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 Role of Family
Family members play an extremely important role in recovery from psychosis. Extensive research has demonstrated that strong family support is one of the most important contributors to a successful recovery. Families play a number of key roles:
- Providing information and insight about the person.
- Maintaining a focus on the person’s strengths and interests.
- Advocating to meet the person’s needs.
- Learning new information and skills.
- Assistance with remembering medicine and initiating activities.
- Observing and reporting symptoms the person may not notice.
- Including the person in day-to-day family activities.
- Helping to create a safe, positive, supportive environment for the person.
- Helping the person with finances.
- Staying in regular contact with the counselor and doctor.
All family members involved with EAST are strongly encouraged to participate in day-long family workshops offered by the program. Families involved with the program for more than six months are strongly encouraged to join a multi-family group. Multi-family groups are a highly effective method of solving problems and maintaining social support. The groups are based on a well-researched best practice approach, and have been associated with significantly improved outcomes. Information about multi-family groups and the other best practice approaches being disseminated by the Center for Mental Health Services is available at: http://www.mentalhealth.samhsa.gov/cmhs/communitysupport/toolkits/
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Impact on Family Members
Grief. Psychosis can have a tremendous impact on all family members. Almost universally, psychosis is accompanied by a grief process which affects everyone. The stages of the grief process include shock/denial, learning to cope, and acceptance. Individuals at different stages of grief need different things. See http://w3.ouhsc.edu/safeprogram/15.html for a more comprehensive discussion.
Family conflict. Family members are often at different places in the grief process, which may cause conflict. As families continue to deal with psychosis, they may go through the grief process many times. This is normal. However, it is also important to pay attention to how family members are affected by the stress and grief associated by this illness, and not to hesitate to get additional counseling. Psychosis often causes a great strain on marriages and family relationships, since individuals may reach very different conclusions about how to handle the situation. Patience and communication skills become critically important.
Since psychosis is often preceded by early, or “prodromal” symptoms, families often observe changes for an extended period before they begin to understand what’s happening. Prodromal (early) symptoms such as sleep disorder, social withdrawal and behavior changes are often mistaken for drug use, intentional conduct problems or laziness. In fact, as people deal with some of the early changes to memory, concentration and thought process, they may turn to drugs as a way of coping.
Developmental impact. Psychosis has a direct effect on development. One of the goals of EAST is to minimize that impact so that the person will move on with life in a positive way. Since psychosis usually affects people starting between ages 15 and 25, some of the key developmental tasks can be directly impacted:
- Experimenting with and forming an independent identity
- Individuating and separating from parents
- Learning independent living skills
- Living independently
- Finishing school
- Entering the work force and identifying a career path
- Establishing adult peer relationships
- Sexuality
- Starting a family
If these developmental tasks are interrupted, the person will have to return to them later before they’ll be able to progress developmentally. Also, each member of the family who is directly affected by psychosis will likely be affected developmentally. Parents who are preparing to send their child out into the world experience a return to dependency and a need to provide more direction. Siblings often develop a fear of developing psychosis themselves, and may make different choices in relationships because of their need to cope with confusion, grief and loss. It is common for siblings to enter caregiving professions.
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Understanding Psychosis
Since most of the symptoms of psychosis have to do with perception and
information processing, they are usually observed by others as
behavior. One reason why it is important for friends and family members
to become more educated about the symptoms of psychosis is that without
this education, they are likely to misinterpret the behavior they see.
For example, a parent may notice their child getting more and more
angry, but not understand why. Below are a couple of typical examples:
- “My son kept getting angrier and angrier at me. Sometimes he’d
yell at me and tell me to leave him alone. What I didn’t learn until
later was that he was experiencing ‘thought insertion’- He believed I
was putting thoughts in his head. No wonder he acted so defensive! I
thought he was just upset that I was telling him to get a job.”
