An Interpretative Phenomenological Analysis of People with Autoimmune Disorders: A Generational Exploration
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Authors
Dunwell, Erin
Issue Date
2013
Type
Thesis
Language
en
Keywords
Alternative Title
Abstract
The Office of Women's Health, U.S. Department of Health and Human Services (2010) reported that overall autoimmune diseases are common, affecting more than 23.5 million Americans. They are a leading cause of death and disability. Some autoimmune diseases are rare, while others, such as Hashimoto's disease, affect many people. Autoimmune diseases can affect anyone, but certain people are at greater risk, including women of childbearing age, those with a family history, exposure to environmental factors, and people of certain races and ethnic backgrounds. Through an understanding of people's experiences, we are able to create more effective modes of treatment, determine the type of tools that are needed, and pinpoint where education and training need to take place in the healthcare system. Suffering from an autoimmune disorder can be as individual as a fingerprint. Although they have common variables such as fatigue, pain, and loss of ability, how each person experiences the disease is influenced by his/her environment. Having a disorder can be very frustrating as there is still an elusive link between cause and effect in autoimmune disorders. They are often misperceived as other conditions such as depression, malingering, fictitious or somatic behaviors, and/or other diseases. Autoimmune disorders are not very well understood and are not the first thing that comes to a practitioner's mind. Patients can go months and even years without a diagnosis. This can be very costly and detrimental to the person's mental and physical health. Therefore, it is essential to understand the individuals' experiences to note what they have in common, what they experience individually, and how it has affected their lives in both positive and negative ways.
This study explored the lives of people who have suffered from autoimmune disorders and the ways in which it has affected them using an Interpretative Phenomenological Analysis (IPA), a qualitative technique used to obtain personal accounts and subjective experiences. The aim of IPA is to explore in detail individual, personal and lived experiences in order to examine how participants are making sense of their personal and social world (Lyons & Coyle, 2007). Results from this study showed participants with autoimmune disorders who received less support experienced more distress and difficulty with their disorder. The lack of adequate support from medical providers and limited resources correlated with a higher degree of suffering. This also correlated with an increase in emergency care services and frequent doctor's visits. Additionally, participants tried a variety of treatments from working with a homeopathic doctor, chiropractor, acupuncture, naturopathic, Vedic therapies (an ancient Indian philosophy that involves aligning a person's biorhythms with nature, it includes yoga, massage, and various use of oils), and therapy (mental health) which resulted in high cost and limited effectiveness due to a lack of cohesion and support in treatment application. Those who suffer from an autoimmune disorder would function more effectively if they were sufficiently supported by their families, community, and medical providers. Lack of training and cohesiveness in the medical and mental health fields leads to an inability to provide adequate services necessary for optimal functioning. Additionally, the way in which we view autoimmune disorders as separate from one another only serves to limit services available to a wider population. Instead of services provided for a specific type of autoimmune disorder, such as Lupus, services should be offered under the umbrella of autoimmune. There are eighty to one hundred different kinds of autoimmune disorders and individuals with rare disorders get little to no services even though they all share common clinical issues such as fatigue and loss. Instead of looking at the specific type of disorder they suffer from, listing it as autoimmune could provide practitioners with the format for a cohesive form of treatment. Additionally, by creating an all-encompassing definition of autoimmune funding sources could be focused on research, services and education for a wide range of people.