Video intervention/prevention assessment: a patient-centered methodology for understanding the adolescent illness experience

Abstract

Objective: To better understand the issues and needs of adolescents with chronic health conditions, the Video Intervention/Prevention Assessment (VIA) integrates video technology with qualitative research methods to obtain a patient-centered perspective on illness and health care. Methods: Young people with chronic disease are interviewed for condition-specific verbal reports (CSVRs) of their medical and psychosocial histories. Standardized health-related quality of life (HRQL) instruments are administered. Trained to use video camcorders, participants record visual narratives of their illness experiences. They document their daily lives, interview families and friends, and record personal monologues regarding their observations, behaviors, understandings, and beliefs about their disease. On completion of the visual narratives, HRQL is again evaluated. Verbal, scaled, and visual data are analyzed from three perspectives: medical, psychosocial, and anthropological. Data from the CSVRs, HRQLs, and visual narratives are triangulated to validate and enrich findings. Results: Investigating the illness experience from the adolescent patient’s perspective, the VIA method was pilot-tested with children and adolescents with asthma. As a research tool, VIA found environmental risk factors, medication adherence problems, and outcome-affecting illness beliefs and psychological states that were not identified by standard clinical tools. As an intervention, VIA showed that it may be an effective tool for health-related environmental surveys. Participants’ condition-specific quality of life showed measurable improvement after the self-examination process of VIA. As communication, VIA made apparently counterproductive patient behaviors understandable by showing them in context with the adolescent’s experience of illness and health care. VIA can enhance medical history-taking and management strategies, improve adolescents’ self-management skills, and educate clinicians, families, and students of the health care professions about the realities of the adolescent living with a chronic health condition.