Minority Guide
A note to users of this page:
NCCS created this Guide to Minority Cancer Survivorship Program in 1997. While much of the discussion on how to develop and sustain minority cancer survivorship programs is still relevant today, some of the contact information for organizations listed in this guide may be outdated. NCCS is in the process of updating this document. However, we have left the current document posted so that you can still take advantage of the information on this important topic
NCCS frequently works in collaboration with other organizations. On several resources designed to address the special needs of minority, medically underserved, poor and rural communities, we’ve done just that. Please take a look.
Minority Cancer Survivorship Programs: How To Develop and Sustain Them
NCCS teamed up with the National Cancer Institute’s Cancer Information Service on a grant to identify model survivorship programs reaching out to minority and underserved communities. That collaboration led to the online resource Minority Cancer Survivorship Programs: How To Develop and Sustain Them.The Cancer Survival Toolbox®
NCCS worked with the Oncology Nursing Society and Association for Oncology Social Work to develop this outstanding audio presentation designed to help those dealing with a cancer diagnosis. The Toolbox is available in several languages, including: Chinese, English and Spanish.Events
Several conferences and events focus on issues related to minority and medically underserved communities. Click here to see upcoming events.
Minority Cancer Survivorship Programs: How To Develop and Sustain Them
The Four Model Programs
Survivor Support Makes a Difference
It All Begins with an Idea
Look Before You Leap
Develop Endurance
Establish Reliable Funding Sources Early
Learn About Local and State Policies
Establish and Promote Your Identity. It's an Ongoing Process!
Know Your Local Media. Determine which channels your audience prefers.
Making Follow-Up Consistent and Timely
Lean on Others: Establish Collaborative Reciprocal Partnerships
Develop a Strategic Plan — After a Little Experience
Resources
Minority Cancer Survivorship Programs:
How To Develop and Sustain Them
Model Programs
- Celebration of Living
- People Living Through Cancer
- Sisters Network, Inc.
- Women Achieving Victory and Esteem
A collaborative project of the National Coalition for Cancer Survivorship and the National Cancer Institute's Cancer Information Service.
Supported by an educational grant from Bristol-Myers Squibb Oncology.
The community of cancer survivors is growing — about 8 million people in the United States are alive today who have been diagnosed with cancer. With the good news that more people are surviving cancer comes the reality that survivors face many challenges. Adapting to the physical, psychological, and social challenges that cancer brings and managing the financial and employment issues that may arise can be at least as demanding as facing the shock of diagnosis and the rigors of treatment.
As the special needs of cancer survivors gain attention, it becomes clear that minority populations within the survivor community have needs that require special attention. Diverse cultural values, a strong emphasis on spirituality, and the need to be able to talk freely among people with similar backgrounds and experiences are just some of the issues that indicate the need for peer support within the minority community.
The content of this guide is based on the experiences and insights of four innovative programs for survivors of cancer from varied racial, ethnic, and socioeconomic backgrounds. The leaders of these programs are people who took the time to start a survivorship program from scratch and through sheer determination, achieved their goals. They want to share what they've learned over the years about organizing programs, working with cancer survivors, finding financial support, and pulling together the right people to get the job done.
If you're reading this guide, you have probably already started a survivorship program or you may be thinking about doing so. You've taken on an important task that may seem overwhelming at times. This guide was developed to make your job a little easier. It contains profiles of four successful programs and tips for getting started and maintaining your momentum. The guide also shares time-saving detours as well as cautions about pitfalls you can avoid. At the end is a resource list for more information and services.
Because everyone's program is unique, you might not need all of the information in this guide. We hope you can take what we've provided and adapt it to meet your needs. With your commitment and the valuable experiences of the four programs presented here, we can help minority cancer survivors navigate the system, understand their disease and how to live healthfully, and get the emotional and spiritual support that is so important during these challenging times.
This guide was developed with an educational grant from Bristol-Myers Squibb Oncology.
In 1996, the National Coalition of Cancer Survivorship (NCCS) proposed a partnership to the National Cancer Institute's Cancer Information Service (CIS) and Bristol-Myers Squibb Oncology. The goal of the partnership was to reach survivors in minority populations through a Model Survivorship Outreach Program. Four outstanding cancer survivorship groups reaching out to minorities and the medically underserved were awarded grants by Bristol-Myers Squibb Oncology to strengthen their programs and to develop a program model that could be adapted for use by other minority cancer survivorship groups.
The NCCS and CIS provided technical support to four programs on the development of this guide.
The National Coalition for Cancer Survivorship (NCCS) is a grassroots network working on behalf of people with all types of cancer. NCCS's mission is to lead and strengthen the survivorship movement, empower cancer survivors, and advocate for policy issues that affect cancer survivors' quality of life. NCCS provides information on employment and insurance issues, referrals to sources of information and support, publications on survivorship issues, and is the voice of survivorship before Congress and federal agencies.
The Cancer Information Service (CIS), a national information and education network, is a free public service of the National Cancer Institute, the Nation's primary agency for cancer research. This award-winning program is the source for the latest, most accurate cancer information for cancer patients, their families, the public, and health professionals. The CIS also serves as a resource for education and outreach to minority audiences and people with limited access to health care information or services.
The programs that formed the basis for this guide each offer a different approach to reaching out to cancer survivors in minority and underserved populations:
- Celebration of Living in Eutaw, Alabama, works through black churches to combine spiritual healing with peer-to-peer support;
- People Living Through Cancer (PLTC) of Albuquerque, New Mexico, offers over 15 different programs. It originally began by serving primarily the non-minority population of Albuquerque. It has since expanded its services with outreach to African-Americans, American-Indians, and Hispanics throughout New Mexico;
- Sisters Network, Inc., with its national headquarters in Houston, Texas, demonstrates the merits of setting up "survivor-run" chapters that are organized by African-American breast cancer survivors;
- Women Achieving Victory and Esteem, or WAVE, is based at a cancer institute in Detroit, Michigan, and is able to benefit from the institute's resources and credibility.
