Kakovost življenja oseb s Pompejevo boleznijo: študija primera

Bine Halec; Olga Žunkovič; Gordana Horvat Pinterić; Mateja Lorber

doi:10.14528/snr.2021.55.1.3048

Avtorji

Bine Halec Univerzitetni klinični center Maribor, Ljubljanska ulica 5, 2000 Maribor, Slovenija
Olga Žunkovič Univerzitetni klinični center Maribor, Ljubljanska ulica 5, 2000 Maribor, Slovenija
Gordana Horvat Pinterić Univerzitetni klinični center Maribor, Ljubljanska ulica 5, 2000 Maribor, Slovenija
Mateja Lorber Univerza v Mariboru, Fakulteta za zdravstvene vede, Žitna ulica 15, 2000 Maribor, Slovenija https://orcid.org/0000-0001-7200-5204

DOI:

https://doi.org/10.14528/snr.2021.55.1.3048

Ključne besede:

redke bolezni, encimska nadomestna terapija, kakovost življenja

Povzetek

Uvod: Pompejeva bolezen spada med zelo redke prirojene metabolne bolezni; zanjo je značilen primanjkljaj ali odsotnost encima alfa-glukozidaza. Kopičenje glikogena v mišičnih celicah posledično privede do slabšanja mišične moči, močnih bolečin ter napredujočih težav z dihanjem. Namen raziskave je bil ugotoviti vpliv bolezni na kakovost življenja in negovalne probleme, ki se pri takšnem pacientu pojavijo.
Metode: Uporabljena je bila kvalitativna metodologija raziskovanja. Izveden je bil delno strukturiran intervju s pacientko, ki ima diagnosticirano Pompejevo bolezen. Intervju smo posneli, dobesedno zapisali in analizirali z metodo analize besedila.
Rezultati: Ugotovljeno je bilo, da je Pompejeva bolezen močno vplivala na kakovost življenja pacientke. Z metodo analize besedila je bilo identificiranih pet podkategorij: sprejetje bolezni; pomoč bližnjih; težave zaradi bolezni; izvajanje vsakodnevnih aktivnosti in zdravljenje. Podkategorije so bile nato združene v glavno
kategorijo, poimenovano »vpliv na kakovost življenja«. Prav tako je bilo izpostavljenih sedem negovalnih problemov: strah, žalost, oteženo dihanje, bolečina, obstipacija, utrujenost, nevarnost za padec.
Diskusija in zaključek: Pompejeva bolezen močno spremeni kakovost življenja pacienta, saj se slednji srečuje s številnimi težavami na različnih področjih življenja. Za zagotavljanje višje kakovosti življenja in lažje izvajanje vsakodnevnih aktivnosti je pomembno, da pacient s Pompejevo boleznijo s strani bližnjih in zdravstvenih delavcev prejme ustrezno pomoč in podporo.

Prenosi

Podatki o prenosih še niso na voljo.

Metrike

Nalaganej metrik....

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