Integration of Psychology and Medicine in Cancer Patient Experience: The Wellness Community Experience

Harold H. Benjamin, PhD and Mitch Golant, PhD
Ultima Vez Modificado: 25 de mayo del 1997

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Presented at the XXVI International Congress of Psychology
Montreal, QC, Canada - August 16 - 21, 1996

Abstract:

The Wellness Community is a free, multi-dimensional, nonresidential psychos ocial program for cancer patients and their families in support of and integrated with conventional medical treatment. 25,000 participants have attended program since its ince ption in 1982. Currently, 25OC00 participants attend weekly support groups and other educational and social support meetings at 16 Communitys nationwide. The heart of the program is the Patient Active Concept which states that if cancer patients participate in their fight for recovery, along with their physicians, they will improve the quality of their lives and may enhance the possibility of recovery. Patient Active Concept dispels the myth that cancer patients must be passive recipients of medical care; it is a shift in attitude from being passive to being active. 

In the current climate of healthcare reform, TWC provides a much needed and unique model, developed and tested since 1982, of the relationship between psycholog y and medicine.

This presentation will describe the program which is organized around the Patient Active Concept , which will be followed by discussions of the preliminary results of The Wellness Community Participant Satisfaction Questionnaire. 

This questionnaire was developed by Harold H. Benjamin, Ph.D. and Mitch Golant, Ph.D., in consultation with professional healthcare researchers to assess the perceived impact of participation in The Wellness Community on the lives and attitudes of its participants. The questionnaire was distributed to 909 participants at twelve Wellness Communities nationwide, and 480 (53%) from ten Communities were compl eted and returned in time to be included in this preliminary review.

The initial results, described here, can be grouped into five categories or descriptive areas: 

  1. Who participates in The Wellness Community (demographic information)?

  2. How do they perceive and utilize standard medical care?

  3. What is their level of involvement in TWC

  4. Why do participants first come to TWC

  5. What is the perceived impact of participation in TWC on the physical, emotional and interpersonal well-being of participants?

PURPOSE:

The Wellness Community helps cancer patients fight for recovery along with their physicians and other healthcare professionals in the hope that their effort s will have a positive effect on the course of the illness. It is not a hospice or a place where cancer patients come to learn to die or adapt their lives to cancer. Through a growing network of facilities throughout the United States, The Wellness Community provides its unique physician approved support , ". . . because we want as many cancer patients as possible to recover," says Harold H. Benjamin, Ph.D., Founder and Pre sident. Current studies by some of the country's top medical researchers now confirm what The Wellness Community and Dr. Benjamin have been saying since 1982, "Cancer patients who participate in their fight for recovery in support groups will probably improve their quality of life and may affect the course of the illness." Dr. Benjamin calls the principles upon which The Wellness Community is based the Patient Active Concept.

WHAT IS THE PATIENT ACTIVE CONCEPT?

The Patient Active Concept combines the Will of the Patient with the Skills of the Physician in the fight for recovery. The Patient Active Concept is:

a series of psychological and emotional guidelines cancer patients can use in their fight for recovery designed to help cancer patients fight for their recovery along with their physicians and other healthcare professionals integrated with and in support of conventional medical treatment The Patient Active Concept dispels the myth that the patient must be passive. The decision to make an effort to fight the disease by utilizing the methods of The Wellness Community program is a shift in attitude from being passive to being active. The Wellness Community Patient Active Concept is a set of guidelines based upon the scientific research findings that if cancer patients participate in their fight for recovery along with their physicia ns or other healthcare professionals, rather than being helpless, hopeless, passive victims of the disease, they will improve the quality of their lives and may enhance the possibility of their recovery.

DESCRIPTION: Since opening in 1982, The Wellness Community has provided psychological and social support at no charge to more than 25,00 0 cancer patients and their families. It now serves over 2,500 participants each week and is still growing dramatically. With operating facilities in 16 cities throughout the United States, The Wellness Community is by far the largest organization in the world devoted solely to the psychosocial support of cancer patients. The Wellness Community is the program attended by Gilda Radner about which she wrote in her book, "It's Always Something". Norman Cousins was the Honorary Chairman of the Board of Directors until his death.

IN SUPPORT OF TRADITIONAL MEDICINE:

The program is in support of conventional medical treatment. It is not an alternative. It has earned the approval of physicians throughout the United States, more than 350 of whom are members of The Wellness Community Professional Advisory Boards, including

  • Herbert Benson, M.D., Chief of Behavioral Medicine and President of the Mind/Body Medical Institute of New England Deaconess Hospital;

  • Armando E. Giuliano, M.D., Director, Eisenberg-Keefer Breast Center, St. John's Hospital;

  • John Glick, M.D., Director, Univ. of Pennsylvania Cancer Center;

  • Jimmie Holland, M.D., Chief of Psychiatry at Memorial Sloan-Kettering Hospital;

  • Susan Love, M.D., Director, UCLA Breast Center;

  • Donald Morton, M.D., Director of the John Wayne Cancer Institute at St. John's Hospital;

  • Alan Solomon, M.D., Head of Human Immunology & Cancer Program at the Univ. of Tennessee;

  • George Freeman Solomon, M.D., Professor of Psychiatry &a mp; Biobehavioral Sciences, UCLA; and

  • Richard Steckel, M.D., Past-Director, Jonsson Comprehensive Cancer Center, UCLA.

Research From Psychology and Medicine validating THE PATIENT ACTIVE CONCEPT:

There are excellent reasons to participate in making this shift from a passive patient to a "Patient Active".