Celebration of Living is an outreach program for African-American cancer survivors that provides spiritual, psychological, physical, and occupational support to enhance overall quality of life. Five black churches in Tuscaloosa County, Alabama, participate in the program, which began in 1996. Joseph W. Davis, director of the project, is the president and chief executive officer of the National Black Church Family Council, which is a nonprofit agency that has provided training and technical assistance to more than 100 small to medium size churches in rural Alabama counties to provide health-related services to their underserved populations. Rev. Davis helps pastors learn how to be church counselors for cancer survivorship.
The church is the strongest support system for rural African-American citizens living in the South. Because all components of life revolve around the church, families have many opportunities for prayer, fellowship, and social activities. Celebration of Living was founded to enhance and utilize social support within the church to enable cancer survivors to better cope with the challenges associated with facing and overcoming their life-threatening disease. African-American cancer survivors are provided many opportunities to "celebrate living" with others, giving hope to people who share similar fears and uncertainties. African-American cancer survivors are also given the opportunity to volunteer within their communities, which indirectly improves the quality of life for their neighborhoods.
One of our biggest goals is to plant a seed of hope and open a door of faith in order to create a new atmosphere for living. — Rev. Joseph Davis Celebration of Living.
People Living Through Cancer (PLTC)
People Living Through Cancer was founded in 1983 by and for people dealing with cancer in their lives. Peer support is the foundation of all PLTC programs. The organization's five founding board members were cancer survivors, who, with no paid staff and no funding, created comprehensive peer support and education programs. From this grassroots beginning, the organization has grown to serve thousands of New Mexicans each year with five full-time staff members and a substantial budget.
In 1991, People Living Through Cancer made a commitment to reach the populations that reflect New Mexico and its diverse cultures. Board members were recruited from Hispanic, American-Indian, and African-American communities to help with program development and outreach to these communities.
That same year, Mary P. Lovato, a cancer survivor at Santo Domingo Pueblo, asked People Living Through Cancer to adopt and fund her support groups for American-Indians, the first in the country. In Ms. Lovato's program, support groups are conducted in the language of the tribe and ceremony is an integral part of each session. Using her program as a model and with Ms. Lovato's help, People Living Through Cancer secured additional support to conduct national training programs for American-Indian survivors. Participants were equipped to return to their own communities and initiate support programs based on the model of Lovato's program. Because the programs are developed by American-Indians who adapt the model to the needs of their own communities, cultural relevance and sensitivity are assured.
PLTC address survivorship issues for minority and underserved populations n the same way they address those for all survivors: through peer support — accessing the expertise of those who have "been there." — Catherine Logan-Carrillo, Founder of People Living Through Cancer
Sisters Network, Inc.
Sisters Network, Inc., the first national African-American breast cancer organization, was established in 1994 by several African-American breast cancer survivors. In just 3 years, the network has expanded to 18 chapters nationwide, all "committed to increasing local and national attention to the devastating impact that breast cancer has in the African-American community." Karen E. Jackson is the founder and national president of the organization. The Sisters Network, to date, has not obtained funding for staff or programs. Members volunteer their time and expertise to respond to the needs of African-American breast cancer survivors.
Sisters Network provides emotional and psychological support; in-home sister-to-sister support; participation in community awareness programs; a speakers bureau; and distributes a national newsletter that links Sisters Network, Inc. with African-American communities and medical and government health agencies.
We actively involve members, family, and friends in our workshops and events. The members have established a close bond that we believe has a great impact on the level of commitment of our members. This commitment has enabled us to bolster confidence and instill hope in the many women reached by our programs and services. — Karen E. Jackson, Founder and national president of Sisters Network, Inc.
Women Achieving Victory and Esteem (WAVE)
WAVE, a cancer support group for African-American women, was established by the Karmanos Cancer Institute to increase support group participation among Southeastern Michigan's African-American population. The purpose of the group is to provide support and patient education to women of color diagnosed with cancer in an accessible, culturally sensitive environment. In 1994, the first meeting of WAVE was held, with 17 members in attendance. Since that time, membership has grown substantially. The program has offered support to more than 200 Detroit-area African-American women.
WAVE has not only provided support and empowerment, but it offers a wealth of opportunities for members to share their experience, knowledge, and skills. Women in the group focus on "the business of living," and are proud examples of how rich and rewarding life can be after a cancer diagnosis. WAVE is facilitated by Denise Ballard, the outreach program manager of the National Cancer Institute-supported Cancer Information Service of Indiana and Michigan, and Sharon Cure, who is director of patient and family services at the Karmanos Cancer Institute. Ms. Cure has provided training and ongoing assistance for the group facilitators and written guidelines for program establishment.
The group is facilitated by trained health professionals. Other staff from the cancer center and representatives from community organizations and businesses participate in the group meetings to educate members about various aspects of cancer and available community resources. The majority of presentations are offered by African-Americans, who understand not only the physical, emotional, and financial concerns faced by the members, but who can identify with the social and cultural beliefs shared by African-American women.
WAVE is a place where you can give and you can get back. — Sharon Cure, WAVE
Survivor Support Makes a Difference
Support groups offer people facing cancer many things: The ability to meet others in similar circumstances, to share methods of coping, and develop new relationships at a time of isolation. Groups have also been shown to improve adjustment, mood, coping, and quality of life for people dealing with cancer. Other advantages of the group setting include an exchange of information about cancer and its treatment; mutual problem solving especially in dealing with the health care system; encouragement; a sense of belonging, and socialization. — Excerpted from "How to Start a Cancer Support Group," a fact sheet from Cancer Care, Inc. (see Resources). Excerpted from "How to Start a Cancer Support Group," a fact sheet from Cancer Care, Inc. (see Resources).
Effective coping skills can contribute a great deal to a person's quality of life. They can also have a measurable effect on how well a person does after treatment. A study published in 1989 by Dr. David Spiegel at Stanford University showed that women with late-stage breast cancer who participated in a support group lived twice as long as similar patients who did not participate in support activities.
