Asthma

Visual illness narratives for the pilot study that first implemented VIA were collected between 1995 and 1997. Michael Rich worked closely with Steven Lamola, the first research coordinator for VIA, and Richard Chalfen, a visual anthropologist, to develop and refine VIA data collection methods. 24 participants between eight and 25 years old created visual illness narratives of their lives with moderate or severe asthma, producing a total of 489 hours of video. Each participant created a visual illness narrative of four to 78 (median 22) hours in length. These visual narratives were analyzed by logging the video on paper and organizing the data both manually and with qualitative analysis software (ATLAS.ti). "Round table" discussions among Michael Rich, Richard Chalfen, Steven Lamola, the loggers, and clinical social workers who worked with pediatric asthma patients used grounded theory and other qualitative analysis techniques to discover, develop, and refine the findings. (see “Showing and telling asthma: Children teaching physicians with visual narrative" and "Video Intervention/Prevention Assessment: A patient-centered methodology for understanding the adolescent illness experience”)

VIA - Asthma yielded rich data about the lives of young people living with and trying to manage asthma, much of it previously inaccessible to traditional research techniques. All of the participants obtained primary and specialty care at a tertiary care hospital or one of its neighborhood health centers. Despite multiple comprehensive medical histories and many hours of education regarding medications and their proper use, VIA revealed that 95% of the participants were exposed to known asthma triggers that were not discovered using a standard-of-care medical history. Inappropriate use of medications was found in 83% of participants: 33% exceeded prescribed doses, 28% discontinued medications without consulting a clinician, and 72% used ineffective inhaler technique. (see Asthma in life context: Video Intervention/Prevention Assessment (VIA)) Clinician-patient communication, participants' adherence to medical plans, and health outcomes were found to be affected by differences between the patient's experience of illness and the clinician's focus on the biomedical concept of disease. (see Illness as a social construct: Understanding what asthma means to the patient to treat the disease) VIA - Asthma participants were administered previously validated asthma-specific quality of life scales, twice before and once immediately after making their VIA visual narratives, but before either investigators or participants viewed or responded to the video data.

Although there was no measurable change before VIA, participants showed a significant improvement in their asthma-specific quality of life after making their visual narratives. These findings have been presented to the national meeting of the Society for Adolescent Medicine (see Asthma quality of life: Video Intervention/ Prevention Assessment (VIA) as intervention) and the paper has been accepted for publication. Papers that detail variations in participants' explanatory models of asthma and its management (see Explanatory models of asthma: Are beliefs about management more important than knowledge of disease? and Visual illness narratives of asthma: Explanatory models and health-related behavior) and explore participants' psychological responses to living with asthma, isolation from their peers, body dysphoria, depression, conflictual relationships with medical care, and fear of sudden death (see Video Intervention/Prevention Assessment (VIA): An innovative methodology for understanding the adolescent illness experience) have also been published. The data from VIA - Asthma are rich with hitherto inaccessible information on young people's everyday lives with asthma. These data continue to be analyzed and are available for analysis by other investigators. Please contact us if you are interested in being trained in VIA in order to use our method for primary research or our data for secondary analysis.

The VIA method and the results of the VIA – Asthma study have been presented to audiences around the world. VIA - Asthma has received considerable press coverage, including a five minute segment on ABC World News Tonight which aired December 16, 2000, and local news coverage on WHDH-TV, March 17, 2000. VIA - Asthma has been covered in various print media, including The Atlantic Monthly, Fast Company, and Harvard Magazine.

VIA - Asthma was made possible by grant funding received from The Arthur Vining Davis Foundations, The Deborah Munroe Noonan Memorial Fund, and the John W. Alden Trust.







Publications
View Chalfen, R., & Rich, M. (2004). Applying visual research: Patients teaching physicians about asthma through visual illness narratives. Visual Anthropology Review, 20(1).
View Rich, M., Patashnick, J. L., & Chalfen, R. (2002). Visual illness narratives of asthma: Explanatory models and health-related behavior. American Journal of Health Behavior, 26(6), 442-453.
  Rich, M., Ruth, A. L., & Chalfen, R. (2000). Explanatory models of asthma: Are beliefs about management more important than knowledge of disease? [abstract]. Journal of Adolescent Health, 26(2), 101.
  Rich, M., Taylor, S. A., & Chalfen, R. (2000). Illness as a social construct: Understanding what asthma means to the patient to better treat the disease. Joint Commission Journal of Quality Improvement, 26(5), 244-253.
View Rich, M., Lamola, S., Amory, C., & Schneider, L. (2000). Asthma in life context: Video intervention/prevention assessment (via). Pediatrics, 105(3 Pt 1), 469 - 477.
View Rich, M., Lamola, S., Gordon, J., & Chalfen, R. (2000). Video intervention/prevention assessment: A patient-centered methodology for understanding the adolescent illness experience. Journal of Adolescent Health, 27(3), 155-165.
View Rich, M., & Chalfen, R. (1999). Showing and telling asthma: Children teaching physicians with visual narratives. Visual Sociology, 14, 51-71.
  Rich, M., Lamola, S., & Woods, E. R. (1999). Quality of life with asthma: Video intervention/prevention assessment (via) as intervention [abstract]. Journal of Adolescent Health, 24(2), 151.

Press




A boy with asthma
interviews his friend
>> Watch video


Going to the hospital
during an asthma attack
>> Watch video


A participant’s emotional
talk with her mom
>> Watch video

Requires Quicktime 7

Researchers
Core Staff:
Michael Rich
Steven Lamola
Jason Gordon
Richard Chalfen

Other Staff:
Vicky Wright

Related Links
>> Method
>> Training
 
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