Family Involvement in Treatment and Supporting Recovery

With few exception, families should be in regular communication with healthcare professionals. This means that family members should:

• provide information in the initial assessment process, because most of the time family members are aware of changes that the person is unable to observe or report;
• meet periodically with doctors and counselors;
• be aware of the person's diagnosis, and be involved in developing the treatment plan;
• play a role in treatment, such as helping to remind the person about taking medicine, monitoring and reporting symptoms, and supporting the person in their goals.

A few pointers:

• If the person is unwilling to sign a release of information to have the professionals talk to family members, family members can still give information to the professionals about their observations. Also, professionals should be willing to talk in general terms about diagnosis, treatment and problem solving, and families should still seek out educational resources.
• Some professionals are less willing to meet with families than others. It is important to find a professional who understands the importance of the family role is, and who wants to talk with you.
• Try to be concise and specific in your communication with professionals. They are often very busy and may miss your most important points if you provide too much information at a time.
• When communicating with professionals, it is helpful to write things down in concise, specific bullets.
• When advocating, it is helpful to choose the one thing that is most important and focus on that, rather than trying to advocate for several things at once.
• It's helpful to review written records and make corrections where you see errors.

A few tips in supporting the treatment process:

• In the early stages, psychosis affects all aspects of a person's ability to care for himself or herself. It may be difficult to get out of bed, to prepare meals, to shower, to remember things, to read, to get organized and motivated to do anything. This is part of the illness. Be patient, prioritize, and encourage progress one step at a time.
• It is OK to help your loved one. Use the following question about whether your involvement is helping or hindering: Am I helping my loved one to do more or less? If the answer is less, you may want to reconsider your approach. But remember, in the beginning everything they do will probably be a major struggle for them.
• Most people with psychosis have difficulty with short-term memory. In the early stages, it is particularly important to pay attention to whether people are getting their medicine as prescribed.
• Where the person is at developmentally may affect what role you can play. If they are rebelling against you, you may need to work more closely with other friends, family members and professionals to let others take on caregiving roles.
• Maintain a positive, hopeful attitude. While it is a long process, recovery is likely and "Slow and steady wins the race."
• Continue to involve your loved one socially with friends and family.
• Educate other friends and family members about the illness and what to expect.

Advocating for change:

If you are unhappy with any aspect of the services you are receiving, it is important to talk directly to the person who is most involved, whether It's your counselor, doctor, or someone else. You can also call a supervisor, and if you're part of EASA, you can call the EASA Program Coordinator. Try to be specific about what you need or would want. You always have the right to change case manager or doctor, although there may be limitations of availability within agencies.

Each agency has a published complaint/grievance process to help resolve problems as they arise. For Oregon Health Plan and other state-funded services, you have the right to appeal a grievance to the state level.

Almost everything that has been achieved in the mental health system has happened because of advocacy by people who were affected. It is important for decision makers at all levels to hear the stories of the people the "system" is supposed to serve; otherwise, it cannot possibly be responsive or helpful.

There are many opportunities for advocacy. NAMI offers excellent conferences and training, and advocates at local, state and national levels. Many local NAMI groups meet regularly in an "official" capacity with important local decision makers, and often being an "official representative", or having an official position by a NAMI group can be very persuasive to local decision makers. Local mental health programs and other public organizations have governance and advisory boards you can join. Mid-Valley Behavioral Care Network and other publicly funded managed care programs are mandated to involve families and people in recovery in committees and governance. There are many ways to get involved!

The EASA program is one way to learn more and meet others who have an interest in fostering a proactive, positive, responsive community for people with psychosis. Systematic early intervention for psychosis is extraordinarily rare in the United States, and the services offered by EASA are not available everywhere. Thus, families commonly must cope without the type of professional support they need. As the voices of young people in recovery and their families are heard more often throughout the U.S., that reality will change.