Once you go, you won't feel alone anymore. You know you have a place you can do and talk about anything and someone will understand. — Vivian Crestwell, Breast cancer survivor
All four of the program leaders who contributed to this guide knew they wanted to provide some type of support to their peers who have been diagnosed with cancer.
"Initially, I just wanted to do something," says Celebration of Living's Rev. Davis. He saw that most cancer survivorship groups are psychosocial groups, not spiritual groups. "The spiritual end was missing," he adds. He wanted to provide survivors with the opportunity to come together and pray with one another.
Catherine Logan-Carrillo, whose People Living Through Cancer is a well-established, 15-year old survivorship program, was approached by a survivor who had started a program for American-Indians in New Mexico's Santo Domingo Pueblo. Mary P. Lovato had established a program with other survivors in the pueblo who know their issues. "Nobody from the outside could've gone in there and started a program," Catherine insists. People Living Through Cancer provided funding, training, and accounting support. Ms. Lovato joined the PLTC staff and served as PLTC's director of Pueblo Programs for 5 years. Supporting Mary Lovato's goals fits in with PLTC's approach: "We help people make their own decisions and go wherever is best for them, based on their experiences," explains Catherine Logan-Carrillo. In 1997, the Pueblo Program became independent, reflecting the movement toward self-determination in American-Indian communities.
Once you've got an idea, it's time to do your homework. Look at your idea and find out what already exists. Determine if the community welcomes the idea, if there is a need for it, and what the critical components should be. This is all part of what is called a "needs assessment."
Find Out If There Are Existing Survivorship Groups in Your Area
Karen Jackson contacted support groups throughout the Houston area, visited several sessions of each group, and talked with facilitators and members. She saw how those groups were conducted and participated long enough to see if her personal needs could be met. She talked with relevant organizations, like the American Cancer Society and the Cancer Information Service, to learn what resources were available (see Resources). She found that in Houston, as in many cities, there was no support group specifically linking African-American breast cancer survivors.
Collaborate with other groups in the area to eliminate duplication of efforts and competition. In almost every community of any size there are often a number of cancer survivor programs. Make a strong effort to work with them. Even if you start a separate group, the peer support you could exchange with leaders of other support groups can be invaluable.
People Living Through Cancer didn't do a traditional needs assessment because the founding members were cancer survivors and had a clear idea of what their needs were. "The people affected by cancer were making the decisions. The planning work was being done by survivors, so all our meetings served as focus groups," says Catherine Logan-Carrillo.
WAVE's needs assessment was more formal. After recognizing that very few African-American women participated in the Karmanos Institute's existing support groups, Denise Ballard pulled together a group of African-American survivors she had met during her outreach activities. This group formed a task force together with experts in patient education, social work, and nursing to discuss key issues during a 2-month period. These discussions yielded several distinctive needs and concerns faced by African-American women that were not being addressed in groups in which African-American women were the minority. These needs included:
- Increased visibility of "role models," long-term survivors who could inspire and encourage newly diagnosed patients and aid in dispelling the common belief that cancer is an automatic death sentence.
- Recognition and respect for survivors' spiritual needs and practices as an integral component of the recovery process. Patients expressed a need to get closer to God in order to better cope with their disease.
- Cancer education programs offered by African-American health professionals.
Educational programs to assist the cancer survivor in coping with financial difficulties resulting from treatment and in "navigating" complex health insurance systems.
Links to community resources for culturally specific services and prosthetic devices (e.g., wigs, prostheses, make-up tips for African-American women).
- Recognition of unique needs of survivors coping with cancer as single parents.
Accessible locations for meetings, specifically within the inner city and accessible by public transportation.
- The need to cope with the belief that African-Americans may not receive the same quality of health care as non-minorities.
- Other needs included the ability to eliminate the stigma associated with a cancer diagnosis, conquer feelings of isolation and irrational fear of the disease, and to overcome the belief that a cancer diagnosis should not be shared with friends, family, or co-workers.
- Based on these findings, the task force unanimously agreed that the most effective way to address these needs would be to form a support group specifically for African-American women.
Identify why and how you wish to start a support program
Questions to explore:
- Who is your audience?
- Does your audience have needs not being met by existing groups?
- With training and assistance, can an existing group meet your audience's needs?
If you see the need to start a new group, ask:
- Are there enough people in your area who will be supportive of your efforts?
- How much time can you commit to getting the group started?
- How will you market the group?
- What funding support will you need?
- What organizations would you like to partner with? What do you need from them? (e.g., information, materials, funding, marketing assistance)
- How strong is your desire to make this happen?
Learn About Cancer
"You have to be willing to obtain knowledge for yourself so you can become knowledgeable enough to start something and be resourceful," Karen Jackson says. The combination of her personal experience and her knowledge of the disease was critical. As she learned all she could, she found out what interested her fellow survivors. "We saw that there wasn't enough scientific information about why we're getting cancer, why it is more aggressive in African-American women. Not enough focus is placed on the effects cancer has on women as whole beings."
Cancer is a group of more than 100 different diseases. Researchers are learning more about cancer each day as they look into the genetics of cancer, test new treatments, and investigate the long-term effects of cancer and its treatments. There are as many myths about cancer as there are facts. Your members may look to you for the answers, so be prepared and know how to access credible, up-to-date information. The resource list contains a number of useful sources.
Frankly, starting a program is not easy. None of these programs would be successful without the dedication and sheer determination of the people involved.
Rev. Davis likens his success to the perseverance witnessed in a running river. When the river's waters encounter an obstruction, they flow around it and find another route. In the end, no matter how many barriers it has to sidestep, the water always reaches its destination — the ocean. "You won't have time to fight everyone who doesn't believe in your idea or sees reasons why it won't work. Avoid the battles; back off and find another path. Don't quit just because you hear 'no'."
"Out of 100 pastors, I might have 10 willing to work with me. I won't waste time trying to persuade the 90 who aren't interested," Davis asserts. "With those 10 committed pastors, great things can be accomplished."
