RAISE Awareness about R.A.I.S.E. What does that mean?
In April 2015, I watched a webinar conducted by the Brain and Behavior Research Foundation that released the findings for a study called R.A.I.S.E. (Recovery After an Initial Schizophrenia Episode). The research project originated from NIMH (National Institute of Mental Health).
After watching it, I felt empowered. I felt validated. I felt humbled. As I listened, I heard the doctors and scientists discuss what I call the village approach geared for persons enduring a first episode psychosis. (FEP) The goal: recovery.
First, R.A.I.S.E. involved a team that met on a regular basis. The team consisted of specialists who work with the patient on a personalized plan for treatment. The study called it Coordinated Specialty Care. (CSC). The specialists offered psychotherapy, medication management, tailored to the patient, education and support for the family, case management, and work or education support for the individual. Shared decisions were made between the team, the individual and family members, when possible. Another goal of the study was to work with the team as soon as possible after the psychotic symptoms appeared. SEE (Supported Employment/Education) was encouraged for the individual to work towards recovery.
Why my feelings of empowerment, validation, humility?
The study used a model that appeared somewhat similar to our approach with our daughter Amber after doctors diagnosed her with schizophrenia. She had exhibited many of the symptoms: delusions, hallucinations, distorted thinking, difficulty finishing a task, trouble focusing, and reduced speaking. This was not how our twenty-four-year-old daughter acted in the past. We sought help as we did the following:
- We had her in treatment almost immediately.
- We found the NAMI organization just in time to enroll in a class immediately and began our education.
- Although all those involved in helping her move into recovery didn’t meet as a team, our family kept the communication between the therapist and the doctor up-to-date. I kept a diary of Amber’s daily emotions and faxed it to them prior to her appointments, usually 24 hours in advance. At times I advised her therapist of changes in her medications.
- Amber became part of the process. She wanted to recover. We worked at home daily with games that exercised her brain. Word games, number games, card games – anything that I thought would engage her broken brain and encourage healing.
- We contacted our local Vocational Rehab office and Amber trained for a CNA (Certified Nursing Assistant) and then later studied nursing. She found part-time employment when she felt able to handle the work.
As I watched the webinar presented by the Brain and Behavior Research Foundation in 2015, I realized we had used many of the same components implemented by the R.A.I.S.E. study which began in 2009.
But why, the feelings?
Amber received her diagnosis in January 2005, four years before the study began. By 2009, after four years of working toward recovery, she had moved out of our home. In 2009, she had a job, she shared an apartment with friends and led an active social life. We still helped her manage her finances, but she had almost reached full independence.
Now, eleven years later she continues to live in recovery. She continues to work full-time, manages all her own affairs/finances and leads a similar life to others her age. Her social calendar seems to burst at the seams. She also manages her medications and her appointments. She understands her illness and her need to take care of her health.
When I listened to the study, I felt validated, I felt empowered, I felt humbled. We had approached her schizophrenia in the correct manner. And I thank God that we did. I’m grateful I was given the graces I needed to guide her on her road to recovery.
I live in hope that one day all those affected with schizophrenia, or any of the mental illnesses, will experience a similar outcome. Until then, let’s reach out to those hurting, and to their families, with all the compassion and understanding we can muster.