With this Q&A, MIA is introducing a new feature: brief interviews with both professionals and users of the mental health system on topics of special interest to parents and families. They are designed to provide a closer look at new research, trends, and people.
Our first interview is with Nev Jones, Ph.D., lead author of a paper recently published in the journal Social Psychiatry and Psychiatric Epidemiology. It is titled “Investigating the Impact of Involuntary Psychiatric Hospitalization Youth and Young Adult Trust and Help-Seeking in Pathways to Care,” which is summarized in a March 18 article in our Research News section.
One of the study’s major findings: Youth who were hospitalized against their will for mental health reasons experienced the treatment as a form of punishment, and many said they were less likely to trust mental health care providers. What might these findings mean for parents?
Nev Jones (at left) is an assistant professor in the Department of Psychiatry at the University of South Florida, and a faculty affiliate of the Florida Mental Health Institute. Her major areas of focus include youth/young adult pathways to and through care, the social and structural determinants of recovery/disability, and participatory approaches to research and systems redesign. She also has lived experience of psychosis.
Q: Your study looked at the impact of involuntary psychiatric hospitalization on youth and young adults. You interviewed an ethnically diverse group of 40 young people 16-27 (mostly female) who had been in forced treatment at least once about their experiences and its impact, both during hospitalization and after release. What were you looking to discover and why?
A: Already when I’d moved to Florida in 2017, the use of “Baker Acts” (or involuntary mental health emergency holds), particularly among youth, had been the subject of numerous news stories and sometimes scathing investigative reports. And it’s not only journalists who have been paying attention: a few years ago the state commissioned a special report on the use of Baker Acts among youth. In the past few years, concerns have led to a long series of different proposed legislative reforms, some originating from advocates, some from legislators and their staffs. Even so, when I started work on this project, there were essentially no existing studies focused on the perspectives of youth themselves, with respect to either experiences in Baker Act (inpatient) facilities or the impact of Baker Acts on subsequent engagement with mental health providers. So that’s what we set out to do.
Q: Let’s talk about your key findings. About 2/3 to 3/4 of the subjects said their experience was negative, and harmed their sense of trust. What were the themes that emerged?
A: Overall, I would say the single most pervasive theme revolved around participants’ sense of their involuntary hospitalization experiences as punitive rather than therapeutic—observations grounded in the frequent involvement of police officers in initiation and transport, inpatient practices such as strip searches and the confiscation of personal items, the overall sense that facilities were more jail-like than therapeutic, and of course the attitudes of hospital staff.
A subset of participants told us how the first thing they learned from other patients, once admitted, was to “lie” to staff about any ongoing suicidal ideation or mental health challenges and “put on a happy face” in order to be released. For balance, it’s worth adding that not all participants felt this way—a small minority actually had positive experiences of their hospital stays, most often in cases in which they had had access to therapy and groups that they actually found to be helpful, and positive (rather than punitive or controlling) interactions with staff.
Interestingly, not a single participant in our sample indicated that they were opposed to involuntary hospitalization in principle. As one put it, it was instead “the execution” that was perceived as the real problem.
Q: How did that loss of trust play out during and after hospitalization?
A: For the majority of participants, experiences of involuntary hospitalization [IH] eroded trust in providers following discharge. Interestingly, however, in many cases distrust did not play out in the form of outright disengagement. Instead, many of the participants continued to meet with mental health providers (therapists or prescribers). However, a substantial proportion shared that they no longer felt comfortable disclosing suicidal thoughts or plans, even with providers with whom they otherwise felt connected.
This is, of course, extremely concerning, and while a study like this does not allow us to generalize, understanding whether these impacts would hold across larger, ideally representative samples and determining the proportion of young people experiencing these kinds of impacts is pressing. Likewise, we really need to develop a better understanding of the extent to which distrust persists over time, and the factors that may contribute.
It’s also worth noting that a not-insignificant number of participants also described what we termed positive “indirect” impacts – most often the sense that only after (and because of) the involuntary hospitalization, family members, friends or significant others had finally started to take their challenges seriously. It almost goes without saying, of course, that this finding really reflects problems (attitudes toward mental health/distress) that are not in fact intrinsically tied to hospitalization at all, and that we as a society clearly need to address in other ways.
There were also participants who reported that their IH experience served as a wake-up call, or helped shift their perspective on their own challenges in a positive way. For example, for some, seeing other youth who were experiencing more severe poverty or disadvantage helped some participants appreciate what they did have, or what their own parents were like in contrast to other parents they might have heard about.
Q: What are the implications of your findings on the likely trajectory of how a youth engages with the mental health system after hospitalization?
