Psych NP & Caregiver Share Experiences on the Many Shapes and Sizes of Individualized Schizophrenia Treatment Plans for Adults
This story has been published with permission from the caregiver’s son.
For adults living with schizophrenia, finding the right treatment plan—which is often a comprehensive look at an individual’s approach to their condition, including medication, therapy, and other support services—is not a one-size-fits-all approach.
However, adults living with schizophrenia may stop taking their medication as prescribed, sometimes due to a symptom called anosognosia that impacts the belief that medication is needed. Not taking medication as prescribed or stopping medication without the guidance of a healthcare professional is not unique to schizophrenia and is common across many conditions. For adults living with schizophrenia, this often kickstarts a repetitive cycle in which adults oscillate in and out of adhering to a treatment plan. This may hinder their ability to meet their full potential, which is often made possible when symptoms are appropriately managed.
Though the road from diagnosis to long-term management of schizophrenia can have its ups and downs, successful management is possible.
In fact, for adults living with schizophrenia, their care team is a critical part of long-term symptom management, in addition to the medication they take. The care team often includes family and friends collaborating with health professionals, such as nurse practitioners who often take a holistic approach to care, considering social, environmental, and physical factors when determining how to provide the best possible care for their patients. It’s these relationships that allow adults not just to live with schizophrenia, but to live well.
In a conversation with Katie, caregiver to her adult son living with schizophrenia, and psychiatric mental health nurse practitioner (PMHNP) Emma Mangano, we explore the importance of what a strong care team looks like in the successful management of schizophrenia.
Katie, could you start by sharing with us how your son is doing today?
Katie: Today, my son is 28 years old, in his second year of law school, and living on his own. He was 18 when he had his first psychotic break, which for him, had included delusions. Though it took many years of consulting with different healthcare providers and trying different medication options to help manage his symptoms, he’s now on a long-acting injectable (LAI), which works well for him. Finding the right treatment plan for him has helped him to live a fulfilling and stable life and with his symptoms managed, he is reaching his personal and professional goals.
You’d said it took many years for your son to find a treatment plan that worked for him. Can you tell us about that journey?
Katie: Over the course of several years, my son tried various treatment medications, seeking the right option that would help him best manage his symptoms.
As a nurse myself, when my son was experiencing intense symptoms, I thought to call the mental health service line on the back of my insurance card. Given how my son was in that moment, they advised us to call emergency services and request a crisis intervention officer, a law enforcement officer trained to help a person experiencing a crisis or mental health symptoms. This officer helped mitigate the situation and guide us in the direction of appropriate care. As the years went on, we spoke with school counselors, doctors, therapists, and psychiatrists to seek help, but it was difficult for my son to adhere to a treatment plan, as he was not correctly diagnosed.
The last time he was hospitalized, we had an outpatient care team in place, which included a nurse, peer support specialist, psychiatrist, and therapist. The outpatient care team was in constant collaboration with us, and together we decided upon a medication.
While my son was being treated in the outpatient program, we met other families with adult children who had similar diagnoses, which is how we first learned about LAIs.
When he agreed to the LAI treatment, I called the outpatient care team nurse, who administered the injection that same day. Through these experiences, I realized that my son needed to feel like taking medication was his idea and choice, that he needed to feel autonomy over his condition. It was then I learned that the less I said, the more he did.
Emma, in your experience as a psychiatric nurse practitioner (NP), why is treatment adherence so important? Similarly, what role can a support team play?
Emma: It is not uncommon to hear from patients that they stopped taking their medication because they felt better, or the hallucinations subsided, and they did not appreciate the need to continue treatment. Unfortunately, many of my patients do not have a support network to help them remember to take medication or go to appointments, and we end up seeing them back in crisis. We have to remember that part of the illness is disorganization, which can make it hard to navigate an already complicated healthcare system.
An individualized approach to a treatment plan is very important for an adult living with schizophrenia because all adult patients have different goals, different life experiences, and different lifestyles. Informed, or shared, decision-making is an ongoing process in which providers, families, and patients should be revisiting the initial treatment plan as questions arise or life events occur. Through all of this, we need to respect a patient’s autonomy while still providing evidence-based treatments.
