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Oct 31, 2004
What Hurts / What Helps: A guide to what families of individuals with serious brain disorders need from mental health professionals.
Fifth Edition 2002
by Joyce Burland, Ph.D. (psychologist)

I have taken excerpts from this booklet which was written for resident psychiatrists and very beneficial for other mental health care professionals. Dr Burland writes: "It is offered in the spirit of hope that if we, as mental health professionals, have the courage to change, the revolution in care will at last be won."

What Hurts

  1. Families complain about staff who seem insensitive, impatient, unavailable, condescending or patronizing.....
  2. Families say professionals often make them feel blamed and stigmatized...
  3. Families of people with serious brain disorders object to traditional family therapy based on family systems theory, family dysfunction theory, communication deviance theory etc......
  4. 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....
  5. Above all, families feel ignored by professionals and left out of treatment planning....
  6. 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 behaviours families must cope with...
  7. Families worry that some professionals share society's disdain for people with brain disorders---that they too stereotype their clients and easily lose patients with them....

What Helps

  1. It is very helpful when the practitioner refrains from imposing his/her "therapeutic agenda" on families in crisis or pain...
  2. It helps when professionals seriously reexamine, and reject tradtional theories of family causation of brain disorders...
  3. It's helpful when professionals know how to assist families when they come in to talk about their concern for a relative suffering from a brain disorder...
  4. Family-member professionals agree that the framework of family "coping and adaption," and the strategies of secondary prevention, are by far the most helpful approaches in working with families of individuals with brain disorders...
  5. To be helpful professionals need to make a "secondary prevention scan" of families in distress, and plan interventions that will reduce strain in the entire family system....
  6. Compassionate theory and practical assessment lead to a new relationship between professionals and families--one of sharing information, professional validation of family interpretations, respect for family expertise on the illness of their family member, and mutual recognition of the benefits of a collaborative partnership...
  7. It is helpful to families when mental health professionals take a flexible attitude toward confidentiality and do not use this "patients right" to avoid contact with families and evade their legitimate questions and concerns....
  8. Families find it very helpful when a professional understands that their desire to remain connected as a family is normal--that it is an expression of loyalty and support rather than a conspiracy to keep the ill family member "dependent..."
Dr Burland further explains these introductions to each point above and their are a number of additional pages of practical advise and tips in this 6" 24 pg booklet. This booklet is available for $1.00 each and well worth the dollar investment!

Orders can be placed through: 703-524-7600 1-888-999-NAMI (6264)
What Hurts/What Helps
NAMI c/o Lynne Saunders
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22202-3042​
Additionaly, NAMI has a course for professionals which has been very well received.

NAMI Provider Education: Teaching Those Who Serve Us

The NAMI Provider Education Program presents a penetrating, subjective view of family and consumer experiences with serious mental illness to line staff at public agencies who work directly with people with severe and persistent brain disorders. The course helps providers realize the hardships that families and consumers endure and appreciate the courage and persistence it takes to find ways to reconstruct lives which must be lived, through no fault of the consumer or family, "on the verge."

The Provider Course emphasizes the involvement of consumers in the challenging work of provider-staff training. The teaching team consists of five people:

  • two family members trained as NAMI Family-to-Family Education Program teachers;
  • two consumers who are knowledgeable about their own mental illness, have a supportive relationship with their families, and are dedicated to the process of recovery; and
  • a mental health professional who is also a family member or consumer.
Few teaching programs employ consumers in this kind of sustained training effort in which they are paid to participate on a teaching team as they present a 10-week course.

The course reflects a new knowledge base, the "lived experiences" of coping with a brain disorder or caring for someone who struggles with this life-long challenge. Including this deeply personal perspective creates an appreciable difference in the program's content. It adds a means of teaching the emotional aspects and practical consequences of these illnesses to the academic medical information in the course.

In written evaluations and in focus-group surveys of their reactions to these classes, staff members reported that the course was fresh, relevant, helpful, enlightening, and emotionally overwhelming.

Participants felt that not only had their approach towards families changed, but that their understanding of consumers' dealing-with-life dilemmas had expanded as well. Almost every participant described how his or her own clinical practice had changed because of what was learned in class.

The NAMI Provider Education Program is currently being taught in thirteen states: Connecticut, Indiana, Kentucky, Minnesota, Missouri, New Jersey, North Carolina, Ohio, Pennsylvania, Rhode Island, Utah, Vermont, and Washington. Montana, South Carolina, Washington, DC and Wisconsin will be trained in the program this fall. For more information, contact Joyce Burland or Monique Lewis at the National NAMI office, at (703) 524-7600, or email joyce@nami.org to find out if the Provider Program is available in your area.


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