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Wyświetlanie 1-4 z 4
Tytuł:
COGNITIVE FUNCTIONING AND AUTONOMY OF PATIENTS WITH DUCHENNE MUSCULAR DYSTROPHY
Autorzy:
Anikiej, Paulina
Mański, Arkadiusz
Bidzan, Mariola
Powiązania:
https://bibliotekanauki.pl/articles/2137737.pdf
Data publikacji:
2018-05-08
Wydawca:
Fundacja Edukacji Medycznej, Promocji Zdrowia, Sztuki i Kultury Ars Medica
Tematy:
rare disease
attention
memory
executive functions
Opis:
Cognitive problems and a deepening dependence on one’s immediate environment inherently accompany Duchenne Muscular Dystrophy (DMD). The disease is progressive, and the size of the dystrophin gene determines the extraordinary complexity of the causes of this disease at the genetic and molecular level. The aim of the study was to characterize the cognitive problems and the extent of independence of patients with genetically confirmed DMD. An attempt was also made to reconstruct the patient's life history in three periods: before the appearance of the first symptoms, during the search for a diagnosis and after confirming the diagnosis of DMD. The study group consisted of male patients between 10 and 13 years of age (N = 14). The Diagnosis of Cognitive Functions Battery - PU1 and an experimental tool for studying autonomy were used. Information on the condition of the attention, memory and executive functions of patients was obtained. The study of autonomy measurably supplemented knowledge in terms of the degree of the patients’ dependence on the environment with regard to everyday functioning. The best functioning component of attention in the examined patients is orientation (o) (13 patients achieved average results in this aspect). Selectivity (s) turned out to be the weakest component, as only five patients obtained average results (the others obtained low results) in this aspect. Autonomy results (AU) indicate group diversity and inter-subject variability in the disease progression (subjects scored from 6 to 47 points). The clinical picture of the disease is not homogeneous. Patients, despite their similar age, differ in the progression of the disease and the resulting effects. This induces the need for an individual approach to each patient and the preparation of a unique set of therapeutic interactions for each of them.
Źródło:
Acta Neuropsychologica; 2018, 16(2); 157-166
1730-7503
2084-4298
Pojawia się w:
Acta Neuropsychologica
Dostawca treści:
Biblioteka Nauki
Artykuł
Tytuł:
PERCEPTION OF CHILDREN WITH CRANIOFACIAL MICROSOMIA ABNORMALITIES BY THEIR CLOSE RELATIVES
Autorzy:
Milska, Katarzyna A
Mański, Arkadiusz
Wierzba, Jolanta
Powiązania:
https://bibliotekanauki.pl/articles/2137940.pdf
Data publikacji:
2020-09-23
Wydawca:
Fundacja Edukacji Medycznej, Promocji Zdrowia, Sztuki i Kultury Ars Medica
Tematy:
neurodevelopmental disorders
craniofacial dysmorphy
overgeneralization
anomalous face overgeneralization
microgenetic theory
Opis:
When a child is born with a deformed face, his/her social environment is quickly confronted with a change which undoubtedly favours numerous over-generalizations. Children with craniofacial microsomia anomalies (CFCs) may experience less social support, more rejection and make them withdraw from their social life more frequently. The purpose of this research study is to show how children with craniofacial hypoplasia abnormalities is perceived by their close relatives. The sample of this study consisted of 26 participants (F=16; M=10). This research study was conducted using the following questionnaire methods: the Scale of Over-Generalization Effect by K. Milska and A. Mański (SOGE), modified Own Health Assessment Scale method (SOWC) and the Authors-Designed Questionnaire (ADQ) to obtain information on the issue. A child's illness always affects a variety of family life spheres. Most of the surveyed women did not experience any complication during pregnancy or childbirth. Unfortunately, after their child was diagnosed, most adults were not offered getting in contact with a psychologist / psychiatrist / psychotherapist. Some relatives - after the birth of a child with craniofacial microsomia (CFM) - reduced their working hours or gave up work completely in order to take care of the child. The most urgent needs for this child's illness reported by adults most often referred to educational and financial matters. At the time of this research study, most of the respondents (61%) - upon the birth of a child with CFM - considered it plausible to enlarge their family. As a result of the conducted research studies, new variable systems (a type and character of dysmorphia, closeness - distance) were identified, which may be a relevant element to facilitate research studies on the perception of children with body deformities by their environment. In the characteristics of a child with CFM, it was shown that his/her close relatives evaluate the child positively. Family members apply constructive strategies for coping with the child's illness, however, the research study results indicate the legitimacy of introduction of psychological and psychiatric consultations for close relatives to the standards of CFM child treatment.