Karen Jackson calls it "stamina." Make up your mind to continue making something happen, regardless of obstacles. Having the self-confidence to know that even when you don't get the 'yes' when you need it, you won't be deterred from your mission. "Be willing to fall, to make mistakes, and learn from them. We all realize that's one of the better teachers anyway," she says.
It's Easy To Get Discouraged - Guard Against It
Catherine Logan-Carrillo's endurance is sustained through networking with other leaders. "Peer support for leaders of support groups is extremely important. It's very easy to get discouraged and lose focus when it becomes hard work to keep going and some of the original creativity and fun has worn off. By getting together with other leaders, we feel restimulated and remotivated."
Sharon Cure and Denise Ballard agree. The Karmanos Cancer Institute has established a focus group for support group facilitators and patient educators. It gives the group leaders a chance to get to know each other better, learn how to cope with the continuous challenges of group leadership, and avoid burnout.
Enlist a Core Group of Committed People
Starting a survivorship program is a monumental task. You shouldn't have to go it alone. With a core group of active planners and builders, you can spread out the responsibilities, learn from the experiences of many, expand your network, and elicit the varied skills you'll need to succeed.
Match the skills of your core group members and staff with the needs of the organization. You'll need people with experience in fundraising, marketing, and planning. Members with good interpersonal skills can work on outreach, ensure that members feel connected, or check in with members who lose touch.
Even though People Living Through Cancer started with a group of five cancer survivors, Catherine looks back and sees that their small group could have benefited from some additional members, so they didn't have to depend so much on so few individuals.
Members of the core group can provide backup for each other, which is critical for survivors of a life-threatening illness. "Sometimes we forget that we are all subject to our personal illness. We get so wrapped up and so involved and we don't remember that we should be taking it easy," Jackson says. "You never know if a survivor will be unable to complete a task that she committed to doing." Prepare for that.
The WAVE support group, which is facilitated by trained health professionals, provides backup through co-facilitation. If a facilitator has had a rough day, the co-facilitator can lead the group for that evening's session. Co-facilitation also helps in the event that one facilitator moves away or takes another job. Part of the strength of a good group is the rapport between members and facilitators. If someone whom the group already knows is ready to step in, many transition difficulties can be avoided.
Establish Reliable Funding Sources Early
Finding financial resources for a program is something everyone has to do. All of the leaders interviewed for this guide said they wished they had established reliable funding sources earlier.
Consider including in your core group someone who already has fundraising skills and knows the grant-writing process.
Questions To Ask Yourself:
- What will the funds be used for?
Do you need to cover costs of supplies, refreshments for the group, speaker fees, facilitator training, location rental, photocopying, postage, or computer needs? "Food is very much a part of the social atmosphere in the African-American community," says WAVE's Denise Ballard. If providing a snack, meal, or beverage is important to help the participants relax and open up, make sure to budget for it. If funds are tight, use a sign-up sheet asking participants to bring a snack for one meeting. This process can help foster group ownership and encourage sharing.
- What are potential funding sources?
Look at the population you are trying to reach and think about who provides services to them. Establish a key contact list of community members and others who are able to provide funding or help you identify sources of funding. Establish a broad base of funding. Don't rely on just one source.
Some funding options worth exploring are:
- Local businesses that see your audience as their customers (e.g., clothing stores, banks).
- Community foundations.
- Local cancer centers, hospitals.
- State health department (the director of public education may be a good place to start).
- Pharmaceutical companies. (The headquarters' office should be able to provide the name of a local representative. A pharmaceutical directory is available by writing to:
- Pharmaceutical Research and Manufacturers of America, 1100 Fifteenth St., N.W., Washington, DC 20005.)
Learn About Local and State Policies
Often local or state statutes offer support for community groups. For example, your state may have a "cancer plan," which mandates certain programs and may include support for outreach. Find out if any local or state policies might be able to provide you with assistance or leverage in dealing with other local organizations. Ask your state health department if such a plan exists and if it provides support to reach cancer survivors from minority or underserved populations. If it doesn't, you may want to work with the health department to ensure that support for survivorship is included in future programming. People Living Through Cancer did, with good results.
PLTC worked through the state legislature to raise funds for survivorship. The funds were made available through the health department, which solicited applications for worthwhile projects. PLTC applied for and received funds that were specifically earmarked for reaching underserved populations.
Some of the projects described in this guide started with funds from their state health department's Breast and Cervical Cancer Early Detection Project, a program funded by the Centers for Disease Control and Prevention. This program was committed to reaching minority and underserved women and so had funds targeted for minority programs. Through this project, Rev. Davis became established as the point of contact for other churches interested in becoming involved in cancer outreach.
Cigarette tax revenues in some states support cancer-related programs that range from basic research to clinical services. California's tobacco tax has raised millions of dollars for health programs. Michigan has a similar program. Check with your state health department to see if tax-related funds are available for your program.
The Resources section has more information on fundraising.
Ask Your Audience: What Do You Need? What Do You Want To Know?
Survivors are interested in topics ranging from legal and financial issues to medical research and genetic testing. Information needs will change over time, so a periodic survey to determine member interests will help you choose topic areas that are most important to your members. A local cancer center or hospital can help locate speakers for many of these topics. Organizations like the National Cancer Institute's Cancer Information Service (CIS) and the American Cancer Society (ACS) also have access to speakers bureaus (see Resources).
Speakers attend WAVE sessions quarterly and have addressed many of the issues facing cancer survivors, including coping strategies, management of treatment side effects, coping with changes in self-image, maintenance of healthy lifestyles, legal issues, and financial resources.
WAVE held a fashion show and prosthetic fittings for women who have had mastectomies. A session on intimacy and sexuality was very popular. When WAVE members revealed that they weren't getting information on the latest research in cancer, speakers were invited to present information on treatment and prevention research. Women brought family members to that session.
"If you ask members of WAVE where they get their greatest support, 99 percent would list God among their top three sources," says Denise Ballard. Spirituality is a common theme at WAVE meetings and every year a nun who works as a pastoral care counselor at a neighboring hospital runs a group session devoted to helping members focus on and appreciate the role spirituality plays in their recovery.
