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What
Hurts Families of Individuals with Brain Disorders
A
Guide to What Families of Individuals with Serious Brain Disorders Need from
Mental Health Professionals
By Joyce Burland, Ph.D., Director NAMI Family-to-Family Education Program
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Families complain about staff who seem impatient,
insensitive, available, judgmental, condescending or patronizing.
Many families report that they experience hostility from mental
health professionals; others say that they are made to feel
"invisible", and that their concerns are somehow considered
illegitimate. Families
particularly object to being "talked down to" by clinic
administrators and psychiatrists. These
attitudes make families feel humiliated, angry, defensive, confused and
frustrated.
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Families say professionals often make them feel blamed
and stigmatized. Many
professionals convey the message that the family has caused, or is
continuing to generate illness in a family member.
Mothers and wives are routinely perceived as "domineering",
"rejecting", "intrusive", or sabotaging" the
treatment of their stricken family members.
These attitudes make families feel guilty and ashamed.
In response to stated family needs to find ways to restore
connection, many professionals prescribe autonomy and independence as the
"proper" posture for individuals with brain disorders.
Families feel their good intentions appear suspect, and their
forbearance and loyalty remain unnoticed.
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Families of people with serious brain disorders object
to traditional family therapy based on family systems theory, family
"dysfunction" theory, communication deviance theory, etc.
They complain that the therapy agenda has nothing to do with their
own perceived needs for guidance and support.
They feel enormous distress at being made to feel that they are
"part of the problem", or that the ill family member's symptoms
are "useful" in sustaining family dysfunction.
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Families report that traditional family therapy often
causes the ill family member to identify them as "perpetrators"
and to turn against them. In this way family therapy colludes with the patient's denial
of illness. This outcome can
irreparably damage family relationships and compromise the family support
system.
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Families can't comprehend why some professionals seem
blind to their pain, their genuine grief and their anxious worry about a
gravely disabled family member. They
say it is difficult to find a professional who offers genuine comfort under
such circumstances, or who understands the utter devastation that they feel.
Professional insensitivity about their emotional distress adds to the
family experience of isolation and rejection in times of crisis.
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Above all, families feel ignored by professionals and
left out of treatment planning.They are critical of how professionals refuse
to communicate with them, are unavailable in times of crisis, and decline to
give them vital information about the ill family member's condition which
would help them understand and cope with the illness.
Families relate how disturbing it is to seek information and support
and be met with avoidance or recrimination.
Families are particularly frustrated when professionals invoke
confidentiality to avoid talking with them, or are inflexibly opposed to
family collaboration, second opinions, and utilizing supportive resources
outside the system.
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Families often complain that mental health workers are
not given specific training in a collaborative model of care, nor are they
well-educated about the biological bases of mental illness and the residual
illness behaviors families must cope with.
It is exasperating for families to try to work with mental health
professionals who cannot speak the language of serious brain disorders that
families are intimately familiar with symptoms, prodromal warning signs,
relapse, physical exhaustion, lack of motivation, medications and side
effects, treatment resistance and non-compliance.
Families say that their reality and the professional attitudes of
mental health workers are worlds apart, that it is almost impossible to
communicate family needs in the absence of any kind of shared understanding.
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Families worry that some professionals share
society’s disdain for people with brain disorders that they too stereotype
their clients and easily lose patience with them.
Families express fear that if their family members don’t conform
the way the system wants them to; the system begins to retaliate and
withdraw support. Families say
that they fear reprisals if they criticize or protest clinic policies, and
that they are often branded as “troublemakers” when they express
objections.
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