A: This is where I’d again say that we really need more research—our work highlights the potential stakes, but we badly need data from much large, ideally representative, samples. That is, we need to understand the scope of the potential problem, and the range of ways in which IH may be impacting youth over the longer term.
Q: What are the take-homes of your research for parents and family members? How can they use the information in this study to help them make decisions for, and/or with, a child who is experiencing first-episode psychosis or another mental health crisis such as suicidality?
A: A lot of mental health anti-stigma or wellness campaigns push the message that “help is out there.” I think the fallacy in this, and the underlying problem here, is that high-quality mental health supports are in fact extremely difficult to identify and access. And I do want to stress quality, because the majority of the participants in our sample had received some form of therapy prior to their initial IH, but experienced it as “ineffective” and in extreme cases, harmful. (For example, several LGBTQ participants described treatment that bordered on conversion therapy.)
Further, while it’s easy to forget this as an experienced advocate, clinician or researcher, most parents have no prior background in mental health treatment or services, don’t know how to navigate insurance, don’t know where to begin. In a crisis, there’s rarely the time to engage in extensive searches or consultation, so not knowing what else to do, many end up calling 911 or taking their child to the ER.
Other parents can of course be an invaluable source of information, and in some cities or countries there are genuinely helpful crisis centers (that do everything they can to *avoid* involuntary interventions) or warmlines. But this is far from the case everywhere. When it comes to support for first-episode psychosis, the same holds—in some places, even the best options would fall far, far short of what would be considered even a basic standard of care. So I don’t want to be discouraging, but also don’t want to shy away from the fact that we need major structural policy reform in this country. Until we do, I think we’ll see the same patterns of over-reliance on acute and crisis care because the community options that should be there just aren’t there.
Q: Is it always up to families, or do authorities play an outsized role in involuntary hospitalization? If so, what can parents who are against their kids being involuntarily admitted do to help them have a better experience, during and after admission?
A: First of all, regardless of the age of their clients, all providers should explain the exact circumstances under which they would or wouldn’t initiate an involuntary hold. (State involuntary treatment laws vary considerably, so this will often depend on the category of provider and the state in which they’re located.) In our study, both the youth and parents we interviewed*, indicated that they often felt blindsided by provider or school decisions to initiate an involuntary psychiatric hold. And many did not even know what this (in Florida context, a “Baker Act”) was. Having these conservations at the start of treatment is obviously a good idea. During [a child’s] inpatient stay, visiting regularly (or at least as much as the child/family member wants) is always a good idea and, to the extent allowed, bringing clothes, games or books from home. Above all, sending a message of unconditional love and support.
Once a child (or young adult) is discharged, my advice would be to provide as many opportunities as one can to allow the child/young person to discuss and process their experiences. And do so in a validating, affirmative way. (I.E., don’t downplay feelings of anger or resentment if that’s how the child is feeling.) If they are interested in further therapy or other mental health services, make sure that’s comfortable with and feel they can fully trust the provider(s) they’re working with. If you have to “shop around,” it’s absolutely worth it.
Q: How does this research fit into your larger research and social justice agenda?
A: I would say that a lot of, if not all of, my research has been dedicated to amplifying the extent to which we hear from and learn from the experiences of key stakeholders—clients and families—and take stock of the complexities involved in navigating issues of access, quality of services, power dynamics in the context of services, and ultimately outcomes.
My concern with a lot of the literature out there is that it dramatically over-simplifies the picture of what’s going on and, by extension, what needs to change. Of particular concern are practices which, however normalized they may currently be, in fact negatively impact or risk negatively impacting service users/recipients. And it’s all the more concerning when this ( interventions that are potentially harmful) happens at the beginning of young people’s engagement with mental health services. And even more so when these harms (or the interventions in question) could relatively easily be prevented or were never appropriate or warranted to begin with.
Q: How does your lived experience with psychosis and the mental health system inform your goals in studying this topic and in your advocacy?
A: Honestly, when I’m conducting research, I’m above all trying to listen to and learn from participants and their experiences, in all their richness and complexity. But my own experiences, I’d argue, certainly orient and attune me to these narratives in particular ways—[for example] an awareness of the degree to which real and perceived power imbalances structure recipients’ experiences of services, as do diverse social, cultural and structural conditions, and of the complexities of the impacts that relationships with providers can have.
I’m also acutely aware of the many disjuncture’s between the views and priorities of different stakeholders: service recipients, family, providers, administrators, researchers. And sometimes these differences are articulated, sometimes they’re not – sometimes service users are experiencing things in a completely different way, but have neither the opportunities nor the power to more publicly or visibly voice them.
* * *
* Jones’ parent interviews will be reported in a future publication.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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