How are the patients and/or parents inlucded as stakeholders? Are they inlcuded in the development of protocols? How are results disseminated following the studies?
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On a clinical basis, each
On a clinical basis, each parent and patient are considered the "main stakeholders" in the management of a patient's asthma. They are the "main actors on the stage." Clinicians and asthma counselors need to take into account all of the parent's and patient's concerns, whether CHAMPS related or not, to be effective in working together to control the patient's asthma.
In our early inner-city
In our early inner-city studies (NCICAS) we held focus groups with the families to get their input in the protocol development and other aspects of the studies. For example, we had planned to call the interventionists "Asthma Case Managers". The families didn't like that name since "Case Manager" had a rather negative, evaluative tone. They suggested Asthma Counselor.instead.
We have published widely in peer-reviewed journals, as well as presentations given at local and national meetings. For example, this March we will be presenting additional CHAMPS information at the AAAAI American Academy of Allergy Asthma and Immunology meetings in Los Angeles.
With children spending 1/3 of
With children spending 1/3 of their time in school, shouldn't school nurses, teachers, coaches, and day care workers also be stakeholders? They are managing our childrens' asthma until they are able to do so for themselves.
At our school district, we
At our school district, we consider school nurses, teachers, coaches to be stakeholders. We offer Asthma 101 training to teachers via an online course that provides continuing education credits for teachers.
Great point! We are
Great point! We are currrently involved in school based interventions in bot Denver and Hartford. There have been a number of excellent school interventions and unfortunately they have not been integrated into the inner-city interventions.
School nurses, teachers and coaches are very important players in this effort to manage asthma effectively. I will make certain this reaches the attention of those in the academy working on asthma interventions.
At El Rio we often made 2
At El Rio we often made 2 copies of the Asthma Action Plan, one for home and one for school. The Asthma Action Plan was useful for the parents at home for reinforcing the critical need for compliance with use of controller medications, even when a patient looked well. For both the school and the home the Asthma Action Plan guided parents and teachers as to how to respond when a patient was having difficulties.