Wybrane biopsychospołeczne aspekty funkcjonowania pacjentów z dystrofią mięśniową Duchenne’a i ich rodzin

Author:

Anikiej-Wiczenbach Paulina1ORCID,Mański Arkadiusz1ORCID

Affiliation:

1. Psychological Counselling Centre for Genetic Rare Diseases; University of Gdańsk

Abstract

Selected Biophyschosocial Aspects of Functioning of Patients with Duchenne Muscular Dystrophy and Their Families Duchenne Muscular Dystrophy is a disease that shows extremely complex connections between the genetic-molecular sphere and the characteristics of psychological functioning. The text presented below introduces the importance of biological sources in explaining many aspects of the psychological functioning of DMD patients. In the field of research and rehabilitation practice related to DMD, interdisciplinarity becomes a necessity that can improve the quality of life of patients with DMD and their families to a greater extent than before. On the one hand, the article is a concise account of the views that have been dominating both in the past and today about this disease, as well as a proposal outlining the directions of future research related to describing and explaining the processes that form the psychological image of people with DMD. The complexity of this image can be made more accessible and understandable if, both in research and in everyday life, it becomes possible to refer to the genetic-molecular sources, psychological resources and characteristics of the environment in which a person with DMD grows up in the process of describing and explaining DMD.

Publisher

Uniwersytet Jagiellonski - Wydawnictwo Uniwersytetu Jagiellonskiego

Subject

Materials Science (miscellaneous)

Reference40 articles.

1. 1. Anikiej P., Mański A., Bidzan M. (2028), Cognitive functioning and autonomy of patients with duchenne muscular dystrophy. Acta Neuropsychol., 16(2), 157-166, doi:10.5604/01.3001.0011.8321.

2. 2. Anikiej P., Mański A., Bidzan M. (2018), Aktualizacja-siebie rodziców dzieci z dystrofią mięśniową Duchenne'a. Niepełnosprawność - Zagadnienia, Problemy, Rozwiązania, 2(27), 37-53.

3. 3. Bateson G. (1996), Umysł i przyroda. Warszawa: Państwowy Instytut Wydawniczy.

4. 4. Baumbusch J., Mayer S., Sloan-Yip I. (2018), Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System. Journal of Genetic Counseling, 28(2), https://www.doi.org/10.1007/s10897-018-0294-9.

5. 5. Brown S.C., Lucy J.A. (1997), Dystrophin: Gene, Protein and Cell Biology. Cambridge: Cambridge University Press.

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3