Zagotavljanje pravnega varstva kronično bolnim otrokom na kompletni parenteralni prehrani

Pance, Slobodanka

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Title:	Zagotavljanje pravnega varstva kronično bolnim otrokom na kompletni parenteralni prehrani
Authors:	ID Pance, Slobodanka (Author) ID Kraljić, Suzana (Mentor) More about this mentor...
Files:	MAG_Pance_Slobodanka_2018.pdf (1,40 MB) MD5: 14AFE38BC2DD4F9662AC22CE2A484759 PID: 20.500.12556/dkum/bab58531-9c62-42e8-bb06-f4e0f5ae681c
Language:	Slovenian
Work type:	Master's thesis/paper
Organization:	FOV - Faculty of Organizational Sciences in Kranj
Abstract:	Sindrom kratkega črevesa je kronična bolezen, ki prizadene delovanje prebavil. Za normalno rast in razvoj otrok s sindromom kratkega črevesa je potrebna kompletna parenteralna prehrana. Otroci s to boleznijo imajo vstavljen broviac kateter, po katerem vsakodnevno dobivajo parenteralno prehrano. Pomembno je, da so starši seznanjeni z zakonodajo in pravicami staršev in otrok, ki potrebujejo posebno nego in varstvo. S pomočjo primerne edukacije staršev s strani zdravstvenega osebja in urejenega zdravstvenega varstva kronično bolnih otrok na kompletni parenteralni prehrani s strani države je zagotovljena varna, kakovostna in kontinuirana domača oskrba. Namen magistrskega dela je bil raziskati in ugotoviti, kako se izvaja zagotavljanje pravnega varstva kronično bolnim otrokom na kompletni parenteralni prehrani. V prvem poglavju smo opredelili problem raziskave in nato predstavili kronično bolnega otroka na kompletni parenteralni prehrani s sindromom kratkega črevesa. V nadaljevanju drugega poglavja smo opisali sodelovanje zdravstvenih delavcev s starši kronično bolnih otrok na kompletni parenteralni prehrani, v tretjem podpoglavju pa pravne okvire pravnega varstva in pravice kronično bolnih otrok na kompletni parenteralni prehrani. V nadaljevanju smo najprej predstavili cilje in metodologijo izvedene kvalitativne raziskave in nato v četrtem poglavju rezultate raziskave. Predstavili smo stališča staršev glede zagotavljanja pravnega varstva kronično bolnih otrok na kompletni parenteralni prehrani. Primarne podatke, ki smo jih predstavili v empiričnem delu magistrskega dela, smo zbrali s pomočjo šestih delno strukturiranih intervjujev z izbranimi starši otrok, ki so uporabniki pravnega varstva kronično bolnih otrok na kompletni parenteralni prehrani v Sloveniji. Na osnovi rezultatov raziskave v magistrskem delu smo ugotovili, da so potrebne določene spremembe in izboljšave na področju pravnega varstva kronično bolnih otrok na kompletni parenteralni prehrani v Sloveniji. V rezultatih smo predstavili stališča in predloge staršev za uvajanje izboljšav z vidika pravnega in socialnega varstva otrok s kronično boleznijo na kompletni parenteralni prehrani. Predstavili smo tudi »poskusno utemeljeno teorijo« in jo dopolnili s shemo, v kateri je prikazan poskusni model dopolnjenega zagotavljanja pravnega varstva kronično bolnim otrokom na kompletni parenteralni prehrani. V zaključku smo odgovorili na raziskovalna vprašanja in predlagali izboljšave ter spremembe na področju zagotavljanja pravnega varstva kronično bolnih otrok na kompletni parenteralni prehrani, kar bi pripomoglo k njihovemu lažjemu in kakovostnejšemu življenju.
Keywords:	• pravno varstvo, • kronično bolan otrok, • kompletna parenteralna prehrana.
Place of publishing:	Maribor
Year of publishing:	2018
PID:	20.500.12556/DKUM-72711
COBISS.SI-ID:	8071443
NUK URN:	URN:SI:UM:DK:05KXPS9C
Publication date in DKUM:	27.11.2018
Views:	1590
Downloads:	248
Metadata:
Categories:	FOV
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Licences

License:	CC BY-NC-ND 4.0, Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International

Link:	http://creativecommons.org/licenses/by-nc-nd/4.0/
Description:	The most restrictive Creative Commons license. This only allows people to download and share the work for no commercial gain and for no other purposes.
Licensing start date:	22.10.2018

Secondary language

Language:	English
Title:	Providing of legal protection for chronically ill children on complete parenteral nutrition
Abstract:	Short bowel syndrome is a chronic illness, affecting the digestive system. For normal growth and development of children with the short bowel syndrome, complete parenteral nutrition is needed. Children with this illness have an inserted Broviac catheter, thru which they receive they daily nutrition. It is important that parents are familiar with the legislation and rights of parents and children, who need special care and protection. With the help of proper educating of parents by the the nursing staff and regulated health care for chronically ill children with complete parenteral nutrition, the State provides a safe and continuous home care, full of quality. The purpose of the master’s thesis was to research and determine the enforcement of legal protection for chronically ill children with complete parenteral nutrition. In the first chapter, we defines the subject of the research and then presented the chronically ill child with complete parenteral nutrition with short bowel syndrome. Following in the second chapter, we described the cooperation of health care practitioners with parents of chronically ill children on complete parenteral nutrition and in the third subchapter the legal framework of legal protection and rights of chronically ill children with complete parenteral nutrition. We then first presented the goals and methodology of the performed qualitative research and in the fourth chapter the results of the research. We presented the position of parents regarding the provision of legal protection of chronically ill children on complete parenteral nutrition. The primary data we have presented in the empirical part of the master’s thesis, were obtained with the help of six semi-structured interviews with selected parents of children, subjected to the legal protection of chronically ill children with complete parenteral nutrition in Slovenia. Based on the results of the research in the master’s thesis, we found, that certain changes and improvements are needed in the field of legal protection of chronically ill children with complete parenteral nutrition in Slovenia. In the results, we presented the position and suggestions of parents regarding the introduction of improvements in the field of legal and social protection of children with a chronic illness with complete parenteral nutrition. We also presented the “experimentally based theory” and completed it with a scheme, which presents an experimental model of completed provision of legal security to chronically ill children with complete parenteral nutrition. In the conclusion, we answered the research questions and suggested improvements and changes in the field of ensuring legal protection to chronically ill children with complete parenteral nutrition, which would contribute to the quality of their life and simplify it.
Keywords:	• legal protection, • chronically ill child, • complete parenteral nutrition.

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