Living with Obstructive Sleep Apnea

Obstructive sleep apnea (OSA) affects a large and growing segment of the adult population. While effective treatment is available, lack of adherence to prescribed therapy is a serious challenge. Untreated, OSA can lead to serious health consequences that shorten life span and diminish quality of life. The purposes of this study were to identify barriers to effective treatment, self-management, and adherence to treatment; to identify effective strategies for self management; and to construct a Grounded Theory reflecting the experiences of participants as a basis for effective interventions.  A diverse group of 80 adults at all stages of the OSA experience were recruited and in depth interviews conducted using face to face, telephone, and internet modalities.  Data were analyzed to identify elements of the experience consistent with self management as well as to illustrate theoretically the overall experience of living with OSA. The experience of living with OSA was found to be a struggle to “break through the limbo” that resulted from constant battle with unknowns related to lack of knowledge, delayed diagnosis, lack of follow-up, and an ongoing struggle to adhere to treatment. A tendency toward “one size fits all” treatment was reported coupled with a lack of the affected individuals’ involvement in care that led to frustration and poor adherence to prescribed treatment. Lack of follow-up care and education to deal with the challenges of treatment led to information seeking, often with ineffective results and inappropriate attempts to self-manage. Results provide insights into self-management of chronic conditions and, specifically, a more complete understanding of the experience of living with OSA from the pre-diagnosis through treatment phase.  Participants varied in their desire for involvement in their care raising questions about ways to determine levels and types of self-management that are reasonable across individuals.