In schizophrenia care, even the support system needs support

The National Institute of Mental Health (NIMH) describes schizophrenia as “a serious mental illness that affects how a person thinks, feels and behaves.” At times, the nature of schizophrenia may even disrupt a person’s sense of reality. Those moments can be frightening and disorienting, not only for the person experiencing them, but also for loved ones trying to help.

I know that feeling from personal experience. I grew up with a father who lived with schizophrenia and my daughter lives with schizoaffective disorder, bipolar type. A major part of why I dedicated my career to this field was to improve outcomes for those living with serious mental illness (SMI) and the care partners who support them.

Learning to listen

After a schizophrenia diagnosis, families must learn how to navigate treatment, respond to symptoms, and communicate effectively. My family is no different. At 35 years old, my daughter has been living with her diagnosis for quite some time, and we are still learning how to communicate.

For example, not every emotion a person feels is a red flag. At first, whenever I noticed a shift in my daughter’s mood, I would jump to ask, “Did you take your medicine?” I learned that my intention and her interpretation of the question weren’t the same. When I shifted my mindset to ask, “What do you need from me?”, she shared that she simply needed me to listen.

Communication is complicated by the realities of a condition like schizophrenia. SMIs ask a lot of care partners who are, alongside their loved one, also trying to understand the diagnosis, what treatment may look like, what changes could signal a crisis, and where to turn when they need help. There’s a lot to learn and no roadmap.

A recent Caregiver Action Network (CAN) survey of care partners supporting people living with schizophrenia shows just how involved they are: 92% provide medication reminders, 90% attend medical appointments, 89% provide emotional support, and 88% discuss treatment or medication options with healthcare providers.

Care partners are often expected to take on these responsibilities without any formal guidance. That is why psychoeducation is best started early in the diagnosis and treatment journey. Psychoeducation helps patients and families understand the illness, treatment options, and their role on the care team. When I work with my patients and their support systems, we talk about everything from symptoms and medications to practical skills, such as how to solve problems together, how to communicate when emotions are high, and how to speak up, ask questions, and set boundaries.

Just as importantly, we prepare for what may happen next. What changes could signal a relapse? Who should be called? What is the plan if there is a crisis or concern about suicide? The goal of psychoeducation is for patients and care partners alike to feel informed, capable, and prepared for eventual questions or challenges.

Remaining curious changes the conversation

In my roles as both a care partner and a clinician, I always try to remain curious and ask open-ended questions. It doesn’t matter how much we know (and think we know) about the disease. Our understanding will always be different compared to the person living it. Instead of assuming why someone is behaving a certain way, we should ask about, to the extent they’re comfortable or able to share, their thoughts or feelings. Oftentimes, this contributes to trust and awareness. 

An experience with my father offers a useful illustration. After starting a new treatment, the hallucinations that were a symptom of schizophrenia for him went away completely. As his daughter and a healthcare professional, I thought this was great! He had the completely opposite reaction, and, in his words, felt the medicine nearly killed him. 

Over his entire life, he had heard voices, to the point they were tolerable. To then, all of a sudden, not hear them at all felt dangerous to him. As he explained it, he didn’t know what they were doing or planning. 

I had to understand what that meant from his perspective. As providers and care partners, we may not always agree, but doing our best to see it from the first-person experience is imperative.

I strongly believe that treatment planning should be patient-centric. In my experience, shared decision-making leads to better outcomes.

When discussing medication options, providers should share all relevant information with the patient and, when appropriate, their care partners. After everyone has had the opportunity to ask questions and understand the options, I might say, “Based on what you’ve told me about your symptoms and your health history, this is the treatment I think may be the best fit. What are your thoughts about that?” This framework starts, rather than stops, a conversation.

Treatment as an opportunity

When discussing medication options, it’s not uncommon for patients to comment that taking a pill every day can feel like an added daily reminder of their diagnosis. For some people, a long-acting injectable (LAI) medication can help reduce that psychological burden by providing therapeutic dosing levels that last for a month or even longer. It may also ease the pressures of remembering a pill every day, managing frequent refills, or having medication become a recurring source of tension between patients and their care partners. LAIs are not the right choice for everyone, but they can be valuable to discuss as part of shared decision-making.

Medication planning might also take care partners’ involvement into consideration. According to the same CAN survey mentioned above, among care partners whose loved one had taken an LAI, 54% said the greatest benefit was only having to think about medication once every few weeks or months, 39% said it was the confidence their loved one had taken medication as prescribed, and 30% valued not worrying each day about whether medication had been taken.

How we introduce treatment options matters. I try to present each choice as an opportunity. While it’s important to be candid about potential risks and side effects, it isn’t helpful to talk about any kind of treatment as a punishment or a consequence. If the patient declines, we remain curious and continue the conversation. What concerns you? What has your experience been like before? What would help you feel more comfortable?

Care partners need care, too

Caregiving comes with its own significant mental load. Emotional intelligence, which includes self-awareness, motivation, knowing your purpose, and understanding what drives you, is critical for care partners to cultivate and monitor. This funnels into what I call my three As: first, acknowledge what you are feeling; next, analyse those feelings to understand where they originate; lastly, determine the action plan.

I encourage care partners to be kind to themselves. There are many organisations, such as National Alliance on Mental Illness (NAMI) and Substance Abuse and Mental Health Services Administration (SAMHSA), to lean on when support is needed. Additionally, providers can connect care partners to more local or focused peer and community resources.

Supporting someone living with schizophrenia requires communication, curiosity, and a willingness to listen when their experience is different from what we expect. Care partners benefit from information and practical guidance, but they also need support, boundaries, and permission to give themselves grace.

About the author

Dr Tracy Hicks is a dual-certified family and psychiatric mental health nurse practitioner with over two decades of hands-on experience supporting people living with serious mental health conditions across the full continuum of care. She is the founder of C-Trilogy Comprehensive Clinical Care/C-Trilogy Outreach, a certified community behavioural health clinic providing mental health services, substance use support, primary care, and 24-hour crisis help.