- “My daughter just wouldn’t leave her room. We tried to get her to
join the family, but she’d only stay for fifteen minutes, then would
run from the room and wouldn’t come out for hours. We thought she was
upset at us for some reason. Later we found out that the stimulation of
having a group of people was just too much for her, plus she was
hearing voices telling her we were trying to hurt her.”
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Communication
Since psychosis directly affects a person’s ability to perceive,
interpret and communicate information, family members have to learn new
communication skills.
A few key tips in communicating with a person who has psychosis:
- Psychosis generally makes people much more sensitive to emotional
tones and stimulation. It will help to keep the environment as low-key
as possible, and to speak to the person with a kind, matter-of-fact
voice.
- Use short sentences. Don’t try to go into long explanations.
- Be concrete and specific. Avoid abstractions and generalities.
- Be careful about word choice to avoid communicating negative judgment.
- Provide consistent, sincere praise and positive feedback.
- After you speak, give the person plenty of time to digest the information and respond.
- If there is something particularly important you are trying to
communicate, use simple words and repeat the same language rather than
using different language.
- Don’t argue with people about delusional beliefs. Remember that
their perception of reality is just that to them: reality. Directly
confronting delusions usually causes people to become defensive and
less prepared to consider alternatives.
- Don’t “go along with” or agree to delusions, either. Learn
reflective listening techniques. Agree to disagree. Approach delusions
in a spirit of shared inquiry. Don’t push if the person starts to get
upset.
Reflective Listening
No matter how hard it is to understand what a person is saying, there
is ALWAYS a grain of truth. When a person is experiencing psychosis,
their communication gets mixed up, but through reflective listening you
can find a common ground.
The steps in reflective listening with a person who has a psychosis:
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Listen to what they’re saying. Look for elements of reality. Ask
yourself what they are feeling, or how you would feel in the situation.
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Ask clarifying questions only. Comment about the feeling, without stating any judgments about the content.
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Give the person time to respond.
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Comment about feeling again, and maybe gently begin to reframe/create a shared context.
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Give the person time to respond.
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Begin to identify “common ground”- reality you can agree on, or a way of addressing the feelings the person is having.
Here are a couple of examples:
Example 1.
Person with psychosis: “God told me he doesn’t want me to take my medicine.”
Family member: “How did God tell you that?”
Person with psychosis: “God created the world in seven days, and on the
seventh day He rested, and I can’t rest on this medicine”.
Family member: “Wow, resting is so important. You must be totally exhausted if you can’t rest.”
Person with psychosis: “Yeah, they put me on this really high dose.”
Family member: “How about if we talk to the doctor about doing something to help you rest.”
Person with psychosis: “Can you talk to him for me?”
Example 2:
Person with psychosis: “Everybody in town is after me.”
Family member: “That sounds terrifying to think everybody’s after you.”
Person with psychosis: “It IS terrifying.”
Family member: “No wonder you’re so upset. What led you to feel that everybody’s after you?”
Person with psychosis: “There are all these cars outside.”
Family member: “Hmm, that’s interesting (going to look at the cars).
Gee, there’s a shopping center across the street. Do you think that
might be part of why there are so many cars?”
Person with psychosis: “Well, maybe… but I still think people are after me.”
Family member: “It sounds like you’re feeling really scared. What can we do to help you feel safe?”
The book by Xavier Amador, I’m Not Sick, I Don’t Need Help, is
particularly useful for families trying to communicate with a person
who does not accept that they are ill.
Amador makes several key points:
- Sometimes it is actually better for people not to accept a
psychiatric label, if they have negative beliefs about what that label
means. By using their language rather than insisting that they accept a
particular diagnostic label, they are more likely to choose treatment.
Usually adapting to medical diagnoses such as psychosis and
schizophrenia involves a process of “de-stigmatizing”, re-thinking what
those labels do and don’t mean.