The group uses a lot of exercises to build participants' skills in communicating with family members and their physicians and in setting goals for themselves. Open sessions also provide a chance for members to bring up whatever issues they'd like.
The Sisters Network, Inc. national newsletter keeps members up to date on medical advances through a column by a physician who answers survivors' questions about current research.
Anna T. Meadows, M.D., director of the National Cancer Institute's Office of Cancer Survivorship, suggests that support programs can also help survivors understand that they are entitled to good follow-up medical care and to help them learn what that is. She suggests finding a resource, such as a physician familiar with cancer treatments, who can give survivors a picture of what they can expect, what long-term health effects may result from certain treatments, and what kind of physicians should be providing follow-up care. She uses an example of a young woman whose treatment has caused her body to stop producing estrogen. Is someone paying attention to replacing her estrogen appropriately to preserve her sexual function and maintain her bone density?
To those who are concerned about upsetting or unduly worrying survivors about their future outlook, Dr. Meadows responds: "Ignorance doesn't usually help. It may seem hard at first to learn about potential future problems, but once you start exploring issues and are able to gain some control over your future health, you are bound to feel better."
Establish and Promote Your Identity
It's an Ongoing Process!
Initial impressions can have a lasting impact on a program's reputation. Carefully consider all elements that will represent your group to the community, including:
- Name, vision, and mission.
- Strategic communications messages and talking points.
- Media relations and marketing.
What's in a Name?
Women Achieving Victory and Esteem
Many of the women WAVE was hoping to reach had the impression that support groups were for people who were depressed. "We wanted to express that women came to this group because they had something to share with other women," says Sharon Cure, so they went for the upbeat name. Participants want something to feed them spiritually and socially. Occasionally people need to cry, but the main focus is to uplift members by helping them develop coping skills.
Celebration of Living
"The name really came out of the air," admits Rev. Davis. "As a minister, I knew that our church members were living and enjoying the Lord. We feel very strongly about living every day and having a joy for every day." And so, Celebration of Living was born. "People who feel hopeless die. We want to encourage them to live."
Mission Possible
A mission statement should clearly and concisely communicate the primary purpose of an organization and include what distinguishes that organization from others.
A vision statement is a loftier expression, designed to reflect both an organization's desired impact and the value of its existence.
The following are just a few samples of the missions and visions of the survivor groups.
People Living Through Cancer
Mission: As a grassroots organization, PLTC is committed to provide peer-support services to people who have personal and family experiences with cancer.
Together we share with one another as a community of people who have been there.
We help one another make informed choices based on individual values and lifestyles.
We strive to help each other improve the quality of our lives.
Celebration of Living
Vision: To provide an opportunity for those who are strong to bear the infirmity of those who are weak. To create an atmosphere for the love of God to be shared among hurting people of our community by men and women who care and can become advocates for health and healing in places of worship and in the community where they serve.
Speaking With One Voice
Strategic communications messages or "priority messages" are a series of succinct points that convey the most significant pieces of information about an organization, including the purpose, reach, and impact of the organization. They should be easily memorizable so that they can be used as stand-alone talking points in presentations or discussions. They can also be used in written materials as building blocks to be followed by supporting information that is tailored for the intended audience and the specific piece being developed. When an organization has more than one spokesperson, which most do, everyone who discusses the organization should be able to comfortably use the strategic communications messages, so that everyone is speaking with one voice.
People Living Through Cancer has a one-page list of "priority messages" that is distributed to all board members and staff. "We have a formal training of our board members to focus on important issues," Logan-Carrillo says. "We expect them to be networking and talking with people about PLTC; we want to make sure they understand the organization and its goals."
Two sample PLTC messages:
- PLTC's peer support programs, which have a 15-year track record, are skillfully led and skillfully managed.
- We need the support of the people in the community to keep our program going.
With 18 chapters, Sisters Network, Inc. has many people speaking on its behalf and therefore, must ensure consistency of messages. The organization's Guide for Chapter Presidents contains press releases and public service announcements that chapters can use to gain media attention for their activities.
Know Your Local Media
Determine which channels your audience prefers
What radio stations do they listen to? What are their favorite newspapers or magazines? Talk to your audience about their media preferences. Or form a steering committee to investigate and develop a list of media contacts that your organization should try to reach.
Utilize Minority Media Outlets
Media directories can be found at the local library. Don't forget the growing cable television market as well. Try to get some help from a colleague who regularly works with minority media outlets.
Rev. Davis hosts a half-hour radio program on a local black gospel station. He calls it "Celebration of Living" and utilizes it as one more outlet to encourage hope and living.
Piggyback with long-standing events that are likely to attract the media
When Sisters Network, Inc. first started, Karen Jackson used the popularity of a known event, Race for the Cure, to publicize the organization. She appeared on an African-American television talk show and encouraged women in the community to participate in the Race. This gave her a chance to introduce Sisters Network as well.
Similarly, Sisters Network members appeared on a panel discussion and exhibited at a conference for battered women. Everyone who attended received a pink ribbon to represent the fight against breast cancer. "We needed the exposure and women needed the knowledge. The combination was a win-win situation," recalls Karen Jackson.
Reaching Out To Bring People In
People Living Through Cancer wanted to serve the varied populations of New Mexico, which meant reaching out beyond those survivors who proactively came in search of PLTC's services.
Many of the people who may benefit from your services will not jump at the first chance to join your program. Rev. Davis explains, "Sometimes, people with cancer don't even know to ask for a chaplain or preacher, they rely solely on their medical support system. They won't even tell you they have a need. But just because a person doesn't tell you, doesn't mean they don't need you. You have to reach out."
Consider joining influential organizations that could extend your reach the Houston Area Cancer Awareness Coalition has an advisory council of health providers and business people who can spread the word about Sisters Network.
