Personal Impact Paper
Donna Ballard, RN
University of Phoenix
Nur/427
Carolyn Diaz, MSN

“Chronic illness is the irreversible presence, accumulation, or latency of disease states or impairment that involve the total human environment for supportive care and self-care, maintenance of function and prevention of further disability” (Curtin and Lubkin, 1995, pp. 6-7).
Once a person is diagnosed with a chronic disease their lifestyle changes completely. The purpose of this assignment is to research the personal impact of a patient living with a chronic disease. I will discuss how the life style of this patient changed completely from being an active super model and independent to be dependent on her family. I will discuss the social, financial and personal effects that has incurred with this patient. I will also discuss how the patient learned about her disease, educational experience, and motivators the patient used in learning about her disease. (Towner & Inter-mountain Healthcare,Utah,USA, 2008).
Sonya D is middle aged African American woman whom had a career as a super model; until she was diagnosed with Lupus. A married woman and mother of a teenager, she enjoyed walking and spending family time with her spouse and daughter. Patient is not obese, non-smoker and non-alcoholic. She had been extremely tired and in bed a lot. She noticed her extremities going numb and went to the doctor for a physical, not expecting to hear the diagnosis of Lupus.
Lupus is an autoimmune disease in which the immune system produces antibodies to cells within the body. This leads to widespread inflammation and tissue damage. Researchers believe it is linked to genetic, environmental, and hormonal factors. Lupus may be characterized by periods of illness and remissions. Lupus has a variety of clinical manifestations and can affect joints, skin, brain, lungs, kidneys, and blood vessels. People who have been diagnosed with Lupus may experience fatigue, pain, or swelling in joints, skin rashes, and fevers (Centers for Disease Control, Definition of Lupus, July, 22, 2014, paragraph 1).
There are social, financial, and personal effects caused by this disease. Sonya D was a super model and could not bear weight so she had to quit modeling, her hair began falling out and as a model this was devastating to herself image. Financially her husband had to work two jobs which took him away from the family at long intervals. Her teenage daughter began taking care of her until one day when she fell out of the wheel chair and her daughter was not strong enough to lift her up. They had to call 911 for assistance which resulted in a trip to the hospital. During that admission, the doctor told her that now she has CNS Lupus or Multiple Sclerosis. Sonya D. stated “The prognosis is poor with the worse possible outcome. I feel like the doctor thinks I’m taking up his time”. After that admission she began to do some research on her own to understand more about the progression of this disease. She began a blog called “Diary of a Sick Chick”, which tracks her prognosis on the internet. Recently Sonya D. has not been able to write on her blog because now her hands are painful and numb. She is a very strong willed individual whom is not letting this disease take away from her family time. Since she no longer can walk she uses a wheelchair because it is important for her to get out and not be isolated. She enjoys shopping at the mall with her daughter. She also went out and bought a wig to improve herself image. Sonya D’s motivation to learn came from her daughter and the desire to learn everything she could about Lupus. She has maintained a positive attitude due to an excellent support system from family and friends.
In conclusion, the cognitive representation of a disease is the ideas and beliefs that patients have in relation to their condition, at a given time. These ideas are based around five aspects: symptoms, causes, impact of the disease on patients’ lives, way and measures for controlling the condition, time-line and progression of the disease. Cognitive representation is said to be based on “common sense”, since patients are not experts and their ideas and perception of their disease are based on their own experience, self-knowledge and other sources (social, family, environment, health center etc). The researchers state that “the idea that patients have of their disease affects their own coping and adaptation to it” (The impact of chronic diseases on patients, October 21, 2010, paragraph 3 and 4).
The number of people with chronic diseases continues to rise. Patient education of self-care is an integral component of nursing care. Promoting self-care through education is vital for patients with chronic illnesses. Day to day decision making has a tremendous impact on health. Giving a patient the tools to be successful through education allows the patient to make informed decisions based on individualized outcomes.
Teaching patients about their disease process and prevention is necessary and is incorporated in bedside nursing care. Most immunological diseases can be self-managed; therefore education and effective problem solving are important to facilitate that day to day management of their illness. In the hospital, survival skills focus on content that promotes safe patient discharge. Emphasis is usually aimed at symptom management and medication administration. Also is focused on content and skills that minimize adverse events and re-hospitalization. Until patient can participate in a self-management education program continued education should be provided either as an inpatient or in an outpatient setting.
This can all be achieved through a complete learning assessment using Blooms Taxonomy. Identification of the patient’s willingness to learn, readiness to learn and involving their support system creates a learning atmosphere conducive to the patient as well as their support system. It is important that all those involved in caring for the patient and providing emotional support understand the process and outcomes of the disease.
In the case of Sonya D. she was ready to learn, and had a good support system. In my opinion the healthcare provider failed to provide her with the tools and resources to be successful. She had the willingness and desire to educate herself about the disease, with hopes of a positive outcome. Once she was able to cope with her diagnosis, the rest followed. Creating a blog allowed her to vent her frustrations and gave her a support system she never knew she would have.

References:
Lupus Foundation of America (http://www.lupus.org) www.cdc.gov.org Lifestyle diseases-impact and interventions (http://www.addresshealth.com/thought)
Towner, S., & Inter-mountain Healthcare, Utah,USA, . (2008, Winter). Chronic Disease management at Intermountain Healthcare. Frontiers of Health Journal Management, 25(2), 3-14.
Curtin and Lubkin, 1995, pp. 6-7). www.medicaldaily.com www.brightsurf.com