resources and Services Administration�s (HRSA) Maternal and Child Health Bureau  (MCHB) Sudden Infant Death Syndrome/Infant Death Program.