Summer 2000
The American Psychologist (February 2000) recently ran a lead article on self-help entitled, Who Talks? The Social Psychology of Illness Support Groups by Kathryn P. Davidson, James W. Pennebaker, and Sally S. Dickerson. Using a painstaking and innovative method of meticulously counting group by group, the authors studied participation in health related mutual aid, including online, in four major U.S. cities--over 14,000 groups in all. The purpose of the article is to discuss patterns of participation in illness groups. For example, the authors found that groups for alcohol abuse, AIDS, anorexia and breast cancer have higher rates of membership than those for migrane, hypertension, ulcers or chronic pain. A groundbreaking feature of the article is its call for greater collaboration between the provider and support groups as an effective but underutilized health resource:
Within contemporary health care, support group participation patterns are particularly relevant at this juncture in history given the disparity between the costs of health care and the unmet needs of many patients. The culture of institutional health care is still far from embracing psychological support into health care delivery despite overwhelming empirical justification (p. 216).
An important paper by Greg Meissen, Scott Wituk, Mary L. Warren and Matthew D. Shepherd, Self-Help Groups and Managed Health Care, will appear in the International Journal of Self-Help and Self-Care. The paper documents issues in making self-help groups for illness part of the continuum of treatment by managed care and mental health delivery organizations. These include the concerns of self-help support groups themselves, such as overreferral, turnover and attendance, but also maintaining the autonomy and the intimacy of functioning groups. In addition the needs of health care organizations are addressed, such as effectiveness, cost-effectiveness and patient satisfaction.
The Self-Help Network of Kansas, of which Dr. Meissen is the director, made several efforts to integrate its services with health organizations, with modest success: Two made efforts to include self-help groups into their services. However, health care organizations are not yet aware of the array of groups available to their patients for a wide variety of conditions, and the studies documenting the benefits of attending mutual aid groups:
We found that providers and administrators knew little to nothing about the hundreds of groups available throughout the state or that thousands of people utilized self-help groups. In fact they were quite surprised so many groups existed for their patients. Some thought the organization was already working to include self-help groups in their services…but after a brief introduction to the Self-Help Network they realized that their knowledge and utilization of self-help groups was quite limited.
The authors conclude with suggestions for how to promote greater use of self-help. For example, it behooves self-help clearinghouses and organizations to find points of access to the health system by appealing to HMOs providing mental health services, to the States, a major purchaser for their Medicaid recipients, and to Employee Assistance Programs, which make referrals for addiction and mental health consumers.
The authors believe that it is time to increase the awareness of the "self-help movement" even among members and organizations who believe in the self-help mutual aid approach, but do not seem aware of each another. As I found from reading letters I received while conducting an informal survey of attitudes toward coalition building, many self-helpers are passionately devoted to remaining "anonymous." Some do not want to be in a "movement," which they regard with suspicion. But there were many others who wrote of their desire to belong to a movement larger than their own group. This split in attitude is but one more puzzling facet of the self-help phenomenon with which advocates and organizations will have to deal.
