Carl Ellison, Vice President of Community Affairs at Memorial Hospital, an African-American community leader and WIT program advocate, believes that "the WIT program is not a 'recipe' type of program, it has evolved slowly through a process of forming, storming and norming."⁽⁶⁾ Throughout the "storming" stage of the Women In Touch program several issues came to the attention of program personnel and volunteers. Some of these issues were relative to the organizational structure and operations of the program itself. The remaining issues center around the target population and their access to and participation in the program.

The organizational issues that confronted the program leadership and WIT volunteers were, and some continue to be, resolvable. Some were perhaps even avoidable. From the start WIT volunteers were driven by their sense of ownership of the program, this is one of the major reasons for its success, it caused WIT leadership to go forward in what has been described previously as a "snow-ball" effect. The problems that later arose centered around "ownership" issues. Since there was no agreement between hospital leadership and leadership/volunteers as to the processes, procedures and roles each would be playing in the development of the Women In Touch program, there was no clear road map to follow. Looking back, both administrators and volunteers have agreed that this lack of formal structure caused some avoidable problems.

The "power struggle" that ensued as a result of unclear and undefined roles also revolved around some racial concerns. Since the WIT program was committed to serving the African-American population exclusively, in order to build trust and relationships in the African-American community, leaders believed that the program must be solely created by and for African-American women. This again is one of the strengths of the program and attributes to the overwhelming success, but within the organizational process it created chasms between white hospital administrators and African-American program leadership and volunteers.

WIT leaders and volunteers were also concerned about the hospital's "agenda." Could they trust that the hospital was an ally and would they provide all that was promised? Indeed the hospital had its own motives for initiating the first meetings, it was concerned about the alarming incidence and death rates among African-American women, but it also hoped to get African American women to participate in the Breast Cancer Prevention Trial. The BCPT led the leadership to reveal fears of "being used" and brought up concerns about the WIT effort being for hospital gain. Both hospital administrators and program leaders agreed to eliminate the BCPT from the programmatic goals.

Other organizational issues centered around the fact that the WIT program was solely volunteer based. Many of the leaders pushed for paid staff positions early in the program's development. This may have alleviated some of the "trust" issues and helped the hospital gain a strong partnership base early on. There were also some internal issues among the African-American women involved in the development of the Women In Touch program. During its formative stages, WIT volunteers were uncertain about the organization's own internal make up. Some thought that the organization was made up solely of medical "professionals" and was limiting ownership. Others believed that the organization was to be "social" and should not be too formally structured. Through a long process of "storming"⁽⁷⁾ the WIT volunteers included African-American women with professional and non-professional backgrounds. The diversity of this group is another reason for its success and a credit to the organization.

The organizational issues that arose were not unresolvable and were, in fact, avoidable. The partnership that has developed through the "storming"⁽⁸⁾ stage, between hospital administrators and program leadership and volunteers, as a result of these concerns, is exemplary. We recommend that others forming similar programs develop clear and well defined roles for all involved from the onset.

As a guide to process development we have included a organizational chart in the back of this Action Kit. Many of the issues and concerns outlined here can be addressed if your organization follows the guidelines listed on the organizational chart. These are only suggestions that have surfaced as a result of the lessons we have learned throughout the "storming"⁽⁹⁾ process.

In addition to "organizational" issues we have been confronted with issues that center around the target population, those who receive services through the Women In Touch program. Fortunately, with a strong partnership and collaborative effort, WIT leaders and volunteers have been successful at addressing these issues.

Some of the barriers and stigmas listed below have been described as "cultural" in nature. By no means do we assume that these are truths for all African-Americans. It has been our experience working with this specific target population of African-American women that enabled us to record these observations.

Many of the women who come through the WIT program do so as a result of the information and support they are given by WIT volunteers and staff. These women may also have other strong support systems - family, finances, education, etc., ... - that allow them to be able to do this. Unfortunately, not all African-American women have these support mechanisms. What WIT volunteers have found out about the ones who are reluctant to participate or just don't, is that they almost always have barriers, stigmas and fears that make it difficult, if not impossible, for them to participate in the program.

The "stigma" of cancer for some African-American women can be great. Some women don't even want to know if they have cancer. Many do not perform Breast Self Examinations or obtain regular mammograms because they are afraid they will be diagnosed with breast cancer. They believe that if they get cancer they will die. According to Bettye Green, WIT Chairperson and breast cancer survivor, "There are many different myths associated with breast cancer. I've noticed that some women believe that they are being punished for something, that somehow they deserve this cancer. Sometimes these issues can center around a person's religious beliefs." This myth can cause women to keep quiet about their cancer experience. They don't want their "business" in the street. Another common misperception is that cancer is something you can catch. Bettye and WIT staff and volunteers work hard to address the myths of breast cancer and to help alleviate women's fears.

The fears of cancer, cancer treatment and the bigger issues of life and death, are always present. WIT staff continually deal with women who believe, according to Bettye Green, "that they are going to die." They may think that therapy will be a waste of time, may cause a lot of pain and concerns of privacy and dignity which keep them from seeking medical assistance and treatment. There are also the obvious, and more talked about issues of sexuality and womanhood. Some women are scared to loose their breasts because somehow they will be losing their sense of "womanhood."

Another issue specific to our community, is a lack of African-American physicians, medical personnel, and technicians. A way to alleviate fears and put people at ease is for them to feel comfortable with physicians and others who they encounter along the way; this includes the "gatekeepers," those people who answer the phones, make appointments and forward personal and critical information to patients. WIT staff and volunteers help women through the various stages of screening, diagnosis, treatment and recovery by serving as support for the patient when dealing with these "gatekeepers." A familiar face and a personal advocate makes this journey less scary.

In addition to the stigmas and fears, there are "barriers" that keep women from seeking assistance through WIT. Many women are not insured or under-insured; some do not even have a physician. Some have transportation, child care and other financial concerns that they consider more pressing to them than their own health. Margaret McKinney-Arnold, WIT Coordinator, has noticed that "some women just don't have the time to come in for a mammogram, they have more immediate concerns, like work and family responsibilities. This can keep them from caring for their own personal health." Margaret explained that "African-American women have three weapons against breast cancer: monthly Breast Self Examination, annual clinical exams and mammograms." The WIT Coordinator believes it is critical to the success of the program that women be encouraged to use these weapons.

There are some very personal issues surrounding breast cancer and African American women. Breast Self Examination is one. Bettye Green mentioned that "some women believe that this is masturbation and were taught not to do this by parents and church leaders." In order to help African-American women feel comfortable performing BSE, WIT uses educational tools and models that resemble African-American women.

In order for WIT leaders, staff and volunteers to move forward into the "norming"⁽¹⁰⁾ stage of development most, if not all, of these programmatic and cultural issues needed to be resolved or addressed in some way. It has been through the process of addressing these issues that the overwhelming success of the program became evident.