A University and Community Partnership for Cancer Control Education

Jane Isaacs Lowe, Ph.D.
LDI Senior Fellow, Assistant Professor, University of Pennsylvania School of Social Work

Frances K. Barg, M.Ed.
Coordinator, Cancer Control Education, University of Pennsylvania School of Nursing

Sandra Norman, Ph.D.
LDI Senior Fellow, Senior Research Investigator, Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine

Ruth McCorkle, Ph.D.
Professor, University of Pennsylvania School of Nursing

Urban medically underserved communities have disproportionately high rates of morbidity and mortality from cancer. In a collaborative effort, the University of Pennsylvania Cancer Center, the Schools of Social Work, Nursing and Medicine, and the surrounding neighborhood developed a school- and community-based education program in cancer control. This Issue Brief describes the program and its lessons for community interventions around cancer prevention and early detection.

Program transfers state-of-the-art information on cancer prevention, detection and treatment to an inner-city population

The program is a unique partnership among a university, an academic medical center, a public school, a community hospital, a non-profit arts group, and community organizations. Using a participatory action research model, all partners helped to plan and implement the program. Specific aims include:

to assess the health beliefs and practices of the community in order to develop culturally relevant materials and educational programs.
to identify and train community residents as health educators who would implement the educational programs.
to promote behavioral change by helping people adopt specific preventive strategies and by linking them to existing resources.

Community health beliefs and practices explored through existing data sources, meetings with community leaders, focus groups and a telephone survey

To assess community needs, focus groups were held at block meetings, senior centers and public schools. A random telephone survey was completed in the targeted community. This analysis revealed the following community health beliefs and practices:

A majority of the population surveyed is taking advantage of some form of cancer screening. Although there is high reported use of mammography and pap screening, respondents do not always adhere to recommended guidelines.
While myths about cancer are prevalent, there is an emerging awareness that cancer is not always fatal and does not always cause pain and suffering. However, there is a general lack of knowledge about the latest treatment advances in cancer.
Religion is an important source of comfort and healing when confronting cancer.
The health care system is not always sensitive to the needs of African-Americans, and thus may not provide optimal care.

Educational materials developed to address specific cancers as well as a range of health and social concerns

Based on the community analysis, culturally relevant educational modules were developed and tested. Because cancer control education does not exist in isolation from other needs and concerns, a manual of health and community resources was also developed.

Educational modules included information on breast and cervical cancer, colon cancer, prostate cancer, tobacco control, nutrition, and access to care.

The resource manual included information on Medicaid, Medicare, food stamps, housing, legal assistance, child care, job training, and other educational programs.

Health educators recruited from the target community

Ten residents (eight women and two men) were identified through community organizations. Each participated in three two-hour training sessions at a community hospital.

Health educators became familiar with data from the community analysis and the content of the educational module. Training included techniques for building communication and group skills.

Each health educator was paired with one of four project staff members. The staff member maintained regular contact with the health educators to help them design programs, to monitor their teaching, and to help them secure appropriate educational resources.

Health educators reported increased confidence in their ability to explain the importance of cancer screening. They reported an increased ability to dispel community myths about cancer, and to help others become better consumers of health care.

Intervention designed with community- and school-based components

An intergenerational model for the intervention was developed that included community organizations and a public school. This model enabled teachers, students and community residents to learn about cancer prevention and detection in the course of their daily lives.

Health educators adapted the educational modules to include strategies for enhancing overall health. They focused on decision-making, maintenance of existing healthy behaviors, and the development of new health practices.

Programs were planned around existing social networks to gain access to larger numbers of people.

Using a developmentally and culturally appropriate curriculum, masters-level nursing students taught a 10-week course on cancer prevention and early detection to seventh graders. A nonprofit arts group helped students translate concepts into health messages appropriate for early adolescents and younger children.