Źródło:
Acta Neuropsychologica; 2020, 18(3); 367-381
1730-7503
2084-4298
Pojawia się w:
Acta Neuropsychologica
Dostawca treści:
Biblioteka Nauki
Artykuł
Tytuł:
MEDICAL STUDENTS’ KNOWLEDGE AND SENSITIVITY TO DYSMORPHIC FEATURES OF A CHILD WITH CRANIOFACIAL MICROSOMIA (CFM)
Autorzy:
Milska, Katarzyna A
Rudnik, Agata
Mański, Arkadiusz
Wierzba, Jolanta
Powiązania:
https://bibliotekanauki.pl/articles/2137952.pdf
Data publikacji:
2020-11-09
Wydawca:
Fundacja Edukacji Medycznej, Promocji Zdrowia, Sztuki i Kultury Ars Medica
Tematy:
medical students
education
learning
overgeneralization effect
empathy
Opis:
The aim of the study was to examine the level of knowledge and sensitivity to dysmorphic features in a child with facial and body dysmorphia on the part of students of medicine and dentistry. We tested 70 students of medicine and 70 students of dentistry. A photograph of a child with craniofacial microsomia (CFM)was shown to all the tested students. Their task was to detect and name those facial deformities and describe the child in terms of selected features not related to the child’s health condition. As a tool was used the Overgeneralization Effect Scale and a questionnaire designed by the author relating to facial deformities. Significant differences were observed in the level of knowledge and sensitivity to dysmorphic features between students of medicine and dentistry. Future dentists detected more dysmorphic features in the face of the photographed child when compared to students of medicine. Interestingly, this sensitivity to abnormalities was found to noticeably increase with each subsequent year of study for dentistry students, while the opposite was observed for the stu dents of medicine. Importantly, a relationship was observed be tween the sensitivity to dysmorphic features and the general evaluation of the child in terms of non-medical aspects by the group of dentistry students. With the increase in the students’ skills to recognize dysmorphic features, the overall evaluation of the child tended to decrease. The results obtained indicate that the skills related to recognizing dysmorphic features are better in students of dentistry than in students of medicine. The sensitivity to abnormalities evidently increase with each subsequent year of study for dentistry students, while the opposite was observed for medical students.
Źródło:
Acta Neuropsychologica; 2020, 18(4); 425-436
1730-7503
2084-4298
Pojawia się w:
Acta Neuropsychologica
Dostawca treści:
Biblioteka Nauki
Artykuł
Tytuł:
DIAGNOSIS OF CHILDREN WITH SANFILIPPO DISEASE – PSYCHOLOGICAL, SOCIAL AND MOTOR ASSESSMENT
Autorzy:
Anikiej-Wiczenbach, Paulina
Rudnik, Agata
Limanówka, Monika
Wierzba, Jolanta
Mański, Arkadiusz
Powiązania:
https://bibliotekanauki.pl/articles/2137954.pdf
Data publikacji:
2020-11-20
Wydawca:
Fundacja Edukacji Medycznej, Promocji Zdrowia, Sztuki i Kultury Ars Medica
Tematy:
Bayley’s Scale III
cognitive functioning
rare disease
qualitative research
Opis:
Sanfilippo disease (mucopolysaccharidosis, MPS IIIA) is one of the types of mucopolysaccharidosis associated with extensive neurological effects and somatic symptoms. The consequences of neurodegeneration and cognitive impairment are manifested in challenges with the daily functioning of patients who experience problems with communication and following instructions. The aim of this study was to assess the cognitive functioning of three patients with MPS IIIA and to find patterns of neurodegeneration and to make their environment more friendly. Three boys (from 5.5 to 7 years) with MPS IIIA participated in the study. Each participant attended two meetings, and his functioning was assessed by three independent person (using two-way mirror). We used Bayley’s Scale III with some modifications. Interviews with parents were also included. The communication of patients was limited to some vocalizations. Patients presented instrumental use of items, but not all of them were able to repeat actions after diagnostician or presented object permanence. The results showed that the cognitive functioning of participants was significantly hindered by problems related to motor dysfunction, hyperactivity, and ataxia. The psychological data was collated with medical results. This study allows indicating new sources giving the possibility of child phenotype variability and to create specific interventions in the field of psychological therapy for patients with MPS IIIA and their families.
Źródło:
Acta Neuropsychologica; 2020, 18(4); 525-535
1730-7503
2084-4298
Pojawia się w:
Acta Neuropsychologica
Dostawca treści:
Biblioteka Nauki
Artykuł
    Wyświetlanie 1-4 z 4

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