Title Posebnosti skrbi kod djece oboljele od spinalne mišićne atrofije Title (english) Particularities care in children with spinal muscular atrophy Author Ana-Marija Pijanec Mentor Jurica Veronek (mentor)Committee member Melita Sajko (predsjednik povjerenstva)Committee member Jurica Veronek (član povjerenstva)Committee member Hrvoje Hećimović (član povjerenstva)Granter University North Defense date and country 2019-04-16, Croatia Scientific / art field, BIOMEDICINE AND HEALTHCARE Abstract Spinalna mišićna atrofija je genetski nasljedna bolest koja obuhvaća nekoliko tipova bolesti, a očituje se propadanjem živčanih stanica kralježnične moždine i moždanog debla i uzrokuje atrofiju mišića.
S obzirom da je spinalna mišićna atrofija jedna od rijetkih bolesti kod djece u Hrvatskoj i inozemstvu, potrebna je bolja zdravstvena skrb i veća dostupnost informacija o samoj bolesti i liječenju. Također se povećava interes u istraživanju liječenja i mjerenju kvalitete života oboljele djece. Kako bi dobili uvid u kvalitetu života, dostupnost informacija o bolesti i najčešćim problemima u liječenju oboljele djece, tijekom izrade rada provedeno je istraživanje.
Cilj istraživanja je bio ispitati kvalitetu zdravstvene skrbi djece oboljele od spinalne mišićne atrofije. Ispitivanje je provedeno na uzorku od ukupno 68 ispitanika roditelja / skrbnika iz Hrvatske i inozemstva, od kojih je 38 ispitanika s područja Hrvatske, Bosne i Hercegovine, Srbije i Slovenije, dok je njih 30 iz inozemstva. U upitniku je sudjelovalo 56 roditelja / skrbnika ženskog spola i 12 muškog spola. Dob roditelja / skrbnika je u rasponu od 18 pa više od 40 godina. Kod ovog upitnika analizirala se procjena informiranosti o bolesti od koje njihova djeca boluju, zadovoljstvo zdravstvenom skrbi, dodatna pomoć u kući za oboljelo dijete, te liječenje i ublažavanje simptoma koji su potrebni za njihovo oboljelo dijete. Roditelji / skrbnici, sudionici ovog ispitivanja su ocijenili informiranost prilično dobro od strane liječnika i ostalih roditelja / skrbnika čija djeca boluju od iste bolesti. Najlošije je ocjenjena dodatna pomoć u kući za oboljelo dijete, te primanje terapije Nusinersen.
Zdravstveni djelatnici, uključujući i medicinske sestre mogu na različite načine utjecati na poboljšanje kvalitete života djece oboljele od spinalne mišićne atrofije. Zdravstvena njega u kući, patronažna služba te fizioterapeuti mogu mnogo učiniti za oboljelu djecu ako ih redovito prate, upućuju, kontroliraju i pomažu u rješavanju njihovih problema i problema roditelja / skrbnika.
Abstract (english) Spinal muscular atrophy is a genetic hereditary disease that includes several types of illness, and is manifested by the decay of nerve cells of the spinal cord and brainstem and causes muscle atrophy.
Given that spinal muscular atrophy is one of the rare diseases in children in Croatia and abroad, better health care and greater availability of information on the illness itself and treatment is needed. There is also an increasing interest in the research of the treatment and measurement of the quality of life of the infant. In order to gain insight into the quality of life, the availability of information about the disease and the most common problems in the treatment of the underrated children, research was carried out during the work.
The aim of the research was to examine the quality of health care of children suffering from spinal muscular atrophy. The survey was conducted on a sample of 68 parents / carers from Croatia and abroad, 38 of them from Croatia, Bosnia and Herzegovina, Serbia and Slovenia, while 30 from abroad. The questionnaire was attended by 56 female parents and 12 male spouses. The age of parents / carers ranges from 18 to over 40. In this questionnaire, an assessment was made of information on the illnesses from which their children are suffering, health care satisfaction, additional home help for the ill child, and treatment and mitigation of the symptoms that are needed for their diseased child. Parents / carers, participants in this study assessed the information quite well by doctors and other parents / caregivers whose children are suffering from the same illness. The worst was the estimated additional help in the home for the ill child, and receiving Nusinersen therapy.
Health care workers, including nurses, can in different ways affect the quality of life of children with spinal muscular atrophy. Home care, patronage and physiotherapists can do a lot for illness children if they are regularly monitored, directed, controlled, and assisted in solving their problems and problems of parents / carers.
Keywords
spinalna mišićna atrofija
nasljedna bolest
Nusinersen
zadovoljstvo informiranosti
kvaliteta zdravstvene skrbi
medicinska sestra
Keywords (english)
spinal muscular atrophy
hereditary illness
nusinersen
satisfaction of information
quality of health care
nurse
Language croatian URN:NBN urn:nbn:hr:122:744864 Study programme Title: Nursing Type of resource Text File origin Born digital Access conditions Open access Terms of use Created on 2019-05-08 10:31:02
