Exploration of Myasthenia Gravis Patients' Illness Experiences

• Main Authors: Yu-Tai Chen, 陳玉黛
• Other Authors: Fu-Jin Shih
• Format: Others
• Language: zh-TW
• Published: 2013
• Online Access: http://ndltd.ncl.edu.tw/handle/37538103923907554734

博士 === 國立陽明大學 === 護理學系 === 101 === Background Myasthenia gravis (MG) is a chronic, complex, autoimmune disorder in which antibodies destroy neuromuscular connections. This causes problems with communication between nerves and muscles, resulting in weakness of the skeletal muscles. The decreasing mortality rate of MG from 30-40% to 3-4% is due to the improvement of medical technology. One-third of MG patients were complicated by severe disabilities and among 90% patients of them are able to return to ordinary life. MG patients are living with chronic process, and struggling with terribly ungainly appearance, such as drooping eyelids, gaining weight or moon face. They also have difficulty brushing teeth or combing hairs as usual. While they unwilling to accept the reality of identifying the sick role, part of them fell into a state of profound melancholy. Various disabilities cause patients to lose their confidence in joining people, and have difficulty backing to ordinary life. Some general type myasthenic patients have invisible problems, seem they were lazy. They were eager to be understood. According to nursing responsibilities, we should provide safe and quality care. Nevertheless, although health care providers (HCP) witnessed MG patients’ struggling with physical, psychological, socail, and spiritual difficulties. HCP are often limited to deal with patients’ physical problems and needs due to heavy workload. They seldom spend time listening to their voices. Researcher was intent to take this opportunity focused on MG patients’ illness experiences, it was conducted by within method triangulation design including explorative qualitative research and narrative, to learn the whole process of their difficulties from the occurrence of first symptom till their adaptation. The research finding will be shared with HCP for better qualitive of patient care. Purposes 1. To recognize the stages of MG patients’illness experiences. 2. To recognize the core meanings of experiences across various stages in MG patients. 3. To identified the difficulties in different stages perceived by MG patients. 4. To learn how MG patients cope with their difficulties across various stages. Methods This study was conducted by within-method triangulation design including explorative qualitative research and narrative. A purposive sample was obtained from social services department of a medical center in Taipei. Researcher contacted the personnel of Taiwan MG Association to approach the first case. After a face-to-face interview, next case was therefore provided by way of snowballing until data was saturated. Data collection included two parts. The first part of quantitative data included age, education, type of MG, the year of diagnosis, kinds of treatment which was received, and current health status. They were analysed by descriptive statstics method. The second qualitative part of this research was the patient’s subjective experience from the occurrence of first MG symptom to receiving treatment, they were analysed by qualitative content analysis. Results The research was conducted between 2011 and 2012, enrolled 20 MG patients. All of 20 interviewees were diagnosed more than two years who were 10 males and 10 females respectively. The interviewee ages range from 30 to 62 years, with the mean age being 45.3 ± 9.1 years, the majority were 41-50 years (11, 55%). They were educated from high school to graduate school, the majority were granted a junior college diploma (7, 35%). 14 (70%) of them were married, 2 (10%) unmarried, and 4 (20%) divorced. Since the illness, 4 (20%) of them were early retirement or resignation, the rest of 16 patients still owned their careers,including insurance managers, brokers, accountants, etc. There was only one ocular myasthenia gravis patient, the rest of patients were generalized myasthenia gravis types. 11 (55%) of them are volunteers of MG support group. The age of onset, one (5%) was in his juvenile, one (5%) was in his adolescent, six (30%) were in aged 21-30, seven (35%) were in aged 31-40, and the other five (25%) were older than 41 years old. They suffered from myasthenia gravis around 5-33 years, with the mean year being 13.5 ± 7.3 years. seven (35%) patients had respiratory failure experiences. According to the protocol of treating myasthenia gravis, three (15%) of them were treated by two kinds of regimens, three (15%)of them were treated by three kinds, seven (35%) of them were treated by four kinds, seven of them were treated by five kinds, one (5%) were treated by seven kinds. All of them had taken Mestinon, 19 (95%) of them had taken steroids, 10 (50%) of them had taken immune suppressants, 16 (80%) of had received thymectomy, 15 (75%) had received plasmapheresis, one had received radiotherapy, and one (5%)had received immunoglobulin therapy. There were diverse treatment options in Taiwan for patients to chose. The participants of this research had received mixed medical treatments. 11 (55%) of them had received Chinese medicine (including acupuncture and chiropractic therapy), 10 (50%) had received folk remedies (including god-asking and Feng Shui), 7 (35%) attempted to control the disease by nutritional supplement (including Farinfrared beds). The current condition of participants of this study, three (15%) of them were total remission and stopped taking any medication, five (25%) of them being remission for a period of time, for some reason MG was recurrent, 12 (60%) of them kept on taking medication. 