According to most oncologists, the immune system is the first line of defense against cancer. Research in the field of psychoneuroimmunology (PNI) by Hans Selye, M.D., and others, indicates that long-term unremitting stress depresses th e immune system, and we are just learning that positive emotions enhance the power of the immune system. The Wellness Community program provides a methodology designed to help cancer patients examine and perhaps reduce long term stressors. We provide activities designed to foster positive emotions.

Another body of research by Suzanne Kobasa, Ph.D., Martin Seligman, Ph.D., and others, indicates the three most significant psychosocial stressors cancer patients face are unwanted aloneness, loss of control, and loss of hope. The commu nity aspect of The Wellness Community provides the opportunity for people to come together to exchange information and share feelings, thereby combating unwanted aloneness. The program is designed to help cancer patients become active participants in their fight for recovery, along with their physicians and other cancer patients. Active participation provides an avenue whereby participants may combat loss of control and los s of hope. The Wellness Community's Participant Satisfaction Questionnaire supports recent research by David Spiegel, M.D., and Fawzy Fawzy, M.D., that joining a ca ncer support group positively improves survivorship and quality of life.

 When cancer patients actively participate in the fight for recovery, they take steps to consciously change the impact of major stressors in their lives. The Wellness Community program is uniquely designed, based upon the above research findings, to help cancer patients actively participate. We are hopeful that this participation will have a positive effect on the immune system. Therefore, through co nscious application of the Patient Active Concept, there is reason to believe that cancer patients will affect the quality of their lives, and reason to hope that they will also affect the course of their illness.


METHODOLOGY: HOW THE WELLNESS COMMUNITY PROGRAM APPLIES THIS RESEARCH

TWC program incorporates the above research and the methods of psychosocial support. The Wellness Community is a non-residential program, providing many methods of psychosocial support recommended by conventional oncologists and psychologists that cancer patients can use in order to become a "Patient Active" in their fight for recovery. All groups are facilitated by licensed psychotherapists specially trained in The Wellness Community's unique methods of oncological psychosocial support.

These services, which are completely free of charge, include: participant and family groups facilitated by licensed psychotherapists specially trained by The Wellness Community -- National Training Center Faculty in providing oncological psychosocial support; workshops, lectures, and seminars conducted by physicians and other professionals that provide information and education useful for people with cancer; relaxation and visualization workshops designed to reduce stress by triggering the "relaxation response"; and social events and parties where people with cancer and their families learn to fight for their recovery while they go about living their lives.

TRAINING

All groups are facilitated by licensed psychotherapists who have been specially trained in oncological psychosocial support at TWC-National Training Center. Training in program philosophy and methodology is rigorous and requires a shift in thinking for the clinician from the values of traditional psychotherapy.

The training includes: studying the specially developed TWC Program Manual watching video tapes that teach key elements of TWC philosophy and its application to groups, reading relevant research studies and books, attending regional and national conferences and local retreats that provide education and training in the latest cancer support methods, int erning in cancer support groups, and participating in weekly individual and group supervision with the faculty of the TWC National Training Center.

The "Patient Active Concept" is at the heart of TWC philosophy. We address psychological issues and coping styles with the purpose of improving quality of life, thereby strengthening the immune system, and hopefully affecting the course of the illness. The groups are facilitated in a manner that emphasizes the autonomy and experti se of the participant rather than the therapist. Our goal is that the cancer patient may regain and maintain as much control over his or her life as possible. Participants at TWC are encouraged to rely upon one another for support, camaraderie, and hope as they fight for recovery. The sense of community and group esprit are foremost. The clinician facilitates an optimal environment for addressing psychological issues most pressing for cancer patients: unwanted aloneness, loss of control, loss of hope.

Most importantly, trainees learn that The Wellness Community is based upon a TRAINING community model of psychosocial support. All activities--workshops, lectures, and social events - - take place in a home-like setting where cancer patients can participate together in hope, learning, and friendship in order to fight for their recovery.


Public Acknowledgement:

The program has been acknowledged at the Metropolitan Life's Wonder of Life Pavilion at Disney's Epcot Center as a significant development in the evolution of health care. The Wall Street Journal has reported that major corporations support The Wellness Community in the hope that if their employees use The Wellness Community methods they will "return to work earlier and in better mental shape. "The American Medical Association News" has referred to The Wellness Community as, ". . . one of the best known independent support groups serving cancer patients."


Conclusions:

Although the generalizability of these findings is limited to the population of participants who completed the Satisfaction Questionnaire and there was not a control group, there are several conclusions indicating The Wellness Community TWC integration of psychology and medicine:

Participants who utilize TWC pursue conventional medical treatment (98%) a nd; their physicians know they are attending TWC (87%). Moreover, 50% of participants join TWC in order to learn how to be more of a partner with their doctors.

Participants join in order to be with others who share the same problems and can understand the difficulties of cancer as well as fight for recovery (95%).

Participants join TWC not because they are dissatisfied with information they are; receiving elsewhere or that there is no place else to turn.

Although there are readily available sources of information and support, participants find something uniquely helpful about sharing a common problem in ;the focused support group format at TWC.

Less than 10% of the respondents indicated that their physical quality of life as measured by activity, pain, sexuality, and genera! physical well-bei ng had declined; since attending TWC.

Eighty-three percent rated their overall quality of life as having improved since attending TWC.

The vast majority of respondents said that family and friends know about; (98%) and support (90%) their participation at TWC.

Nearly one-third of the 480 who responded said that their significant other also participated at TWC, and 72% indicated that their relationship had been helped.

Finally, we look forward to investigating this data further by statistical analysis, re-administering the questionnaire to new participants, modifying and adding quality-of-life questions, identifying and assessing effective methods of outreach to underserved populations, and comparing results from individual facilities as a way of monitoring quality assurance around the country.



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