Self-help mutual aid groups for health-related problems are getting more attention lately. Such groups have long existed for a wide variety of conditions: organizations like GROW for mental health to groups for Parkinson’s, Multiple Sclorosis and other chronic diseases. The online revolution has only increased this trend as the directories of America Online and the American Self-Help Clearinghouse (www.mentalhelp.net/selfhelp) attest. In fact, a self-help mutual aid group exists for every condition identified by the World Health Organization.
With the advent of managed care one might have thought that self-help groups were an integrated part of the health-care system, especially because research has shown group participation to impact health most favorably. Randomized clinical studies in the eighties on metastatized breast cancer by Dr.David Spiegel showed higher rates of cancer survival for group members. And Dr. Dean Ornish’s continuing program for treating heart disease makes extensive use of self-help groups, with surprising results. He wrote:
It would appear that self-help groups and the health system would be a natural fit. Health maintenance organizations with their eye on costs should, it seems, be drawn to the benefits and cost-benefits of self-help groups, most of which are free. In addition these groups soften the coldness of the health system by providing important non-tangibles of caring and personalized experiential information from other patients–reducing the social isolation that comes with illness. Sally Thorne, in her informative book Negotiating Health Care: The Social Context of Chronic Illness (1993), reported that “many of those living with chronic illness felt a burning desire to make contact with others who had encountered similar experiences.” One member said: “We’re from different walks of lifeâ€¦except that we share something really common–we have the same disease”(p. 200).
Hand in hand with the proliferation of self-help groups for illness is a veritable revolution in self care. In a well-publicized study, the Healthwise self care handbook was distributed to communities in Idaho, resulting on average in an 18% drop in emergency room use. Studies showing that self-help groups lessen demand on the health system are still in the works. But a promising paper by Keith Humphreys and Rudolf Moos reports preliminary results showing that 887 patients patients who received treatment emphasizing 12-step ideas and the importance of AA/NA attendance may come to rely on self-help groups and less on professional services, by comparison with a control group of 887 consumers who received non-self-help-oriented treatment.
Despite the promise, successful collaborations between the formal health delivery system and the informal world of self-help members and organizations have been few and far between. There are exceptions, the Puget Sound HMO in Seattle for example, but by and large hospitals and managed care organizations are not aware of the variety of groups available to their patients, do not manage referrals, and are not abreast of the literature on the effectiveness and cost-effectiveness of groups. (In the public consciousness, self-help means Alcoholics Anonymous, NA and other 12-step organizations.) HMOs may also fear liability for the advice given from one patient to another in a mutual aid setting.
Likewise self-help mutual aid groups and leaders are protective of their privacy and autonomy, and may even take a critical stance toward the formal health-care delivery system, doctors and administrators. And where self-help and formal health care overlap, there has been friction as often as cooperation. Thorne reports a mother of a PKU patient as saying: “They don’t want PKU parents talking to each otherâ€¦because we compareâ€¦And at one of our meetings we did have the doctors come out, and it was like they were politicians. When you asked them a question you never got a straight answer.” Thorne continues: “From the perspective of chonically ill individuals and families the same resistance was evident in such decisions as refusing to grant meeting space for support groups, withholding mailing lists on the pretense of patient confidentiality, and even openly criticizing support group leaders” (p. 202).
At bottom there may be a disconnect between these two different cultures of health care, one emphasizing the ‘health’ side and the other the ‘care’ side of the equation. This is where intermediary organizations like the network of self-help clearinghouses can play a role, making hospitals and HMOs aware of the research and the benefits of patient groups, and bridging the gap of trust by offering to refer patients to local groups without demanding that they become part of the formal health system. In this newsletter we report on progress that has been made in bringing these two worlds closer and relay suggestions for making it happen to the benefit of both sides.