Caring for a loved one with psychosis brings emotional, social, and financial challenges but can also be profoundly meaningful. Family caregivers play a key role in supporting recovery while often facing significant stress and uncertainty. This guide provides practical advice to help caregivers manage their responsibilities and protect their own well-being.
The Caregiver’s Role
Caregivers are essential to managing treatment adherence, offering emotional support, coordinating daily tasks, and responding to crises. Many caregivers don’t initially recognize that their role extends beyond typical family duties. Therefore, acknowledging the demands of caregiving is the first step toward accessing the appropriate resources.
Research emphasizes that family involvement can positively impact psychosis care. Benefits include improved medication adherence, fewer relapses, and shorter hospital stays (1,2). Families who actively participate in treatment plans can significantly enhance recovery outcomes for both their loved one and themselves. (3).
Why Caregivers Matter
A supportive family environment is critical for recovery. Additionally, when families maintain a positive atmosphere, it enhances treatment adherence and lowers the risk of relapse. On the other hand, high levels of expressed emotion, such as criticism or hostility, are linked to poorer outcomes (4,5). Early intervention and family-focused care help reduce hospital readmission rates and improve long-term functionality (6).
The Impact on Caregivers
Caregivers of individuals with psychosis often experience higher stress levels than those caring for people with other chronic conditions (7). In fact, up to 50% of caregivers report strained relationships and social isolation (3). Some of the common challenges caregivers face include:
-
Mental health effects
Chronic stress, anxiety, and depression.
-
Social withdrawal
Losing connections with friends and family.
-
Family strain
Increased conflict due to balancing caregiving and household duties.
-
Burnout
Emotional exhaustion similar to what mental health professionals experience (9).
Supporting Your Well-being: A Marathon, Not a Sprint
Long-term caregiving requires ongoing self-care. For this reason, caregivers must prioritize their own well-being to prevent burnout. Here are some strategies to support mental and physical health:
-
Therapy and support groups
Professional support helps caregivers develop coping strategies (8).
-
Mindfulness
Practicing mindfulness can reduce stress and build emotional resilience.
-
Physical activity
Regular exercise, adequate sleep, and balanced nutrition are essential for mental health (10).
-
Delegating tasks
Sharing responsibilities helps prevent caregiver fatigue or burnout.
-
Taking breaks
Hobbies and social activities are important for recharging, maintaining balance, and overall well-being.
Acceptance: A Key to Resilience
Acceptance means adapting to the realities of psychosis while staying hopeful. Celebrating small victories, no matter how minor, is crucial. Recovery is not always linear, so caregivers need to adjust their expectations and remain flexible.
Building Healthy Family Dynamics
A calm, predictable home environment promotes better outcomes for individuals with psychosis. By doing so, families can reduce tension by managing their emotional responses and fostering open communication. Acknowledging positive behaviors helps reinforce progress (1,4).
Planning for Relapses and Early Warning Signs
Relapses are common, especially in the early stages of psychosis. Caregivers can work with their loved one to identify early warning signs—such as increased anxiety or withdrawal—and establish a response plan (10). Consequently, preventing medication non-adherence and managing stress factors can also reduce the risk of relapse (2).
Conclusion: Holding Hope and Finding Balance
Resources
Caregiving for someone with psychosis is a demanding but meaningful journey. With appropriate support, caregivers can create a sustainable care environment that benefits both them and their loved one. Remember, self-care is not a luxury—it is essential to providing effective care.
Article Authored by Toni Gibbs-Dean, PhD
Resources
For more insights, consider these resources:
STEP Learning Collaborative Family and Community Workshops
Check out our recent workshop dedicated to self-care for caregivers. You can view all workshop recordings and sign-up to attend future workshops here.
STEP Provider Training and Consultation
STEP Learning Collaborative also provides trainings intended for front-line clinicians of various disciplines working to support individuals and families impacted by early psychosis. While geared towards providers, any interested community member is welcome.
They also provide a consultation service for clinicians, administrators and leaders of healthcare systems who would like to consult about their continuing care of young people with recent onset psychosis between the ages of 16 and 35. Just fill out the online form.
NAMI Family Support Groups
Gain insight from the challenges and successes of others facing similar experiences. NAMI Family Support Groups are peer-led groups for any adult with a loved one who has experienced symptoms of a mental health condition. They follow a structured model, ensuring everyone has an opportunity to be heard and have proper support.
Psychosis REACH
Psychosis REACH teaches concrete, evidence-based skills that are rooted in Cognitive Behavioral Therapy. Utilize their free resources including: online courses, virtual events, and Family Ambassador Program.
References
- Pitschel-Walz, G., Leucht, S., Bäuml, J., Kissling, W., & Engel, R. R. (2004). The effect of family interventions on relapse and rehospitalization in schizophrenia—A meta-analysis. Schizophrenia Bulletin, 30(1), 123–134.
- Pharoah, F., Mari, J. J., Rathbone, J., & Wong, W. (2010). Family intervention for schizophrenia. Cochrane Database of Systematic Reviews.
- Onwumere, J., Bebbington, P., & Kuipers, E. (2011). Family interventions in early psychosis: A systematic review. Schizophrenia Research, 125(1), 13–21.
- Butzlaff, R. L., & Hooley, J. M. (1998). Expressed emotion and psychiatric relapse: A meta-analysis. Archives of General Psychiatry, 55(6), 547–552.
- Cechnicki, A., Bielańska, A., Hanuszkiewicz, I., & Daren, A. (2013). The predictive validity of expressed emotions (EE) in schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 48(12), 1867–1875.
- Addington, J., & Burnett, P. (2004). Early detection and intervention in psychosis: A narrative review. Clinical Psychology Review, 24(2), 241–262.
- Lobban, F., Barrowclough, C., & Haddock, G. (2013). An examination of the impact of family interventions on family members’ burden and psychological distress. Schizophrenia Bulletin, 39(1), 38–43.
- Missing Raune et al., 2004
- Mihalopoulos, C., Magnus, A., Carter, R., & Vos, T. (2004). The economic analysis of early intervention in psychosis: Cost-effectiveness. Australian and New Zealand Journal of Psychiatry, 38(5), 334–343.
- Jackson, H. J., & McGorry, P. D. (2009). The recognition and management of early psychosis: A preventive approach. Cambridge University Press.