Illness as a social construct: understanding what asthma means to the patient to better treat the disease.

BACKGROUND: Improved medical outcomes and patient satisfaction with health care may not always result from effective interventions on disease. Asthma is increasing in prevalence, morbidity, and mortality, despite a revolution in medical technology. Patient-created illness narratives were used to move beyond the biomedical model of disease to understand the social forces at work on the patient's experience of illness and his or her responses to it.
METHODS: Children and adolescents with moderate to severe asthma used Video Intervention/Prevention Assessment (VIA) to create visual narratives of their experiences living with and managing asthma. The illness narratives included documentation of the patients' day-to-day lives and medical management, interviews of family and friends, and personal monologues of their thoughts and feelings. Narratives were coded for illness-related attitudes and behaviors. Emerging themes were identified using grounded theory and analyzed through the theoretical frameworks of medicine, psychology, clinical social work, and anthropology.
RESULTS: Visual narratives were created by 20 participants from 8 to 25 years of age and of diverse racial and ethnic backgrounds. The patients' illness responses varied, presenting in one or more psychological categories-disability, denial, self-comforting, and "specialness"--and in three distinct social domains-family/home, friends/school or work, and patient-clinician encounters.
CONCLUSIONS: Participants' visual narratives yielded a unique understanding of illness as a social construct. Patients with comparable disease states had different illness experiences, sometimes motivating health-related behaviors that appeared inconsistent with the management needs of the disease. Improvement in outcomes and patient satisfaction may be achieved through a broader understanding of illness in the social context of patients' lives.