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The data were codified, classified, and categorized by three independent researchers in order to avoid bias. The final categorization was reviewed by a fourth researcher in order to resolve cases where categorizations did not coincide.
The domains included on the questionnaire PDQ were adopted as a priori categories and the difficulties described by patients and strategies to overcome them in each case were adopted as subcategories. The difficulties mentioned by patients were compared with those considered on PDQ The study followed the international guidelines delineated in the Declaration of Helsinki and the Belmont report.
Results In relation to Mobility, patients mentioned the following matters as responsible for diminished quality of life: In the domain of Daily living activities, patients said that their quality of life was compromised by difficulty writing, the frequency with which they broke dishes, difficulty brushing teeth, shaving, bathing, and combing their hair, difficulty cutting food, inability to drink liquid from a full container, inability to drive a car, and slowness in fastening their pants.
The patients mentioned that both their mobility and their daily activities were more compromised at the beginning of the day, and that some symptoms were more intense on some days than on others.
Some strategies used by patients to overcome these limitations included using an electric toothbrush, eating foods whose consumption did not require the use of fine motor skills, driving automatic cars, and receiving help from friends and family. In the domain Emotional well-being, patients said that the following problems compromised their quality of life: Some of the strategies mentioned by patients for alleviating their emotional suffering were talking about the disease, engaging in pleasurable activities, and talking to other people who also had the disease.
One important point is that patients perceived that engaging in physical activity improved their mobility, their ability to carry out daily activities, and their emotional well-being. In the domain of Stigma, the patients said that they were embarrassed to eat in public and angry that they had the disease. Some, however, mentioned the ease with which they could speak openly about the disease. In the domain of Social support, support and acceptance by families and participation in communities and support groups were mentioned as important tools for improving quality of life.
It was observed, however, that some focus group participants resisted participating in support groups. In the domain of Cognition, patients mentioned forgetfulness and reasoning difficulties as problems present in their day-to-day lives. In the domain of Communication, patients referred to slow and difficult speech, leading to poor diction, mangled words, breathy voices, and hoarseness.
In the domain of Bodily discomfort, patients mentioned cramps, cold extremities, body pain, and heavy feet as aspects of discomfort that affected them on a daily basis.
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Pain locations varied among the patients, and included waists, arms, and joints. Pain was most common in the evening and at night. One strategy used to alleviate this kind of pain was the use of hot compresses. Most of the items present on PDQ were recognized by the participants as factors related to quality of life. Not mentioned were difficulty tying shoes, being at home longer than desired, having to concentrate to watch television or read, or having disturbing dreams or nightmares.
Table 3 presents excerpts that exemplify the problems identified by participants as compromising their quality of life, according to the categories mentioned on PDQ, as well as the strategies they used to overcome them.
Table 3 Direct quotes in each domain Table 3 Cont. Direct quotes in each domain Table 3 Cont. Within the domains mentioned on the PDQ, patients mentioned limitations on mobility and difficulty carrying out daily activities as a result of motor symptoms as the principal aspects that negatively influenced their perceptions of quality of life.
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Participants also emphasized their emotional well-being. Emotional and social factors affect their disabilities, daily limitations, and perceived stigma Patients perceived non-motor symptoms and their relation to motor symptoms, identifying them as responsible for the decreasing quality of life. This effect has been reported previously by Montel, Bonnet, and Bungener Some symptoms described by patients are associated with depression, such as moodiness, irritability, anguish, and despondency.
Depression negatively influences other physical and cognitive symptoms, indirectly contributing to social isolation 27 In relation to social support, it was found that family support is important in order to confront difficulties that arise in daily life.
Brazilian society considers the family to be a socially important unit for caring for the ill, and families have their own point of view on health and illness, their own attitudes, and their own way of providing care Family dynamics change when a member falls ill and enters into a process of increasing dependency, and family roles change when one member in particular is designated as responsible for the care of the ill person In our society, women assume the role of caregivers when another member of the family is ill 31 When women need care, however, they cannot always count on getting the support they need, which is emotionally difficult for them According to Sluzki, there is strong evidence that stable, sensitive, active, and reliable social networks protect people from other illnesses, provide support and guidance, positively impact on the timely and appropriate utilization of health services, accelerate recovery, and improve survival rates That is to say, they generate health.
In the same way that the health of an individual can be affected by their social relations, the presence of a disease, especially a chronic or debilitating one, detracts from the quality of social interactions, and, in the long-term, reduces access to social networks The social support provided by these groups provides a tool for mutual assistance, the exchange of information, support at times of crisis, and participation in social events, all of which impedes the isolation of patients, thereby improving the state of their health 35 The responses of participants verify that this stigma is associated with their own denial and rejection of the disease.
Support groups are even more important for these individuals and their participation should be incentivized by all healthcare professionals with whom they come into contact. Body pain, cramps, and cold extremities were felt on a daily basis.
The discomfort is associated with motor symptoms, especially akinesia and rigidity The results of this study also demonstrate that patients play an active role in the process of health and illness and generate particular strategies to live with their disease and overcome the difficulties that arise as it progresses.
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This effect has been verified in other studies, which suggest that physical activity is a promising adjuvant treatment for alleviating motor symptoms as well as non-motor symptoms including mood disorders, cognitive effects, and sleep disorders 38 The results of the study also point to certain limitations of the PDQ as a tool for evaluating quality of life. Other questions regarding the validity of the PDQ for measuring effects within this domain have been studied previously Also of interest was that some items on the PDQ were not mentioned by participants as matters that determined quality of life.
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