Make sure that all relevant organizations know about your program
The Cancer Information Service (CIS) and the National Coalition for Cancer Survivorship (NCCS) receive requests for information on local and national support groups. Initiate a call to CIS, NCCS, and other national organizations to let them know about your group and how interested individuals can contact you. Your local hospitals may have referral services whose staff should be familiar with your program, so that, if a survivor calls in search of support, your name will come up. Visit these referral services to tell them about your program. If the community section of your local newspaper publishes a weekly list of community support groups, get your group onto that list. Any self-help clearinghouses in your area should know about you as well.
Making Follow-Up Consistent and Timely
People Living Through Cancer (PLTC) has developed a strong infrastructure to ensure appropriate follow up. Full-time staff are responsible for taking calls and following up to make sure people stay connected. The caller's situation and his or her request are documented on a duplicate intake form. Copies of the completed form go to PLTC's database, to a facilitator if the caller is joining a group, and to PLTC's director of support services. People who call PLTC receive a follow-up call to determine if their needs were fulfilled. PLTC also mails an evaluation form to people who call requesting support services.
"People are very often in crisis or in a situation in which they are trying to manage major healthcare issues, jobs, homes, and families. Just calling a stranger when you're in the middle of a crisis is a major thing. Even with our comprehensive follow-up, many of the people who call looking for a support group never show up at a group. It's very hard to walk into a group of strangers when you don't know what is going to happen. So we follow up by telephone to talk, get to know them, and link them with other services. We keep reaching out, but we're careful to allow survivors to let us know if they don't want to hear from us again. We also do a standard mailing to everyone who calls so they get basic information on our programs again in writing," explains Catherine Logan-Carrillo.
Some of the Karmanos Cancer Institute support groups enlist group members to handle follow-up. This approach sets up clear responsibilities and places partial ownership for the group's success in the hands of group members. Members who take on this role, which can be rotated to avoid burdening any one group member, fill out a form that goes to the group facilitator describing the outcome of the contact. They also receive cards with stamps on them to send notes to members on special occasions. "You're giving them the car and they're driving it," says Cure.
Lean on Others: Establish Collaborative Reciprocal Partnerships
By pooling your resources toward common goals, you can create programs with wider reach and greater impact.
Through partnerships, you can:
- Enhance services.
- Avoid duplication and boost coordination.
- Improve your credibility.
- Gain access to skills, resources, and leadership (e.g., universities may be able to provide evaluation help, a local printer may be willing to reproduce your flyer or newsletter for free or at a reduced price).
- Share responsibility.
- Broaden your reach.
The examples below illustrate the benefits of partnerships:
With the support of the Indian Health Service (IHS), People Living Through Cancer conducts two training sessions each year for American-Indian survivors (both Native Americans and Alaskan Natives) who plan to start survivorship programs in their communities.
People Living Through Cancer has been able to expand its partnership with the Indian Health Service, which is completing a formal evaluation of the Pueblo Program to see if the program makes a difference to its users. "IHS is a strong supporter of survivorship in Indian country, and wants to be sure its money is well spent," says Catherine Logan-Carrillo.
Celebration of Living's partnership with the University of Alabama (UAB) and the state health department brings credibility to his program, but Rev. Davis maintains leadership control of the group. He knows best how to reach members of his parish and other churches and he makes sure to let his health professional colleagues know that.
The UAB Psychology Department is helping Celebration of Living develop an evaluation for the program. UAB and the state health department are joining Rev. Davis and The Wellness Community, a Cincinnati-based support program with offices nationwide, to study the impact of spiritual counseling. They plan to begin a pilot study comparing the effect of a traditional psychosocial support program with the same program plus a spiritual counseling component.
A note of caution from Rev. Davis: He has hit roadblocks when going to some potential partners for assistance. In his particular case, one organization was a barrier to his fundraising efforts in Alabama. "They wanted to use me for their fundraising." With any potential partner, develop a clear understanding of what they expect from the relationship and agree to work together only if the arrangement provides the support you need while keeping you on mission.
The Sisters Network chapter in Queens, New York, established a partnership with Adelphi University, which provided facility space and support, making it easier for the group to meet regularly.
The Austin, Texas, chapter of Sisters Network was able to work with the American Cancer Society (ACS) for the "Gift for Life Block Walk," an annual educational outreach project that sends trained breast cancer survivors and community volunteers into neighborhoods door-to-door to distribute early detection information and provide breast cancer screening. ACS provided resources and printed materials.
Other potential partners include, but are not limited to:
- American Society of Clinical Oncology
- Association of Asian/Pacific Community Health Organizations
- Association of Oncology Social Workers
- Black sororities and fraternities
- Cancer Care, Inc.
- Candlelighters Childhood Cancer Foundation
- Leukemia Society of America
- Local hospital and medical center
- National Alliance of Breast Cancer Organizations
- National Black Women's Health Project
- National Breast Cancer Coalition
- National Coalition for Cancer Survivorship
- National Coalition of Hispanic Health and Human Service Organizations
- National Prostate Cancer Coalition
- Native American Research
- North American Brain Tumor Coalition
- Office of Minority Health, U.S. Department of Health and Human Services
- Older Women's League
- Oncology Nursing Society
- Susan G. Komen Breast Cancer Foundation
- The Links
- US-TOO International
- Y-ME National Breast Cancer Organization
Evaluation — Is It Working? Are We Making a Difference?
Evaluation is an essential piece of any program. After you've set specific program goals, you'll want to evaluate your program's ability to meet those goals and look for ways to pinpoint any shortcomings in your program. Not only does establishing a good evaluation system allow you to better serve survivors and your community, but it also gives you an opportunity to concretely illustrate your success to potential partners, funding organizations, or future members.
There are three major phases of evaluation:
- The needs assessment is the formal evaluation you complete before beginning a program. Finding out what your audience needs and how best to communicate with them is essential to guide the development of your program.
- Process evaluation occurs while your program is running to examine the tasks and procedures involved in implementing your program. You may see that your follow-up measures need some adjustments or that members want information on a topic that did not come up during the needs assessment phase of planning (WAVE added workshops on nutrition and smoking cessation, based on member requests). You can make adjustments at midcourse to fix the problems you see along the way.
