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.
Subject
Parent and teenager
Life change events
Chronically ill adolescent
Chronically ill, psychological aspects
Permanent Link
http://digital.library.wisc.edu/1793/34316Description
A Clinical Paper Submitted in Partial Fulfillment of the Requirements for the Degree of Master of Science in Nursing - Family Nurse Practitioner
--University of Wisconsin-Oshkosh, 2008.