If you’ve ever suffered a chronic illness, or loved someone who has, you probably wondered what caused it. And the way you thought about the origins of the problem—based on past experiences and choices made—probably differed from the way your physician approached it, with laser focus on the presenting symptoms.
But researchers have now demonstrated the value of eliciting the patient’s perception of a physical condition, also known as the “illness narrative,” as a valuable tool for improving health management. Over the past decade, Michelle Munson, associate professor at the Silver School of Social Work, has been examining the narratives of young adults with mental health challenges. She and her colleagues, principally Sarah Narendorf of the University of Houston, have found that improving mental health for young people will require serious respect and consideration for how each individual makes sense of their condition and its origins.
Questions to ask a young adult include: What do you think caused your condition? How do you think it is best managed? Do you think professional treatment can help? What do you perceive would be the consequences of not getting help? “The individual’s interpretation of their mental health is something that patients and practitioners need to uncover—together—as part of a therapeutic relationship,” explains Munson. “This is critical to keeping young adults invested in their own healing.”
Like much of Munson’s state- and NIH-supported work, these empirical studies focus on marginalized young adults defined by the Institute of Medicine as navigating added challenges in their transition to adulthood, including poverty, reliance on safety-net systems of care, disabilities, and young parenthood. As the data suggest, how young adults make sense of their symptoms, how they feel about them, and their perceptions of help sources all strongly influence their engagement (or lack thereof) with treatment, and how well they will continue to take care of themselves. For now, Munson and Narendorf, along with their colleagues, have proposed in a newly published article in the American Journal of Orthopsychiatry, and another forthcoming in the Journal of the Society for Social Work and Research, that there can be a transformation in mental health if we can train providers to closely consider these narratives.
NYU News spoke with them about their ongoing research.
The concept of “illness narratives” is rooted in the study of chronic physical illnesses. How does its use differ when it comes to treating individuals with mental illness?
Michelle Munson: Illness narratives are primarily rooted in the research of Arthur Kleinman, Rita Charon, Cheryl Mattingly, and other scholars since the mid-1980s. We refer instead to “mental health narratives” since emotional dimensions, such as fear and shame, may be more present in the narrative surrounding the diagnosis of a mental health condition than in the case of physical condition, due to the cultural shame surrounding psychiatric conditions in Western culture. Our studies do show, however, that the concepts from the physical health literature and the mental health literature are quite similar.
The concept of illness narratives is about understanding the perspective of the person experiencing the illness in order to better help them, and this is true whether we are talking about physical illness or mental illness. But, there are particular aspects of mental health that make narratives related to mental health stand out, notably the discrimination associated with having a mental illness, or what some people call stigma. This is an integral component of how someone makes sense of their symptoms and whether they identify with or reject, and how much they identify with or reject, a label such as a diagnosis that they have received.
How do you define “marginalized” youth?
Sarah Narendorf: Our early work looked at youth and young adults served by specific safety net systems of care (for example, child welfare), and young adults who were involved with multiple systems of care as children. As former providers ourselves, we knew that these young adults are rarely involved with one safety net system, as poverty is an important, yet often ignored, underlying factor associated with being involved with these systems of care.
A few years ago, the Institute of Medicine published a report defining marginalized youth which focused on social exclusion from resources. So we follow their lead now with this term. One thing we like about the term “marginalized” rather than the descriptive words we’ve used in the past, like “vulnerable,” is that it highlights the structural causal factors of the problems these young people experience, including being diagnosed with a mental health condition. When you are young, poor, a member of a minority group, and/or aging out of a public system of care, you often are swept to the margins through discrimination and a lack of social supports and resources. The young people in our research studies not only have to manage mental health symptoms, but they also have to navigate the challenges of adulthood with the added stresses of poverty and discrimination. Understanding their narratives is important so we can design services that fit their needs.
The transition to adulthood must be especially complicated for them.
M.M.: Complicated for sure. One important thing to note, however, is that we have found that the transformation, during this time of transition, can be either devastating and filled with loss and pain, or hopeful for finding a new way to live with one’s mental health symptoms. We have found that how the mental health system engages young adults, and communicates with them, influences whether change during this time is positive or negative.
How do young people make sense of their symptoms and treatment experiences once they are living on their own and struggling to support themselves?
S.N.: Very little is known about this. Our papers discuss what is known empirically about the mental health narratives among young adults. Also, if you pay attention to young people in society who are doing well, compared to those who are not, you begin to hear, implicitly, different narratives. And, you also hear what has influenced mental health narratives.
Our current projects are building on these data to train professionals systematically to be a helpful guide for young people in constructing a narrative that works for them. For example, if I am a mental health provider and I meet one young adult who has a firm belief that his depression was caused by poverty, discrimination, and the sexual abuse he survived as a child, I am going to need to work with him differently than I would with another young adult, even one with a similar abuse history whose narrative about the cause of her depression is solidly based around genetics. The point is: how these young people are thinking, and feeling, about the condition matters. In fact, we wonder if it matters as much or even possibly more than authoritatively figuring out what is the true, right, or most valid cause. Both are obviously crucial.
How can this improve the quality of mental health care?
S.N.: In the past, we have had a tendency to rely on experts who assess for symptoms and utilize this information to make a diagnosis, then recommend treatment. But this approach has sometimes failed to recognize that young people also have important knowledge about their own symptoms and health, and critical insights and understandings that can guide the best approach to helping them. A team approach of a professional and young adult working together is clearly the best approach, and we think this will provide high-quality mental health care.
What is your research method?
M.M.: In our recent studies published in the American Journal of Orthopsychiatry and the JSSWR, and a similar one out of Dr. Narendorf’s lab entitled "Psychiatric medication adherence after crisis emergency care in young adults,” we use in-depth, face-to-face interview methods with young adults to learn from them how they experience their mental health. The studies used open-ended questions and extensive probing, but the study interview questions are broad and not based on a particular theory: for example, “How have you experienced your [young adult’s own language for their condition] since turning 18, since becoming more independent?” Then we worked with multiple analysts trained in qualitative methods to read, memo, code, and discuss in multiple iterative meetings the meaning of the data. Because what we have found has been so interesting, we are continuing to pursue this line in our current studies, including “Just Do You,” our current NIMH study, which takes place in Brooklyn and the Bronx. Our goal is to see if the narrative types that emerged in this formative research generalize beyond these studies, and to examine if narratives change over time and see if they are associated with health behaviors.
Where do other researchers, practitioners, and policy makers need to go from here?
M.M.: Well, researchers need to replicate these studies to build credibility in narrative types and understanding if and how a particular narrative impacts a young adult’s decisions. Perhaps more importantly, our team is developing technology-based interventions, in partnership with the Jed Foundation and others, to be used in service settings to help to shape the narratives of young adults who are making sense of their lives and their identities with a relatively new mental health diagnosis.
What is at stake as you see it?
S.N.: A lot is at stake. In both New York and Houston, where we conduct our research, scores of young adults who need help do not get it. While part of the problem is lack of access, poverty, and stressful competing demands, like parenting and education, another large part is that young adults who are marginalized do not feel heard, respected, and helped by professional mental health providers. They do not feel understood. They haven’t for a very long time. If we want to help these young adults, it is on us to learn to help providers come from a place of cultural humility, and listen for their stories, their experiences, their mental health narratives. If we do not, we will continue to fail these young people.