Reclaiming Control: Q&A with Psych Nurse and Adult Living with Schizophrenia
It’s challenging for adults living with schizophrenia or schizoaffective disorder to really feel like others understand what they’re going through. However, patients’ support networks and treatment teams— which may include nurse practitioners, physician assistants, social workers, and others, in addition to psychologists or psychiatrists—are there to support them. These additional healthcare providers play a crucial role in helping adults connect to the resources, services, and information they need to meet their care needs.
Each member of the treatment team has a unique and important role helping adults living with schizophrenia or schizoaffective disorder manage their condition. Understanding these roles and having open conversations with treatment team members can help adults develop strong relationships with their treatment team and become their own advocates. These conversations can cover topics like therapy and medication, as well as goals and things that give purpose, like relationships, work, and educational opportunities. All are important to share with the treatment team to ensure the best treatment management and care plan is developed.
With the right treatment plan and support, adults living with schizophrenia or schizoaffective disorder can be empowered to stay on track in their treatment management journey and change what it means for them to live with and manage schizophrenia symptoms. Treatment team members, like psychiatric mental health nurse practitioners (PMHNPs), can be strong advocates for adults, and adults should feel empowered to work with their care teams to receive the best possible care for them.
Here’s a conversation with Jason, an adult living with schizoaffective disorder, and Jonathan, a PMHNP, about managing schizoaffective disorder or schizophrenia and how the treatment team can help partner with adults along the journey.
Q: How would you describe the role of the treatment team, specifically PMHNPs, in supporting adults living with schizoaffective disorder or schizophrenia?
Jason (adult living with schizoaffective disorder): The mental health professionals that I’ve worked with who have been willing to hear me and listen to me about my experiences with medication for my schizoaffective disorder symptoms have really made a difference. It can sometimes feel easier to talk to psychiatric nurses than other members of the treatment team. I am working with a nurse practitioner right now and she’s great. She asks me about how I’m doing and really tries to understand my situation, beyond my schizoaffective disorder symptoms and medication, and has empathy.
Jonathan (DNP, PMHNP-BC): PMHNPs are specially trained to work in the mental health field and have the necessary training and expertise to provide safe, competent, and exceptional care in a variety of different settings. We are strong patient advocates and can be an invaluable resource for adults living with schizoaffective disorder or schizophrenia. PMHNPs work in collaboration with other healthcare professionals, such as psychiatrists, psychologists, therapists, and social workers, to ensure that consistent care is provided.
As a provider, it is my responsibility to make sure that my patients feel heard and validated and to also provide them with accurate and relevant information on treatment options so that they can make an informed decision that best suits their needs and preferences. Working as a psychiatric registered nurse prior to becoming a PMHNP was extremely invaluable in my professional development because it allowed me to work closely and collaboratively with my adult patients to better understand their unique needs, cultural backgrounds, and experiences with schizoaffective disorder or schizophrenia to ensure that they were receiving the best possible treatment plan for them.
Q: How do you approach or view the schizoaffective disorder and schizophrenia treatment journey, including finding a treatment plan that works?
Jason: Prior to finding a treatment plan that worked for me, I was prescribed an oral antipsychotic to manage my schizoaffective disorder symptoms and struggled to take it. For about 10 years I was living an unhealthy and noncompliant lifestyle, which resulted in hospitalizations and being taken into custody by police, because my schizoaffective disorder symptoms were unmanaged.
The right treatment plan for me includes INVEGA SUSTENNA® (paliperidone palmitate), as recommended by my healthcare provider. My medication, along with my complete treatment plan, has helped me manage my symptoms, and with my symptoms under control, I am able to do the things I love and be more social. I recognize that schizoaffective disorder is a lifelong condition and that managing it takes time. Looking back at my experiences, I was on a journey, and it took me a while to get to where I’m at today. My treatment plan now fits my lifestyle and is more convenient for me. With INVEGA SUSTENNA®, my symptoms are managed for 1 month in just 1 dose.
Sometimes I catch myself in the moment, where I take the time to recognize that I’m happy and content. These moments are powerful for me to just live in the present, be happy with myself, and live on my own terms.
Jonathan: The patient-provider relationship should be rooted in good communication, transparency, mutual respect, and teamwork. Once trust and empathy are established and fostered, I’ve found that the care and treatment journey for adults is much more seamless, efficient, and successful.
Asking meaningful questions that are centered around supporting an adult living with schizoaffective disorder or schizophrenia and meeting their needs will help nurture the patient- provider relationship and will also help facilitate better communication and understanding to ensure that the patient is receiving relevant access to various treatment options across the continuum of care. An individualized treatment plan is a comprehensive, progressive, personalized plan that is patient centered, culturally competent, and addresses personalized goals and objectives that meet the patient’s needs. In addition, the treatment plan should include a recovery-oriented plan, to help adults on this continuing journey as they strive towards productive lives with symptoms controlled. The term “recovery” means different things to different people. It could mean managing schizoaffective disorder or schizophrenia symptoms, living independently, having a job, or having friends or social support. Creating an individualized treatment plan is not only crucial but also fundamental to patient success because it encourages the individual to recover in a way that is best suited for them while also considering their circumstances.
