The lived experience of young adults with chronic illness

Abstract

Young adulthood is traditionally a time of self-discovery, career establishment, and developing relationships and family. It is this time in life that some specific chronic and debilitating illnesses are diagnosed. Autoimmune disorders such as multiple sclerosis (MS), rheumatoid arthritis (RA), psoriatic arthritis (PsA), and systemic lupus erythematosus (SLE) are most commonly diagnosed between the ages of 20 and 40. Though treatments are advancing, there is no cure for these diseases. A discussion of treatment of these illnesses as well as the future of those affected by them is imperative. People are generally fearful of the unknown and the ability to converse openly with healthcare providers about illness can be empowering and comforting for young adults with unknown futures. The purpose of this study was to describe the lived experience of young adults who have been diagnosed with a chronic illness. The research question was: What is the lived experience of young adults with chronic illness? Parse's Theory of Human Becoming was used as a theoretical framework for the study, as it provided a foundation for investigating the lived experience. A qualitative, descriptive, phenpmenological approach was used to study the lived experience of young adults with chronic illness. The five participants for the sample were selected using a convenience and snowball sampling method. The population for the study was young adults (between the ages of 20 and 40) with a chronic illness, living in a Midwestern state. After process consent was obtained and demographic data were collected, a tape-recorded interview took place. The taperecorded interview was transcribed verbatim and analyzed using Spiegelberg's method of analysis. The goa! of analysis was to find common categories and themes in young adults with chronic illness. Analysis of the data led to the identification of the overwhelming hope and optimism experienced by young adults with a chronic illness. Three themes were identified to describe this experience: (a) what happened? (past); (b) what now? (present); and (c) what next? (future). Additionally, nine subthemes were identified. After initial feelings of denial and disbelief at the thought of chronic illness diagnosis prior to age 40, acceptance and perseverance caused the participants to press on and reach for goals that may have been set prior to the disease onset. Some participants made accommodations or adjustments regarding activities and lifestyle. The optimism caused acceptance of the need for lifelong medication use. Participants also accepted responsibility for their health and future.