Understanding Cancer: A Guide for Appalachian Community Members

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Contact Information

Project Summary

Understanding Cancer was developed in response to a call from grassroots coalitions to develop an easy to read resource with basic cancer information to use with people who are traditionally hard to engage. The program was collaboratively developed and tested by the Appalachia Community Cancer Network (ACCN). University members include Ohio State, Penn State, University of Kentucky, Virginia Tech and West Virginia University. Northern Appalachia Cancer Network based at Penn State Cancer Institute is a part of the ACCN. The program is organized around five chapters (What is cancer; How to prevent cancer; How to detect cancer early; How is cancer diagnosed and treated; How to fight cancer in your community). The materials were developed to be used by community partners and can be used to train others (new staff, volunteers, survivors, etc.) using easy to read and understand language to educate the public about cancer. It was offered as a Train-the-Trainer because we were trying to test the dissemination of this low-literacy cancer education program and to gain feedback on dissemination and the utility of the program in the community. The program includes easy to read summaries with lots of headings; each chapter ends with a list of action steps and a list of additional resources – people to talk to, places to call, and websites. Each section includes a short chapter of text, a word list, Pre and post training surveys, and Power Point slides. It can be used together or as stand-alone pieces. The program was field tested and reviewed by community partners at every step of development.

Project Goal

The goal of Understanding Cancer was to provide a plain language resource for our coalition partners to use with community groups or in clinical settings to educate patients and family members or to talk about prevention or early detection. In the words of a train-the-trainer program participant in Virginia, "Hearing the word 'cancer' is a frightening experience. Knowledge presented in a way that relates to non-clinicians steals some of cancer's strength by making it more understandable. Tools such as Understanding Cancer are invaluable in the education process that weakens cancer's power over us."

Promotional Methods

This train-the-trainer curriculum was rolled out across five states (KY, OH, PA, VA and WV) with the goal of training at least 150 trainers. To promote the trainings, we used e-mails and other communications with community partners to disseminate information about the training. One training in PA was offered during the afternoon of a one day health disparity research roundtable conference, another was held as a regional training at a small hospital co-hosted by a cancer coalition. Some programs in VA were co-sponsored by a Nursing School.

Project Challenges

It was difficult to recruit participants to a train-the-trainer for Understanding Cancer. Successful methods to overcome this challenge were to have coalitions invite members to a training in their community, provide the training as a part of a larger group meeting, and work with nursing instructors to offer the program to their nursing students. Here are some of the lessons learned: • Community engagement and feedback are key to developing a successful, culturally sensitive product • Build in time for multiple reviews • Do not assume that people working in healthcare have a proficient understanding of cancer or health literacy

Project Results

Results are as follows: There was a 3% gain in knowledge in pre/post-test scores. There was no significant change in willingness to communicate with others, healthcare actions, or preventive actions for trainees between baseline and > 3 months post training. After the training, the program was further disseminated to 415 people at 54 different training sessions. A pre/post-test model was used to measure a change in knowledge. Additionally changes in attitudes and behaviors were assessed for all participants using participant information forms, evaluations, healthy changes checklist, and trainer activity reports. The findings are as follows: • Trained 163 trainers across four states at 13 sessions • Female: 86.5% • Male: 6.1% • Average age: 42.9 • Race: 83.4% white, 3.7% black, 2.5% Hispanic • Mostly educated • Some college: 4.5% • College degree: 32.6%

Organization Type

Academic Institution

Types of Practices

  • Community

Target Age Ranges

  • Adults


  • All


  • Other

Project Service Type

  • Awareness
  • Community Outreach / Community Engagement
  • Diagnosis
  • Disease Treatment / Risk Treatment
  • Prevention
  • Screening / Early Detection

Project Content Area

  • Breast
  • Cancer
  • Cervical
  • Colorectal

Project/Program Care Team Target Population

  • Other

Counties Served

  • Allegheny
  • Armstrong
  • Beaver
  • Bedford
  • Blair
  • Bradford
  • Butler
  • Cambria
  • Cameron
  • Carbon
  • Centre
  • Clarion
  • Clearfield
  • Clinton
  • Columbia
  • Crawford
  • Elk
  • Erie
  • Fayette
  • Forest
  • Fulton
  • Greene
  • Huntingdon
  • Indiana
  • Jefferson
  • Juniata
  • Lackawanna
  • Lawrence
  • Luzerne
  • Lycoming
  • McKean
  • Mercer
  • Mifflin
  • Monroe
  • Montour
  • Northumberland
  • Perry
  • Pike
  • Potter
  • Schuylkill
  • Snyder
  • Somerset
  • Sullivan
  • Susquehanna
  • Tioga
  • Union
  • Warren
  • Washington
  • Wayne
  • Westmoreland
  • Wyoming

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