Q: What advice do you have for someone who is newly diagnosed and is struggling to start and maintain treatment?
Jason: There’s not one plan that will work for everyone. You need to find what works for you. It was hard for me to accept my diagnosis, and I struggled to realize that I needed medication. I now live a life where I try not to let things fester. If you have a problem and you don’t know how to fix it, tell someone, especially when it comes to your medication and care. Take notes on how you’re feeling in between appointments and any concerns that you have.
It’s also important to live a healthy lifestyle. For me, this includes being an advocate and writing. Sharing my lived experience helps me be honest with myself and help others see what is possible with the right treatment plan.
Jonathan: Every person recovers differently, and each treatment journey is unique. By creating an individualized treatment plan, the provider acknowledges that each patient is special and understands that the physical, mental, and emotional needs will vary depending on the patient’s situation.
With proper treatment, guidance, and lifestyle modifications, adults living with schizoaffective disorder or schizophrenia can successfully manage their condition depending on their willingness to remain compliant with their ongoing treatment regimen. The most effective way to approach conversations around medication adherence and treatment choice, including identifying potential adult patients living with schizoaffective disorder or schizophrenia who may benefit from a longer- acting treatment, is to first understand the patient’s given situation and to ask meaningful
questions about the patient’s opinion regarding longer-acting treatment.
If you or someone you love is exhibiting signs of schizoaffective disorder or schizophrenia, please do not wait to seek help or find support. The earlier the diagnosis is made and treatment begin, the greater the opportunity for patients to take ownership of their treatment journey in order to work towards and achieve their treatment goals
Q. After finding the right treatment plan, what is possible for adults living with schizoaffective disorder or schizophrenia?
Jonathan: In my clinical experience, I’ve seen how treatment compliance and adherence are key factors in successful symptom management. With their symptoms managed, I’ve seen my adult patients achieve things they didn’t think possible. Many of my adult patients have gotten married, started families, and are successfully working in high-functioning roles and positions because of their commitment and willingness to collaborate with their provider and continue their individualized treatment plan.
Jason: Once I accepted my diagnosis and treatment, my symptoms were manageable. Now, I am a writer, advocate, and volunteer, and share my story in order to help others going through similar experiences. Caregivers want to know what it’s like for their loved ones or adults living with schizoaffective disorder and want to know how they can best deal with it. With my symptoms managed, I’m able to help answer those questions and to destigmatize schizoaffective disorder and schizophrenia by sharing my experiences.
Every story is unique. If you are an adult living with schizoaffective disorder or schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you.
Jason and Jonathan have both collaborated with Janssen Pharmaceuticals, Inc. They have been paid honorariums for their time.
Jason (adult living with schizoaffective disorder): Today, Jason uses his passions for writing and helping others struggling with schizoaffective disorder and schizophrenia to share his experiences with the public to destigmatize the diagnosis and other serious mental health disorders. He has written 2 books and has been published in multiple national publications related to schizoaffective disorder and schizophrenia. Jason was about 24 years old when he began developing symptoms of schizoaffective disorder. Because of his hallucinations, Jason struggled to accept treatment was needed. After a decade of nonadherence, Jason found a treatment plan that works for him, which includes INVEGA SUSTENA®.
Jonathan Llamas (DNP, PMHNP-BC): Jonathan possesses an extensive nursing background caring for the adult population in inpatient psychiatric and acute care and has the distinct honor and privilege of providing compassionate, holistic, and individualized care in response to various psychiatric and mental health conditions. His experience as a provider encompasses a wide range of mental health disorders, including schizophrenia, and he is a strong believer in the importance of building a collaborative relationship while also finding the most optimal treatment regimen available that suits each patient. Jonathan received his Bachelor of Science in Nursing from West Coast University in 2013 and his Doctor of Nursing Practice from Loma Linda University in 2019.
INVEGA SUSTENNA® (In-VEY-guh Suss-TEN-uh) (paliperidone palmitate) Extended-Release Injectable Suspension is a prescription medicine given by injection by a healthcare professional.
INVEGA SUSTENNA® is used for schizoaffective disorder in adults, either alone or in combination with other medicines such as mood stabilizers or antidepressants, and is used to treat schizophrenia in adults.
IMPORTANT SAFETY INFORMATION
Do not receive INVEGA SUSTENNA® if you are allergic to paliperidone, paliperidone palmitate, risperidone, or any of the ingredients in INVEGA SUSTENNA®. See the end of the Patient Information leaflet in the full Prescribing Information for a complete list of INVEGA SUSTENNA® ingredients.