- Outcome evaluation is critical for determining whether your program had the desired impact on your target audience. This evaluation should test your success at reaching the goals you set for the program. Often, organizations that provide financial support for your program will expect to see outcome results.
The goals that you set should be specific, realistic, and measurable. For example:
- "We intend to enroll 20 American-Indian cancer survivors in 1998."
- "We will provide spiritual support to 50% of all survivors in three churches in 1998."
- "Between June and December 1998, we intend to recruit and train five Hispanic volunteers to do outreach on survivorship within 5 communities."
- "In six months, at least 75% of our support group members will have increased their knowledge about survivorship issues and at least 65% will feel that their coping skills have been enhanced."
(You could do a pre- and post-test, asking the same set of questions at the start of the program and at the end of 6 months, to determine whether your audience's knowledge and attitudes changed after participating in your program.)
Evaluation specialists can be found through a local health department, public health or medical schools, or in a research department of a local college or university. If a grant-making organization requests that you provide evaluation measures, it may be able to help you find an expert in evaluation to give you advice on evaluating your program.
Your group or community is usually the best source for suggestions for improvements in your program. To gather these ideas, WAVE sends a postage-paid postcard to all participants that asks four satisfaction questions: Was the group helpful? If not, what were the reasons? What would you change? What subjects would you like to see addressed at future meetings? Would you recommend the group to a friend who needed assistance? Respondents can choose whether or not to sign their name on the card, but if a person has had difficulty with the group, Sharon Cure will always call the person, if her name and number are provided, to learn more about her experience and offer additional help.
Sisters Network, Inc. is beginning to evaluate its growth. Having expanded to 18 chapters in three years, they are asking themselves "How fast should we grow? How many people do we expect to reach? Is our outreach method working?" Growth has been rapid and has outpaced accessible funding. "We want to do what we're doing well before we expand further."
Develop a Strategic Plan — After a Little Experience
None of the four programs described in this guide started out with a formal, written plan. They all felt the need to get their feet wet first. Once they got rolling, establishing a plan helped them stay on track and gave them something to measure their accomplishments against.
"Less knowledge is sometimes a blessing," Karen Jackson admits. "We didn't have a plan at the beginning, we just started networking and supporting each other. If I had realized the magnitude of the task, Sisters would never have happened. Sisters Network, Inc. now has developed programs and an infrastructure specific to its needs."
Similarly, People Living Through Cancer developed a five-year strategic plan after eight years of activity. "What the plan did for us, at a time when we were beginning to burst forward with a lot of growth, was that it kept us focused. It was a way to monitor our growth so we didn't get pulled off track by a funding source or another organization that wasn't really part of our primary purpose. We defined our specific goals and stayed with them through careful, thoughtful periodic planning," explains Catherine Logan-Carrillo.
Because it was one of several support groups within the Karmanos Institute, WAVE leaders were able to utilize already existing guidelines, policies, and procedures.
The Highest Quality
A few other documents can help you develop and maintain a program of high-quality information and service to racial and ethnic minorities.
Standards of excellence
PLTC's Catherine Logan-Carrillo has developed standards of excellence that provide guidance for programs committed to continuously improving the quality of their programs.
Policies and procedures for starting a support group
Both the Karmanos Institute, WAVE's parent organization, and Cancer Care, Inc. have published detailed guidelines for starting a support group. (See Resources for contact information.)
Words of Wisdom
- Share your successes and struggles with others — be honest about the struggles.
- Remember the value of partnerships.
- Make a reference list of the resources you utilize and find helpful.
- Take advantage of every opportunity to participate in training and professional development events.
- Always think about evaluation, from the very beginning
If I Knew Then What I Know Now...
Other than its medical advisory group, Sisters Network, Inc. relied solely on survivors for information during its first three years. The group has begun reaching outside of the survivor community for certain types of expertise when necessary. Karen Jackson suggests doing that sooner.
Periodic rejuvenation is essential, shares Jackson. "You have to find someone who can keep you going. Support provided through Sisters Network is unconditional and goes beyond monthly meetings. Support is meaningful when, at 3 a.m., a member can reach out to a sister who will understand, listen, and respond with help. This type of support is difficult to find in other settings. We also share in many joyful celebrations."
Because WAVE's initial planning group comprised survivors of breast cancer only, the group had a difficult time recruiting survivors of other cancers. WAVE's founders suggest that your planning group represents the full range of the audience you hope to reach.
Incorporate facilitator back-up and support from the beginning, Denise Ballard adds. "People talk about working with churches, but they are really utilizing a psychosocial approach. Many pastors are doing the same thing, because they were trained that the psychosocial approach was the only way." Rev. Joseph Davis sees a clear distinction between psychosocial and spiritual support. "Psychosocial utilizes the mind. Spiritual deals with a different part of the psyche. Support for that work must come from spiritual leaders," he stresses.
The four programs that made this guide possible know that a booklet alone will not suffice. They encourage you to contact them if you have questions about starting a survivorship program for minority audiences. There is no substitute for contact with supportive, understanding people.
Celebration of Living
102 Carver Circle
Eutaw, AL 35462
Contact: Reverend Joseph W. Davis
205-372-3681 phone & fax
People Living Through Cancer
323 Eighth Street, SW
Albuquerque, MN 87102
Contact: John Lucas or Gena Love
505-242-3263 phone
505-242-6756 fax
PLTC has developed many training programs for survivorship leaders.
Sisters Network, Inc. National Headquarters
8787 Woodway Drive, Suite 4207
Houston, TX 77063
Contact: Karen Jackson
713-781-0255 phone
713-780-8998 fax
http://www.sistersnetworkinc.org
Sisters Network has a national newsletter and has developed a guidebook for all Sisters chapters.