17 (85%) participants were still taking medication for controlling their symptoms, six (30%) were taking one kind of medicine only, eight (40%) were taking two kind, three (15%) were taking three kind. 17 (85%) participants were having various symptoms, eight (47%) were feeling fatigue, six (35%) were having oropharyngeal symptoms, six (35%) were having weakness of extremities, five (29%) were having ocular symptoms, three (15%) were suffering from respiratory symptoms, and one had head and neck symptoms. In addition to MG, seven (35%) participants had comorbidity, including two (25%) had uterine myoma, one (13%) had thyroid cancer, one (13%) had spleen tumor, one (13%) had lymphoma, and the other one (13%) was suspected lupus erythematosus. Furthermore, one has diabetes and cataract due to the side effect of steroids. This study aimed at exploring the experiences of MG patients, including their difficulties and how they cope with them. Qualitative data were catagorized into three stages with five major thematic experiences. The first stage was obscure stage-experienced of begging of transposition. The second stage was treatment stage-experienced of falling into the limbo, and experienced of struggling tangle in interpersonal. The third stage was adaptation stage-experienced of finding ways to stabilize their lives with illness, and experienced of reestablishing self-worth. Stage specific difficulties and coping strategies. Six major difficulties were encountered in the first obscure stage. They were: (1). suddenly encountering the first symptom of MG; (2). the inconveniences caused by symptoms; (3). failing to perform the function of diverse roles; (4). undergoing the complicted health-seeking process; (5). the fear of uncertain diagnosis; and (6). life threatening by fatal symptoms. Two themes of coping strategies, were reported application of social resources, and searching for related information of MG. After struggling with confirming the diagnosis process, they were stepping into the second treatment stage. Seven major difficulties of this stage were: (1). the inconveniences symptoms caused by symptoms; (2).the persecutions caused by treatment; (3). life threatening by fatal symptoms; (4). failing to perform the function of diverse roles; (5). depression caused by MG; (6). loss of sense of self-worth; (7). deterioration caused by mistakenly used folk remedies. Eight themes of coping strategies were practiced: (1). full compliance with regimen which prescribed by physicians; (2). application of social resources; (3). constructive attitudes to face illness; (4). expecting for health care providers’ empathy; (5). looking the capable physicians for treating MG; (6). expecting to control MG stably; (7). getting clear explanation about treatment plan of MG; and (8). gaining self-encouragement and learning self-care issues by reading. Under a period of the treatment, participants were gradually moving into the third adaptation stage. Only three cases in this study have completely alleviated from MG. Most of the participants (17, 85%) were still having various difficulties, they were: (1). the inconveniences caused by MG; (2).recurrence of MG or having new symptoms of it; (3). failing to perform the function of diverse roles; (4). depression caused by MG; (5). worrying about progression or recurrence; (6). social discrimination caused by MG; (7). deterioration caused by other non-myasthenic treatment; and (8). the complications by side effects of medications. Eight coping themes of strategies were reported in this stage. They were: (1). attributing to MG and trying to correct it for alleviating symptoms; (2). application of social resources; (3). accepting MG as a part of life; (4). redefining the value of life; (5). comparison of downward situation to comfort oneself; (6). adjusting medication by prescription; (7). seeking religious help; and (8). writing of illness. Conclusion MG patients experienced sudden onset of symptoms. Because of lack of typical symptoms, it takes time to confirm the diagnosis. The obscure process is not only full of uncertainty, but also be very tough. They collected information from websites and books in order to gain adequate treatment as soon as possible. Once the diagnosis is confirmed, patients are unwilling to face a chronic illness and are reluctant to take lifelong medication. They are actively or passively seeking alternative therapy instead and eventually face the consequences. In addition, the symptoms of MG could lead to various restrictions of physical, psychological, social, and spiritual functions. Patients feel like falling into the limbo. They seek for help in different ways, get help by support group and eventually overcome the difficulties. Only few of patients had complete remission, the majority of patients have been struggling with the disease. They eventually progress toward the adaptation stage. There are still 85% of the participants living with symptoms. In addition to keep taking medication, meanwhile, they are also learning to accept the remained symptoms. They are trying to convince themselves living with it, to reconstruct and to create their new self-worth. Living with MG are patients’ unshirkable responsibility. Their family and friends play important roles in supporting as well. Moreover, the peer support groups of MG could share their experiences one another and help provide information they need. The importance of support groups should be valued. In addition, the HCP ought to provide proper observation and care of physical, psychological, social and spiritual dimensions. If necessary, we should refer patient to support groups timely in order to facilitate the seamless care.