Does peer support help people with mental illness? Or is it more likely to hurt others?
Is it appropriate that the U.S. federal government fund peer-support programs that try and help people with mental illness? Or should they focus exclusively on “evidence-based treatments” (EBTs) to the exclusion of all else?
It’s a complicated question, and the answer isn’t black and white.
In all of history, peer support is the oldest kind of treatment for mental illness. Long before medicine or researchers “discovered” mental illness in the late 19th century, people who had concerns with depression, bipolar disorder, or anxiety turned to the ones they most trusted for help — family, friends, the clergy, and yes, others who suffered similarly.
Such shared experiences were how people coped with their mental illness well into the 20th century. There were few drugs to help such people, and others who didn’t have a mental illness rarely understood the person with one. It’s no wonder people with mental illness found peer support one of their largest beneficial treatments.
With the growth of the Internet in the 1990s, suddenly peer-support was available to the masses like never before. You could join an online peer support group (like the ones we run on Psych Central) and find help from others who shared their own experiences and stories. People give advice, share what worked for them, and help others in their own journeys in recovery.
But most peer programs are still done locally, because there’s nothing quite like face-to-face time with someone else who’s “been there.” Such programs are, by and large, a boon to those who enroll in them.
Should Peer Programs Be Funded by the Government?
The government, primarily through the Substance Abuse and Mental Health Services Administration (SAMHSA), funds many of these kinds of mental health peer programs throughout the country. Natasha Tracy, a blogger with bipolar disorder, doesn’t like this funding because she believes it takes money away from evidence-based treatment programs for individuals in need:
So when I have a choice between a floridly psychotic person talking to a “peer” or actually getting treatment, I’m going to pick treatment 10 times out of 10, and when I think about where our limited dollars should be going, I’m going to pick actual treatment 10 times out of 10, too.
Unfortunately, there’s no evidence that SAMHSA funds peer programs at the expense of treatment programs.1 When SAMHSA has a bucket of money to allocate to peer programs, they’re often restricted from moving that money around to other programs or initiatives. Government budgeting is a mystical art more than simple accounting and it is rarely as simple as “Hey, why don’t they use all this money from over here?”2
Is There Research Support For Peer Services?
Self-help programs and peer support services have a vast, rich research base that goes back decades. Tracy cites two very good meta-analyses that show mixed support for the evidence base behind peer support, which she then uses to argue against government funding. It’s a good argument, if you believe that everything the government funds should first go through a vetting process.
But honestly, research data has never been a qualification for government funding. Of anything. Ever. Maybe it should be.3 Since it’s not the standard today that the government holds itself to for any other funding, I’m not sure it’s the proper yardstick on which to judge the usefulness or value of such programs.
In fact, I believe that holding mental illness to a higher standard than the rest of government (I’m looking at you agriculture and military spending!) is discriminatory and prejudiced against those with mental illness. It’s just another way people try and hold mental illness treatment to a higher standard than everything else around it. (Just as an aside, do you know how much the government funds cancer trials based upon experimental drugs or agents with very little research data — with sometimes just hypothetical beliefs about how they will work — to back their further study?) So if we’re going to suddenly hold mental health funding to a new gold standard, it’s a standard that has to be equally enforced across all of the federal government. Otherwise, folks are just once again stigmatizing — and discriminating against — those with mental illness.
But Listening to Your Peers Could Be Dangerous!
The component of Tracy’s essay which compelled me to write this, however, was the section she wrote entitled, “Are There Dangers to Peer-Delivered Services?” Conveniently leaving research data behind, Tracy devolves into a hypothetical story of harm where a person is given advice from a peer that, “I went on X drug and it changed my life.” Suddenly, the person listening becomes a mindless zombie, taking this peer’s advice directly to heart, taking the drug (I’m not sure how the person got the drug without a prescription, but that’s another issue), and apparently suffering dire consequences.
Or, in another hypothetical, the person is encouraged to dump their meds by their peer:
Another example might be a person that is dealing with psychosis and a peer that says, “Don’t you know that voices are just part of your subconscious and should be dealt with in therapy and not through medication?”
I’ve heard this story before. Countless times. Starting in 1993 when I was first engaged in online peer support groups, doling out and listening to advice on a variety of mental health concerns on Usenet, and again in 1995, when I began doing so on the web. Colleagues would come up to me and say, “Hey, isn’t it dangerous to have online self-help support groups online? What if people share some kind of wacky, dangerous advice? What’s to stop them from hurting others with outrageous or ill-advised counsel?”
