Program development for cancer patients

Through its national dissemination of LIVESTRONG at the YMCA, the Y and the LIVESTRONG Foundation have learned many lessons that have helped strengthen the program model and aid in program expansion. An initial, important lesson was that successful programming requires staff who have a deep understanding and empathy for cancer survivors in their communities.

Although the process of developing and delivering LIVESTRONG at the YMCA has evolved from experimental to more prescriptive, implementation of the program in individual communities and environments requires Ys to be flexible and adaptable to meet the wants, needs, and interests of cancer survivors in their community. To that end, Ys must listen to and learn from cancer survivors, via one-on-one interviews and focus groups, before launching programs and services. This period of discovery not only is foundational to staff awareness but also builds and deepens staff empathy, a key competency for those who will connect and engage with cancer survivors.

A second lesson learned was that Ys must earn credibility with cancer survivors in their communities. Although the YMCA is uniquely suited to provide this program because of its commitment to community outreach and focus on those who need support to gain or regain health, the YMCA has had to establish its credibility as an organization with expertise in cancer survivorship. In a national survey of cancer survivors, the majority believed that a physical activity program at the Y was a good idea, but they wanted to know that it had the backing of their physician or local oncology center and that the instructors were well qualified. Offering the program at no charge was an important factor for often cash-strapped survivors. The Y and the LIVESTRONG Foundation have worked hard to ensure that LIVESTRONG at the YMCA meets these criteria, building active partnerships with local agencies that serve cancer survivors, creating a rigorous staff training process, and providing programs at low or no cost to cancer survivors.

A final lesson learned was that before offering the physical activity program, Ys must ensure that their environments are safe and supportive for cancer survivors. Staff of each participating Y must be sure that its atmosphere supports cancer survivors' physical, social, and emotional needs. This insight has led to a variety of changes in facilities: shortening the distance cancer survivors must travel to get into or through the building; installing handrails in hallways and stairways; providing hand gel sanitizer dispensers throughout the facility; having a "resting" or "support" chair in workout areas and changing areas; providing an area where private conversations can be held; and enlisting members in ensuring facilities are clean and germ-free for cancer survivor participants.

The National Cancer Institute estimates that there are more than 13 million cancer survivors living in the United States today. With 1 in 2 men and 1 in 3 women predicted to be diagnosed with cancer in their lifetimes, the need for services that focus on quality of life during and after treatment is increasingly important. Because current evidence suggests that being physically active following diagnosis may reduce the risk of recurrence of some types of cancer, offering programs that encourage and support survivors in living a physically active lifestyle is increasingly important.

LIVESTRONG at the YMCA is designed for in-treatment or posttreatment cancer survivors. The program is available in more than 226 cities and more than 250 branches. More than 13,000 individuals have completed the LIVESTRONG at the YMCA program, and the LIVESTRONG Foundation and the YMCA of the USA are seeking to extend the program to more facilities. The hope is that cancer survivors will have access to a community-based program that is designed to meet their needs, help them establish a healthy lifestyle that will improve their quality of life, and ultimately reduce the risk of cancer recurrence and the development of a second primary cancer.

Cancer survivors who participate in LIVESTRONG at the YMCA engage in pre- to postprogram functional and quality of life assessments. Functional assessments measure participants' strength, aerobic capacity, balance, and flexibility. Results from a sample 12-week session of LIVESTRONG at the YMCA showed the following:

• 56 percent improvement in leg strength
• 45 percent improvement in upper body strength
• 60 percent improvement in aerobic capacity (treadmill or bicycle ergometer time to fatigue)

A 29-question life assessment asks participants to rate their physical functioning, anxiety, depression, fatigue, sleep disturbance, satisfaction with social role, pain interference, and pain intensity. Quality of life assessment scores have not yet been compiled for evaluation.

Participants also complete a post-program survey. A sample of more than 100 of these surveys showed the following:

• 92 percent agree that they have made progress related to their health and well-being goals as a result of their participation in LIVESTRONG at the YMCA.
• 86 percent agree that they are part of a supportive community at the YMCA (as defined by four measures).
• 92 percent agree that their program leader has the understanding and skills needed to lead a physical activity program for cancer survivors.
• 93 percent plan to continue their health and well-being journey at the YMCA after the end of the program.
• 94 percent are highly likely to recommend LIVESTRONG at the YMCA to a friend or family member.

The physical benefits are great, but the social and emotional aspects of the program seem to be the most meaningful to cancer survivors. The following quotation is an example of the profound impact that LIVESTRONG at the YMCA has had on many cancer survivors' overall well-being:

This class changed my life. When you get the diagnosis, everything is so bleak - and then they tell you that you can't lift more than five pounds, and it is even more depressing. I felt very alone and then I came to the Y. This class is a community for me. I love it and am happy and thankful that I get to do it. I am so privileged to have had it; I believe it saved my life. This class gave me back my life, my sense of self, hope, and camaraderie and made me a stronger me. It improved my life and my mental outlook.

The program had a positive effect not only on cancer survivors but on YMCA staff members as well. One chief operating officer shared this about his involvement with LIVESTRONG at the YMCA:

At times we can become so overwhelmed with balancing budgets, building facilities, developing marketing tools, and managing staff that we forget why we are part of this mission-driven organization. My involvement with LIVESTRONG at the YMCA has allowed me to catch my breath and reconnect with the YMCA mission in a whole new way through the life-changing work that is being done in our YMCAs with cancer survivors.

With YMCAs in more than 10,000 communities across the United States, the potential impact of this program is tremendous. The YMCAs that have engaged in this work describe the experience as game-changing for the YMCA and life-changing for the staff involved. YMCAs are queued up for the chance to invest their own money and six months of their staff time to participate in this program that often transforms the way a YMCA functions and operates.