Women Achieving Victory and Esteem (WAVE)
Barbara Ann Karmanos Cancer Institute
110 E. Warren Avenue
Detroit, MI 48201
Contact: Denise Ballard
313-833-0715 ext. 7304 phone
313-831-4039 fax
The Karmanos Institute has developed a factsheet on developing support groups with details on planning and dealing with difficult group members. It has also developed an extensive directory of services. Your local cancer center or hospital may have a similar directory.
Favorite Resources for Minority Cancer Survivorship Programs
The four programs found certain support and advocacy organizations, written materials, outreach programs, and services useful resources as they developed and sustained their programs.
Organizations
Advocacy and Survivorship
The National Coalition for Cancer Survivorship
1010 Wayne Avenue
Silver Spring, MD 20910
301-650-8868 phone
1-888-650-9127 phone
301-565-9670 fax
http://www.canceradvocacy.org
Their newsletter "NCCS Networker" is available with membership.Some of their most helpful materials:
Mutual Aid or Peer Support Services
The American Self-Help Clearinghouse
St. Clares-Riverside Medical Center
25 Pocono Drive
Denville, NJ 07834-2995
973-625-7101 phone
973-625-8848 faxTwo of their most helpful materials:
- The Self-Help Source Book: Finding and Forming Mutual and Self-Help Groups
- Guidelines for Starting Groups (free with a self-addressed, stamped envelope)
Nonprofit Organizational Development
The Support Centers of America
706 Mission St.
5th Floor
San Francisco, CA 94104
415-541-9000 phone
415-541-7708 fax
http://www.supportcenter.orgThe Support Centers of America is a nonprofit organization founded in 1971 to increase the effectiveness of charitable organizations. Regional offices throughout the United States:
- Sponsor workshops.
- Provide direct assistance to leaders of nonprofit organizations.
- Offer telephone service to answer questions about managing a nonprofit organization.
- Sponsor a business volunteer program that provides volunteer professionals, such as accountants, to small nonprofit groups.
- Refer callers to other resources in their communities that can provide technical assistance.
Public charities, private foundations, and corporate grantmakers
The Foundation Center
79 Fifth Avenue
New York, NY 10003-3076
212-620-4230 or 1-800-424-9836
212-691-1828 fax
http://www.fdncenter.org
Cancer Issues in Minorities
The Minorities, Medically Underserved, and Cancer Biennial Symposium Series
Symposium Office
1720 Dryden, Suite C
Houston, TX 77030
713-798-5383
713-798-3990 fax
*Next meeting: February 27-March 3, 1999 in Washington, DCThese meetings are held every other year and provide a meeting place and learning environment for people interested in cancer issues for minorities.
Journals
Fundraising
Grass Roots Fundraising Journal (monthly $25)
PO Box 11607
Berkeley, CA 94712
510-704-8714The Chronicle of Philanthropy (biweekly: $67.50/year)
PO Box 1989
Marion, OH 43306-2089
Nonprofit organizational development
Non Profit Times (monthly-free)
240 Cedar Knolls Rd., Suite 318
Cedar Knolls, NJ 07927
973-734-1700
Books
Survivorship
A Cancer Survivor's Almanac: Charting Your Journey
Barbara Hoffman, JD
Chronimed Publishing, 1996
1-888-650-8868 phone
301-565-9670 fax
Click here to order.Facing Forward
National Cancer Institute, NIH, USDHHS
Cancer Information Service
NIH Publication Number 90-2424, 1994
1-800-4-CANCER (1-800-422-6237) to orderTriumph: Getting Back To Normal When You Have Cancer
M. Morra and E. Potts
Avon Books, 1990
Training Program
The Cancer Journey: Issues for Survivors
A Training Program for Health Professionals
National Cancer Institute, 1997
1-800-4-CANCER (1-800-422-6237) to order
Contains a Leader's Guide and 30-minute videotape
Multicultural Issues
Transcultural Nursing Assessment and Intervention
JN Giger and RE Davidhizer
Mosby Year Book, Inc. 2nd edition, 1995
A resource for information on various cultures in the United States in relation to health beliefs and general attitudes.
Cancer and Treatment
Everyone's Guide to Cancer Therapy
Malin Dollinger, M.D. & Ernest H. Rosenbaum, M.D.
Somerville House Books Limited, 1994Selected Articles on the Benefits of Survivor Support
- The effects of psychoeducational care provided to adults with cancer: Meta-analysis of 116 studies. Elizabeth Devine and Susan Westlake. Oncology Nursing Forum. 1995;22(9).
- Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Spiegel, D, Bloom, JR, Kramer, HC, Gottheil, E. Lancet. 1989 Nov. 18;2(8673)1209-10.
- A short-term psychoeducational intervention for patients newly diagnosed with cancer. Fawzy, FI. Support Care Center. 1995 Jul;3(4):235-8.
"Early-stage interventions that encourage active behavioral coping and active cognitive coping rather than avoidance or passive acceptance of the illness can be helpful psychologically. [These learnable behaviors] can reduce the psychological distress caused by illness, decrease the amount of psychological adjustment needed, improve overall quality of life, and may also be associated with longer survival times."
Telephone and Internet Resources
Cancer Information Service
National Cancer Institute's Cancer Information Service (NCI's CIS)
1-800-4-CANCER (1-800-422-6237)
TTY: 1-800-332-8615
http://www.nci.nih.gov (Click on "patients, public, and the mass media")The CIS, a national information and education network, is a free public service of the National Cancer Institute (NCI), the nation's primary agency for cancer research. The CIS meets the information needs of patients, the public, and health professionals. Specially trained staff provide the latest scientific information in understandable language. The CIS outreach program partners with organizations that reach underserved populations to ensure they have access to the latest, most accurate information from NCI.
Teleconferences on management of support groups
Cancer Care, Inc.
1180 Avenue of the Americas
New York, NY 10036
1-800-813-HOPE (1-800-813-4673) counseling line
http://www.cancercare.orgCancer Care, Inc. provides professional one-to-one counseling, support groups, educational programs, workshops, and teleconferences to cancer patients and their families. Cancer Care, Inc. has information on how to start a cancer support group.