- Amador also points out that people with schizophrenia (and
psychosis in general) often experience cognitive problems which are not
immediately obvious. In particular, he discusses “anasignosia”, a brain
condition in which individuals are unable to recognize medical
symptoms. He hypothesizes that this may be a significant factor for
some people who “lack insight” about their illness; they may, in fact,
be literally unable to recognize the symptoms.
- Amador reinforces the importance of reflective listening, and
offers the “LEAP” model: “Listen, Empathize, Agree, Partner”. The
bottom line is to listen for what the person finds motivating,
empathize with them, find common ground you can agree on, and partner
with them to address common goals.
Amador's LEAP (PDF)
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Problem Solving
Families dealing with psychosis face many complex problems. Learning to solve problems in a straight-forward, systematic way is very helpful:
- Don’t put all your energy into problems. Give yourself a time and
place for problem solving, and a time and place for enjoying life.
- When selecting where to focus, always prioritize safety and well-being.
- Focus on only one problem at a time. If multiple people are
involved, try to create a shared understanding what the problem you are
addressing.
- Articulate the problem in terms of the person or people who
identified the problem, and no one else (for example, if you are upset
that your relative won’t leave his room, don’t define the problem as
“John won’t leave his room”, but in terms of what you can do. Why is a
problem to you? Are you afraid he’s not safe? Perhaps the problem would
be, “How can I feel reassured that John is safe?” Is it that you want
him to pay his way? Then the problem might be, “How can I get out of
the role of paying all of John’s expenses?” Or perhaps you think he
needs to move out- Then it might be, “What can I do to encourage John
to move to another place?” The key in defining the problem is to define
the problem in terms of your own feelings or choices, and never in
terms of what someone else is doing or chooses.
- It is helpful to do this process in a group. Multi-family groups
are especially helpful, because they include both you and your loved
one and can facilitate identifying a shared problem. NAMI
Family-to-Family support groups also use a similar structure. By
bringing a group into the process, you get a variety of ideas and
resources you might not have considered.
- Identify the problem in as behavioral, specific and concrete way
as possible. Try to narrow it down: why is this a problem, when is it a
problem, is there an aspect of the problem which is more important than
others.
- Brainstorm possible alternatives. At this stage, there is no
right or wrong answer. Write down all ideas, including wild or
impossible alternatives. These may help generate creative ideas.
- Think about similar situations in the past and what worked then.
- Choose which alternative you think is most likely to work and is most feasible for you.
- Make a specific plan for how you will implement the alternative (who, what, where and when).
- Identify 2-3 additional alternatives and work them through, either to do concurrently or as a back-up plan.
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Limit Setting
No matter how ill a person is, they still are able to control their
behavior to a certain degree. It is important to maintain certain
limits and to encourage responsibility to the degree the person is able.
EAST recommends the use of the written family guidelines [link to
family guidelines]. These guidelines, developed by Carol Anderson and
built upon by Dr. William McFarlane at the University of Maine, are
based on the experience of families and what is necessary to maintain
stability.
A few good rules can help create a more liveable situation and increases the person’s level of independence.
It is helpful to have a family agreement which everyone knows about, and, hopefully, has agreed to.
Some tips in developing a family agreement
- There is a baseline of behavior with no exceptions (example: no threats of violence, no weapons in the house).
- Supportive does not mean permissive.
- Before a family meeting, make sure heads of household agree on baseline behavior and priority issues to address.
- Choose no more than one to two key issues to address at a time.
Before selecting the issue, assess your family member’s ability to
address it. For example, if you want the person to begin paying rent,
they may or may not be in a place where they are able to work. It is
important to provide alternatives.
- Accept that your family member will not like the agreements.
- A draft copy should be given to all willing to participate, with
all parties giving feedback and ultimately agreeing to follow it.
- Everyone’s needs should be addressed.
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Partnering with Professionals
With few exceptions, families should be in regular communication with 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.
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Supporting Recovery
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.
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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 EAST, you can call the EAST 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 EAST Community Network 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 EAST are available in few communities. 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.
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