Before you receive INVEGA SUSTENNA®, tell your healthcare professional about all your medical conditions, including if you:
- have had Neuroleptic Malignant Syndrome (NMS)
- have or have had heart problems, including a heart attack, heart failure, abnormal heart rhythm, or long QT syndrome
- have or have had low levels of potassium or magnesium in your blood
- have or have had uncontrolled movements of your tongue, face, mouth, or jaw (tardive dyskinesia)
- have or have had kidney or liver problems
- have diabetes or have a family history of diabetes
- have had a low white blood cell count
- have had problems with dizziness or fainting or are being treated for high blood pressure
- have or have had seizures or epilepsy
- have any other medical conditions
- are pregnant or plan to become pregnant. It is not known if INVEGA SUSTENNA® will harm your unborn baby
- If you become pregnant while taking INVEGA SUSTENNA®, talk to your healthcare professional about registering with the National Pregnancy Registry for Atypical Antipsychotics. You can register by calling 1-866-961-2388 or visit http://womensmentalhealth.org/clinical-and-research-programs/pregnancyregistry/.
- Infants born to women who are treated with INVEGA SUSTENNA® may experience symptoms such as tremors, irritability, excessive sleepiness, eye twitching, muscle spasms, decreased appetite, difficulty breathing, or abnormal movement of arms and legs. Let your healthcare professional know if these symptoms occur.
- are breastfeeding or plan to breastfeed. INVEGA SUSTENNA® can pass into your breast milk. Talk to your healthcare professional about the best way to feed your baby if you receive INVEGA SUSTENNA®.
Tell your healthcare professional about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Know the medicines you take. Keep a list of them to show to your healthcare professional or pharmacist when you get a new medicine.
Patients (particularly the elderly) taking antipsychotics with certain health conditions or those on long-term therapy should be evaluated by their healthcare professional for the potential risk of falls.
What should I avoid while receiving INVEGA SUSTENNA®?
- INVEGA SUSTENNA® may affect your ability to make decisions, think clearly, or react quickly. Do not drive, operate heavy machinery, or do other dangerous activities until you know how INVEGA SUSTENNA® affects you
- avoid getting overheated or dehydrated
INVEGA SUSTENNA® may cause serious side effects, including:
- See “What is the most important information I should know about INVEGA SUSTENNA®?”
- stroke in elderly people (cerebrovascular problems) that can lead to death
- Neuroleptic Malignant Syndrome (NMS). NMS is a rare but very serious problem that can happen in people who receive INVEGA SUSTENNA®. NMS can cause death and must be treated in a hospital. Call your healthcare professional right away if you become severely ill and have any of these symptoms: high fever; severe muscle stiffness; confusion; loss of consciousness; changes in your breathing, heartbeat, and blood pressure
- problems with your heartbeat. These heart problems can cause death. Call your healthcare professional right away if you have any of these symptoms: passing out or feeling like you will pass out; dizziness; or feeling as if your heart is pounding or missing beats
- uncontrolled movements of your tongue, face, mouth, or jaw (tardive dyskinesia)
- metabolic changes. Metabolic changes may include high blood sugar (hyperglycemia), diabetes mellitus and changes in the fat levels in your blood (dyslipidemia), and weight gain
- low blood pressure and fainting
- changes in your blood cell counts
- high level of prolactin in your blood (hyperprolactinemia). INVEGA SUSTENNA® may cause a rise in the blood levels of a hormone called prolactin (hyperprolactinemia) that may cause side effects including missed menstrual periods, leakage of milk from the breasts, development of breasts in men, or problems with erection
- problems thinking clearly and moving your body
- difficulty swallowing that can cause food or liquid to get into your lungs
- prolonged or painful erection lasting more than 4 hours. Call your healthcare professional or go to your nearest emergency room right away if you have an erection that lasts more than 4 hours
- problems with control of your body temperature, especially when you exercise a lot or spend time doing things that make you warm. It is important for you to drink water to avoid dehydration
The most common side effects of INVEGA SUSTENNA® include: injection site reactions; sleepiness or drowsiness; dizziness; feeling restlessness or needing to be constantly moving; abnormal muscle movements, including tremor (shaking), shuffling, uncontrolled involuntary movements, and abnormal movements of your eyes.
Tell your healthcare professional if you have any side effect that bothers you or does not go away. These are not all the possible side effects of INVEGA SUSTENNA®. For more information, ask your healthcare professional or pharmacist.
General information about the safe and effective use of INVEGA SUSTENNA®.
Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use INVEGA SUSTENNA® for a condition for which it was not prescribed. Do not give INVEGA SUSTENNA® to other people, even if they have the same symptoms that you have. It may harm them. You can ask your pharmacist or healthcare professional for information about INVEGA SUSTENNA® that is written for healthcare professionals.
This Patient Information leaflet summarizes the most important information about INVEGA SUSTENNA®. If you would like more information, talk with your healthcare professional.
Please click here to read the full Prescribing Information, including Boxed WARNING, for INVEGA SUSTENNA® and discuss any questions you have with your healthcare professional.