Absolutely nothing. Except the same thing we all share — common sense. I’ve never met the person who takes another person’s advice blindly, without talking first to others they trust. I’ve never met someone who took a prescription medication based upon the advice of another, without first getting a prescription for that drug and talking to their doctor first.
Yes, people stop taking their medications. And sometimes, that could result in harmful consequences for the patient. But that is as much a person’s right as it is for them to enter into treatment in the first place. Who are we to judge how or when they exercise the right to discontinue medication?
Where’s the research data demonstrating that — beyond the scare stories — there’s evidence that peer support services are dangerous? I searched and searched and couldn’t find a single study.4,5 In fact, in the 23 years I’ve been studying the intersection of mental health and technology, I’ve never actually heard of any corroborative, first-person account of someone being harmed by health information they found online. It’s an overblown and, as far as I can determine, completely unsubstantiated fear — both online and in person.
I believe — and history has shown — that peer support is a valuable component of the complete, holistic effort that goes into helping a person recover from or live with mental illness (see the References for a partial list). There’s good research to demonstrate it has a small but positive effect on people.
But more convincing to me than any research are the hundreds of thousands of people who’ve been helped by such programs. Should government continue to fund them? Absolutely, unless the government raises the standard for funding on all of its programs used to help people in a variety of fields and industries. We should not discriminate against people with mental illness, holding their programs to a higher standard, just because it’s easy or convenient for us to do so.
Read the full blog entry: We Shouldn’t Fund Peer Support-Based Initiatives for Mental Illness
Cook et al. (2012). Results of a randomized controlled trial of mental illness self-management using Wellness Recovery Action Planning. Schizophr Bulletin, 38, 881-91. doi: 10.1093/schbul/sbr012.
Cook et al. (2012). Randomized controlled trial of peer-led recovery education using Building Recovery of Individual Dreams and Goals through Education and Support (BRIDGES). Schizophr Res., 136, 36-42. doi: 10.1016/j.schres.2011.10.016.
Fuhr et al. (2014). Effectiveness of peer-delivered interventions for severe mental illness and depression on clinical and psychosocial outcomes: a systematic review and meta-analysis. Soc Psychiatry Psychiatr Epidemiol, 49, 1691-702. doi: 10.1007/s00127-014-0857-5.
Pitt et al. (2013). Consumer-providers of care for adult clients of statutory mental health services. Cochrane Database Syst Rev. 2013 Mar 28;3:CD004807. doi: 10.1002/14651858.CD004807.pub2. (Cited in a footnote.)
Proudfoot et al. (2012). Effects of adjunctive peer support on perceptions of illness control and understanding in an online psychoeducation program for bipolar disorder: a randomised controlled trial. J Affect Disord, 142, 98-105. doi: 10.1016/j.jad.2012.04.007.
Sledge et al. (2011). Effectiveness of peer support in reducing readmissions of persons with multiple psychiatric hospitalizations. Psychiatr Services, 62, 541-4. doi: 10.1176/appi.ps.62.5.541.
van Gestel-Timmermans et al. (2012). Effects of a peer-run course on recovery from serious mental illness: a randomized controlled trial. Psychiatr Services, 63, 54-60. doi: 10.1176/appi.ps.201000450.
van Ginneken et al. (2013). Non-specialist health worker interventions for the care of mental, neurological and substance-abuse disorders in low- and middle-income countries. Cochrane Database Syst Rev. 2013 Nov 19;11:CD009149. doi: 10.1002/14651858.CD009149.pub2.
- Government budgets rarely act as straight-forward like your or my budget. [↩]
- The answer is that usually Congress — or a specific Congressperson — has tied that money to specific programs or initiatives that the agency has little say or oversight of. [↩]
- Imagine if we held the military to this same standard? Half of the military-industrial complex would be out of a job tomorrow! [↩]
- Which demonstrates the danger of using research to make a point. Use it consistently, or don’t bother with it at all… [↩]
- I did find a mention of harm analysis in Pitt et al. 2013: “There is no evidence of harm associated with involving consumer-providers in mental health teams.” This suggests that peers don’t harm the treatment process when involved as a treatment team member. However, this same review did not find much support for their systematic use on treatment teams either. [↩]