Consumer Perspectives: The Right Research

This article is part of a quarterly series giving voice to the perspectives of individuals with lived experiences as they share their opinions on a particular topic. The authors of this column facilitated a focus group of their peers to inform this writing. The authors are served by Services for the UnderServed (S:US) a New York City-based nonprofit that is committed to giving every New Yorker the tools they can use to lead a life of purpose.

Among the eleven of us who gathered together to discuss the topic of research in behavioral health from our perspectives, a few common experiences were shared. Our group included individuals of many different backgrounds, but most of us had been impacted by substance use addiction and mental illness. Most of us are currently living in an S:US residential treatment program or supported housing. While our understandings and involvements with research have varied, some telling themes emerged from our discussion about this topic.

A few of us shared that we had been involved in studies of various kinds – from sleep studies, to obesity studies, to smoking studies, to those that went further into our substance use and mental health histories. While some of us had heard of behavioral health research studies, most of us had not participated, and some of us were not aware that there was research into behavioral health, or what that even looked like. One of us recently participated in an NYU study meant to prepare people for outpatient treatment, which delved deeper into their family history of mental illness and substance use by exploring areas that were not discussed during standard counseling.

For those of us that had participated in research we had been motivated to participate as supplements to our own treatment, because we felt it would be beneficial to our own recovery and stability. As one of us stated, “I figured out that I couldn’t do it by myself, and I was putting myself in a place where I could have people around me that shared the same issues and get options from them that I didn’t already explore.” And, from our discussion, it seems that participation in research can provide benefits in addition to any positive outcomes of the studies themselves. One of us stated that participation, “was informative. It made me think outside of the box, provided me with more resources and options. Even if I didn’t feel that what they provided to me was what I needed, they always provided referrals so I could seek it elsewhere if I needed help.”

Even for those of us who have never participated in formal research studies ourselves, our discussion uncovered the ways that research, particularly in the field of substance use treatment, can potentially have real impacts on how services are delivered. This was most evident to those of us who have received services over several decades and have witnessed changes in how substance use treatment is delivered. One of us currently in substance use treatment pointed out how, years ago, a program they participated in had drinking privileges at the end of the week, permitted because at the time alcohol was not considered as harmful as the other drugs being used. But research and treatment experiences of people like us have since changed this approach. Treatment programs at that time also seemed to be harsher, based on the idea that, “If we knock you down to the ground, then we can build you up,” a contrast to the more support-based, person-centered services that are more common today, thanks again to changes in how service providers and researchers understand recovery. These shifts in service and treatment models are presumably the result of research and study over the last few decades, and have a profound impact on the lives of those in recovery.

As our discussion moved to this topic – the tangible impact that research can have on the way services are delivered – we began discussing areas we are curious about or feel would be helpful in our recovery. Although our conversation often focused on service needs as opposed to specific research areas, our discussion revealed that it is important to many of us that researchers listen and acknowledge treatment needs that are important to us. One area that had nearly unanimous favor among us was the idea of including a family intervention model in our treatment Recognizing that everyone’s family relationships differ, many of us expressed a desire to have some kind of involvement of family or familial relationships in recovery, as a way to rebuild relationships that may have been strained due to substance use or mental illness, and to (as one of us put it), create “less separation and more unity to help with healing.”

Another topic that emerged as an area of interest in the group was the question of why there seem to be fewer women in residential treatment than in previous years. The difference has been noticeable to those of us who have returned to residential treatment after being previously enrolled a few years prior. Many of us appreciate the benefits of co-ed programs, and wonder why there seems to be lower participation for women and if this is a trend that also exists outside of our particular S:US program. Has there been research into the pros and cons of gender segregated or co-ed residential treatment? Others expressed wanting to know whether one’s childhood environment, neighborhood, and household had an impact on recovery. Another topic raised was whether people who have mental illness and are homeless may stay longer in housing if they have the ability to interview their roommates prior to moving in with them. We are impacted by these and many other areas of treatment services, so we feel that service providers should share their knowledge of the research that informs the services we receive.

Ultimately, our discussion group came to appreciate the value of research, and even those of us who had never participated in research studies grew more open to the idea. We did identify several factors that would impact our decision to participate, however. Financial compensation was mentioned as a motivating factor for participation. Many of us also would prefer to know how research studies are monitored. Would we have quick access to help if something were to go wrong over the course of the study? Are there known side effects of whatever experimental treatment or model we would be participating in? Could it have a negative impact on our recovery? Having histories of substance use, many of us expressed hesitation about participating in any studies that would involve experimental medications or substances. Also, information about existing research studies doesn’t seem readily available, or is not usually brought to our attention. Perhaps researchers could do more to seek us out and maybe our providers could let us know about local studies that may be important to us.

Toward the end of our discussion, another point of agreement emerged: we see the value in research and the information found in research studies if the end result could lead to quality services for those impacted by substance use and mental illness. As one of us stated, “I would hope it could help somebody—if I could just help one person not go through what I’ve put myself through.”

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