They did not show their disabilities caused by the disease. This made participants more introverted and reserved. F2 tended to drive the car on the center of the road.
M1 could not write letters when he was tired. M4 and M1 tended to have passive attitudes because of their fear of what may happen. If I shake my head strongly, moving stones would damage the tofu…Then I always try not to shake my head in my life. Most participants were concerned about the disease and tried to manage the situation.
M2 remarked he tried to forget the disease. In contrast, some participants tried to behave proactively. M2 and M4 were willing to have regular check-ups. M3 wanted to buy medical insurance before onset of the disease. They felt frustrated with the lack of medical information.
Basal ganglia dysfunction
M1 also wanted to get into an Internet communication forum. In contrast, F1 who had taken a part in a community for patients once before, was not interested in participating again because she found that others only talked about their concerns. M2 and M3 had mixed feelings: they wanted to talk about their situation with others, but not those with more severe symptoms. Perhaps my symptoms seem to be mild. This means that I would have to watch what I say.
Some participants changed their perspective on their lives after being diagnosed with a rare, intractable disease. M2 and M3 understood that the disease had derived from their mother but did not blame anyone for the disease. Some patients mentioned a desire for an improved medical system. For example, F2 had finally quit the job she had been reemployed in when she was injured by a toppling fall, and M1 was excluded from night shifts because of less achievement in his job.
Participants were also asked whether they had some questions for doctors. In particular, participants wanted to know the relationship between headaches and the disease, and about calcification of the blood vessels and in the brain. Qualitative studies have been performed for major diseases such as cancer Ziebland and McPherson , rheumatoid arthritis Hilton et al. However, relatively few quantitative studies have been conducted on rare diseases, especially cancers Griffiths et al.
This study revealed three key points.
They had similar thought processes, including anxiety about the clinical features and future progress of the disease, particularly about observing their mothers and relatives, after they were told that the disease was familial and hereditary. They worried about marriage and childbirth and were anxious about needing full care in the future. Their attitudes had become introverted and focused on keeping their good health and not causing trouble to surrounding people.
The Basal Ganglia - Direct - Indirect - Nuclei- TeachMeAnatomy
Second, their questions and worries about the disease changed throughout their experiences in dealing with the disease. In the early stages, they could not get enough information through books or the Internet to understand the disease, and wanted to obtain information directly from medical doctors. However, they were told they suffered from a disease with an unfamiliar name and were at a loss for adequate information. For example, one participant M1 thought he should not shake his head.
http://awocohozycuc.cf The more correct information participants received, the more positive their attitudes were. Gradually, they were able to change their attitudes about their disease to be more positive. Third, this study highlighted the psychological distress participants experienced because there is no medical cure for the disease. As they had been told that the disease was intractable, participants tended not to think about the disease.
This coping method was similar to the behavior of patients with neurological intractable diseases reported by Higaki and Suzuki In addition, one participant wanted the option of euthanasia because the disease was not curable and he felt that death was imminent. Although he wanted to live a significant life, he experienced agony about his death. Throughout the reported experiences of living with a familial intractable disease, we found some participants changed their minds about their lifestyles.
They realized that their lives were not only for themselves, and would undergo regular check-ups and pay more attention to their health for their spouses and families.
Kukinaka et al. Finally, this study has a key limitation. IBGC is a rare disease and the number of participants was therefore small. Generally, most patients with IBGC are sporadic and heterogeneous.
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We focused on genetically identified homogenous IBGC3. Although our conclusions are not meant to apply for all patients, those will be a foundation for the care of patients with IBGC or rare neurological diseases. Based on the present analysis, we identified three medical care proposals for patients with IBGC3. A genetic counseling and mental health support system should be established. Most patients with IBGC are worried about their genetic disease.
What is the general function of the basal ganglia? (2)
Patients with IBGC and their families need support from medical staff to overcome psychological difficulties. This may help patients and their families to develop their ability to control and manage their feelings.
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Medical staff could educate patients about methods to decrease anxiety. Monat and Lazarus reported that a combination of direct medical treatments and psychological and emotional treatments is more effective than one treatment alone. Medical staff should therefore support patients both practically and psychologically. In further discussion, the organization of genetic counselling deeply depends on how the health system is organized, reimbursed and how clinical genetics is integrated.
In the early stages, medical staff should offer regular check-ups and instructions to patients; this is particularly recommended to improve the medical care for patients with IBGC3. The participants in our study tended to associate with other patients. Hotta and Hozumi reported that counseling and supporting systems were most desired by solitary non-familial patients with IBGC. Unlike other diseases, patients with rare and intractable diseases may be widespread and find it difficult to get together. In this case, medical staff should establish a patient association meeting or similar organized community, and perhaps use online platforms such as social networking to provide opportunities for patients to share information, anxiety, and feelings.
This qualitative analysis of the narratives of patients with IBGC3 clarified their worries and attitudes towards their lives, the psychological changes that accompanied the progression of the disease, and their psychological distress as a result of insufficient medical information. We found that some patients were able to positively change their minds about living. This study also indicated a specific direction for the future medical care of patients with IBGC3. Clin Genet — Neurol Sci 32 4 — Caputo A Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories.
Psychol Health Med 19 2 Eur J Oncol Nurs 11 5 — Higaki Y, Suzuki M Suffering experiences of the patients with neurological intractable diseases. Qual Health Res — Clin Nurs — in Japanese. Neurogenetics — Disabil Health J 8 1 — Nat Genet — Kukinaka T, Nakagomi S, Kawasaki H et al Experiences of the living patients who had the preclinical diagnosis for hereditary neurological intractable diseases.
Jpn J Nurs Sci —50 in Japanese. Locock L, Ziebland S, Dumelow C Biographical disruption, abruption and repair in the context of motor neurone disease. Sociol Health Illn — Int Psychogeriatr 17 s1 :S—S Parkinsonism Rel Disord — Columbia University Press, Columbia. Health Inform J — Neurology — J Health Care Chaplain 21 1 — Sandelowski M Whatever happened to qualitative description?
Res Nurs Health — Accessed 12 Sep J Adv Nurs — Eur J Oncol Nurs 12 2 — Med Educ — Download references.