Before turning to this week’s topic, I want to call your attention to VideoCHADD, a brand-new feature on our Web site. This week VideoCHADD presents an interview with Karran Harper Royal, CHADD member and the mother of a teenaged son with AD/HD. We will add more film clips as we develop this feature in the coming months.
Communicating with Clinicians
The May issue of the Journal of Attention Disorders includes a new feature titled “Clinical Commentary,” written by professionals for professionals. Professionals describe a "clinical" case and other professionals react to the clinical description. The commentary suggests four recommendations for clinicians dealing with more complicated "cases" of AD/HD and possible co-occurring disorders. CHADD and several colleague family organizations have been attempting for several years to convince professionals to humanize the way they view people with possible disorders. We prefer to be called people, rather than "cases."
Despite some sensitivity to the journal's terminology, the four recommendations are right on the money. Family members need to be aware of these recommendations, and maybe even remind some professionals of these recommendations, if not practiced. The four are:
1. Be patient and do not rush to judgment on assigning diagnoses.
2. Instill hope.
3. Clarify goals and prioritize interventions.
4. Monitor treatment closely and carefully and make adjustments as necessary.
The first recommendation advocates professional "understanding" of the person and getting the diagnosis correct. The second emphasizes the role of the professional in promoting hope to the "patient" and their family, so they understand and can successfully deal with the disorder. The third is the need to prioritize treatment interventions. The fourth documents the need to constantly monitor for changes—both negative and positive. As the father of a son with the inattentive form of AD/HD and co-occurring challenges, I found these recommendations very helpful. (See Kevin Murphy, "Reactions to Our Experts' Commentary on the Case of Sally," Journal of Attention Disorders, May 2007, page 42.)
Consumers Weighing the Evidence
CHADD is a member of the National Working Group on Evidence-Based Health Care, which was organized by Mental Health America.
On April 19, the working group conducted a forum on "Nothing About Us Without Us: Patient/Consumer Participation in Evidence-Based Health Care." The forum’s advocacy agenda highlighted the need to include patients and consumers in all parts of the development, review, and dissemination of evidence-based knowledge of health treatments, technologies, and services. It is the patient-consumer and his or her family who must implement the treatments recommended by clinicians. If the clinician is aloof and merely preaches, the odds of implementation are greatly reduced. If the researcher does not involve the consumer in the research design, the design may not work for persons with disorders in the real world. If the professionals do not involve the consumer in disseminating the information, it may be written in a form that the consumer can not understand. There must be collaboration, respect, and communication for treatments to be successful. It is the responsibility of researchers and clinicians to fully prepare patients-consumers and their families to participate in the process. This takes time and patience on the part of all participants. Part of this communication process means that patients-consumers receive complete information about benefits, risks, and possible unknown consequences of the possible interventions.
Role of Conferences and Support Groups
Skills in and experiences with communication between professionals and consumers and their families are learned and increased at the CHADD annual conference and the monthly support groups organized by many CHADD chapters.
We all want competent professionals who understand the latest knowledge about the science. But an important element in selecting and staying with a professional is comfortable and respectful communication. Many families will schedule an appointment to literally interview the professional about his or her knowledge and communication style. Frequently, health insurance will not reimburse for this initial interview process unless the consumer and family ultimately choose the professional. But such an interview can be a very valuable investment in the future. CHADD support groups offer an opportunity to discuss these professionals in an informal person-to-person dialogue.
I wish you success in locating and maintaining such professional relationships.