Successful community programs focused on breast and cervical cancer, smoking cessation and nutrition

During a 16-month period, community health educators led 38 programs reaching 775 people. The primary sites for these programs were churches, schools, senior centers, neighborhood block association meetings, and other community organizations.

One health educator, working with a nutritionist from a local food market, conducted a series of evening cooking classes demonstrating healthy food preparation. Participants produced a cookbook with educational materials on nutrition.

Another health educator developed an anti-smoking program for children ages 10-13 who are junior block captains. This led to an educational session for adults given at a block captain's meeting.

Eight health educators organized a program held at a community hospital. It featured a play ("Where's Shirley") about the importance of breast cancer screening for African- American women, and included a lesson on breast self-examination.

Community programs promoted behavioral change

Originally, the program included a written "contract strategy" to measure behavioral change. Based on feedback from health educators, this proved too complex for the educators and was met with suspicion by the participants. Project staff worked with the health educators to redesign the evaluation.

Each community health educator documented the content of all programs, the materials used, and the location and number of participants at each session.

Health educators made a followup telephone call to each participant, to identify any behavior changes and to assist participants in overcoming barriers regarding access, logistics and fears.

In some cases, health educators accompanied women to mammography screening, helped to secure insurance information, and linked individuals to smoking cessation courses.

School program spawned video, quilt and support group

From 1993-1995, the school program reached 264 seventh grade children. It demonstrated that middle school children can be effective health educators of their peers and adult members of the community.

Students scripted, animated and narrated a video on smoking, which was featured on a nationally syndicated news program ("Nick News"). They use the video when they present educational programs to elementary school students.

Students designed a silk patchwork quilt with messages related to nutrition and healthy eating (e.g. "Vegetables are phat!"). The quilt was displayed at the Philadelphia Museum of Art and several local galleries.

A large number of children were caring for a serious ill parent or grandparent at home. In response, the school will develop an afterschool support group for these children, in which they will learn caregiving skills and well as derive emotional support.

Pre and post testing of students, through focus groups and questionnaires, showed improvements in knowledge about cancer prevention. More importantly, students showed a more positive attitude about their ability to control their own health.

Lessons learned

This project offers important lessons for organizing a community health program and promoting change on an individual and community level.

Small scale interventions, using trained lay educators, can be effective and sustained in the community.

Culturally appropriate interventions are most successful when they are piggybacked onto other activities, such as choir practice, a neighborhood block meeting, or a senior center lunch program.

New approaches are needed to reach men in the community. Although the program included two male health educators, men were resistant to educational interventions.

Policy implications

More focused efforts are needed to identify people who are underserved in the community, to assess their health status and beliefs and to involve them in education and screening. Traditional methods of survey and intervention research must be supplemented by other ways to reach the underserved.

Health education programs must be prepared to address other issues of daily living that arise and often interfere with an individual's use of information and ability to change behavior. This include addressing the external barriers to health care frequently encountered by inner-city African-Americans.

Health professionals must develop and refine their knowledge base related to communities. Faculty and students should work with community residents to design interventions that build on existing social capital, such as networks of civic and neighborhood organizations.

To sustain their work, lay health educators must be integrated into a primary health care system, rather than remaining marginal to it.

Interventions have a greater likelihood of success when they involve community leaders and associations, educate individuals and groups, and change the social and environmental factors that cue and reinforce health-related behaviors.

This brief is based upon the Final Grant Report to the National Cancer Institute. November 1995, and the following articles: J.I. Lowe, F.K. Barg and M.W. Bernstein, Educating African-Americans about cancer prevention and detection: a review of the literature, Social Work in Health Care 1995;21:17-36; F.K. Barg and J.I. Lowe, Cancer control education: strategies for culturally appropriate learning in an urban middle school, Journal of School Health (in press); J.I. Lowe, F.K. Barg and K. Stephens, Using community residents as lay health educators in a neighborhood cancer prevention program, Journal of Community Practice (under review).