Adherence begins with creating a support network that truly has the client’s health and well-being as a priority, not just symptom relief. Everyone’s support network looks different and is not “one size fits all.” Same goes for treatment. While there is certainly some aspect of trial and error in treatment, it is important to remind a patient that, just because there is not complete relief or there may be an intolerable adverse effect, it does not mean there is not a treatment that will work for them. Once this concept is reinforced and we see patients having a solid support network, we observe patients getting out of the cycle of nonadherence.
How do you approach long-term condition management and treatment planning with your adult patients?
Emma: An important aspect of long-term care is starting with a fully comprehensive assessment that looks not only at the patient, but also at the community they live in, including cultural considerations, social supports, resources available, and much more. We also have to include all members of the interdisciplinary healthcare team for consistency and continuity of expected outcomes. A crucial part of the conversation should be the side-effect profile of medications, since it is one of the biggest reasons for patients to stop their treatment. The benefits versus the risks of any treatment should be an ongoing discussion throughout treatment. Many times, I tell patients and caregivers that we will start with Plan A, but we may have to move to Plan B or C. When I am doing this, it is an informed decision between everyone, not just me.
Additionally, trust and open communication are critically important. In schizophrenia, some symptoms can result in mistrust and make it difficult to develop that therapeutic relationship. As a psychiatric NP, it is important to understand where these thoughts come from and remember that what the clients are experiencing is real to them, even if we know it is a symptom. I never minimize what a patient tells me, nor do I tell them they are wrong, because their distress is real. What makes psychiatric NPs unique is our ability to take care of patients holistically. We don’t just take care of an illness, we take care of the person, we take care of their family, and we look at their psychosocial setting to consider not only psychological factors, but the surrounding social environment as well. We consider all of this so that we can provide the best outcomes for our patients.
Katie, you said your son’s care team was integral to his long-term success. How so?
Katie: After what had already been a long journey, it seemed we were finally in the right hands. We’d gotten him into a program and the first thing the therapist said was, “There is hope, I don’t want you to think there is not hope.” Those words alone provided so much comfort, but so did the success stories they shared with us.
The approach they took was heavily focused on a robust care team, where everyone worked together but also worked with my son to allow him to feel involved in his own health.
There was also the additional benefit of having support groups, where parents and caregivers shared their experiences with one another. These support groups served as a tool for learning about situations, treatments, and approaches to care. These open discussions ultimately led us to LAIs.
Right after his first injection, my son said, “I’m going to have patience this time. Let the medication work and see what happens.” The biggest thing I noticed was that he went into the bathroom right after and brushed his teeth. This small task provided big hope for the future.
One day he came bounding out and said he was applying to college. He got in with an essay on the disorganization of his brain. There, he taught himself how to learn all over again and graduated with a degree in history.
Today, my son is one of those success stories.
Every story is unique. If you are an adult living with schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you.
Katie and Emma have both collaborated with Janssen Pharmaceuticals, Inc. They have been paid honorariums for their time.
Katie, a caregiver for her adult son living with schizophrenia: Katie’s oldest son had his first psychotic break in 2013 when he was 18 years old and was diagnosed with schizophrenia 3 years later in 2016 at the age of 21. Her son struggled with compliance on oral medications, and for him, taking a pill was a daily reminder that he was sick. Katie realized that with her son, he needed to feel like taking medication was his idea, but that was hard when he saw little benefit and continued to hear voices. Once he switched from oral medication to an LAI, Katie noticed major improvements in his symptoms. With her encouragement, her son graduated college, and in 2021, he was accepted to law school. Katie has learned a lot about schizophrenia through her son’s diagnosis and her career as a nurse, and is looking forward to all that he will accomplish with his symptoms managed.
Emma Mangano, DNP, PMHNP-BC: Emma has been a practicing nurse in the field of psychiatry for over 15 years. She has an extensive nursing background caring for the adult population in the emergency department (ED) as well as in inpatient and outpatient facilities. Her areas of expertise include emergency psychiatry, suicide risk assessments, crisis intervention, and care for the ED boarding population. Emma obtained her BA from Colgate University, BSN from Johns Hopkins University School of Nursing, MSN from the University of Maryland, DNP from Johns Hopkins University, and holds a psychiatric and mental health nurse practitioner (PMHNP) license.