diplomsko delo
Sara Marković (Avtor), Ljubiša Pađen (Recenzent), Marija Milavec Kapun (Mentor)

Povzetek

Uvod: Bulozna epidermoliza je poimenovanje skupine dednih bolezni, za katero sta značilna krhkost kože in sluznic ter nastajanje mehurjev po površini telesa. Samostojnost pacientov je odvisna od izraženosti simptomov, predvsem ran, bolečine in sočasnih bolezni. Vloga zdravstvenega osebja pri osebah z bulozno epidermolizo je predvsem spodbujanje samooskrbe pacientov. Namen: Namen diplomskega dela je raziskati dejavnike, ki pozitivno vplivajo na samooskrbo pacientov z bulozno epidermolizo v domačem okolju in intervencije medicinskih sester pri ljudeh z bulozno epidermolizo. Metode dela: Uporabili smo deskriptivno metodo dela. Narejen je bil pregled strokovne in znanstvene literature, ki smo jo iskali v bibliografskih bazah CINAHL, MEDLINE in iskalniku ScienceDirect. Uporabljene besede v iskalnem nizu: epidermolysis bullosa, EB, self care, self efficiency, self management, self-sufficiency, self support, home, home enviroment, nurse, nurses, nursing, wound, wounds, skin, epidermis. V pregled smo vključili članke, objavljene v angleškem jeziku v obdobju od leta 2010 do leta 2022, ki so bili dostopni v celotnem obsegu besedila za člane knjižnice Univerze v Ljubljani. V analizo smo vključili 23 člankov. Rezultati: Domače okolje za paciente predstavlja glavno strukturo stabilnosti, varnosti in zavetja. Raziskave kažejo, kako pomembni sta spodbuda in podpora medicinskih sester pacientom. Paciente motiviramo k doseganju njihovih ciljev in povečanju samostojnosti. Izobraževanja medicinskih sester so izrednega pomena saj pripomorejo k prenosu znanja o oskrbi kože in ran na paciente. Njihovo znanje o bolezni prispeva k izboljšanju zdravstvene pismenosti pacientov in učinkovito izvajanje negovalnih intervencij. Medicinske sestre s poučevanjem pacientov glede samooskrbe ustvarjajo dober odnos z njimi. Razprava in zaključek: Glede na redkost bolezni sta šibka zdravstvena pismenost in samooskrba pacientov glavna dejavnika, ki vodita do počasnejšega celjenja ran, socialne izolacije in anksioznih motenj. Pri organiziranju zdravstvene oskrbe na domu so potrebni načrt zdravstvene nege in vnaprej določene intervencije, ki se bodo izvajale v domačem okolju. Izobraževalni programi za medicinske sestre, ki dajejo natančne informacije o zdravstvenih intervencijah, ki so usmerjene v obvladovanje bolezni in povečanje samostojnosti pacientov z bulozno epidermolizo, lahko izboljšajo prognozo bolezni in kakovost življenja.

Ključne besede

diplomska dela;zdravstvena nega;bulozna epidermoliza;medicinske sestre;domače okolje;samooskrba;atipične rane;

Podatki

Jezik: Slovenski jezik
Leto izida:
Tipologija: 2.11 - Diplomsko delo
Organizacija: UL ZF - Zdravstvena fakulteta
Založnik: [S. Marković]
UDK: 616-083
COBISS: 147984643 Povezava se bo odprla v novem oknu
Št. ogledov: 24
Št. prenosov: 12
Ocena: 0 (0 glasov)
Metapodatki: JSON JSON-RDF JSON-LD TURTLE N-TRIPLES XML RDFA MICRODATA DC-XML DC-RDF RDF

Ostali podatki

Sekundarni jezik: Angleški jezik
Sekundarni naslov: Promoting the independence of patients in the care of epidermolysis skin
Sekundarni povzetek: Introduction: Epidermolysis bullosa is a group of hereditary diseases characterized by a mechanical fragility of the skin and mucous membranes and blister formation all over the body. As regards wounds, pain, and comorbidities, patients' independence depends on how they express their symptoms. Healthcare personnel have a major role in supporting self-care and independence of patients with epidermolysis bullosa. Purpose: The purpose of this study is to identify the positive factors influencing better self-care and nurse interventions for people with epidermolysis bullosa living at home. Methods: We used a descriptive work method to perform a review of and scientific literature by searching the bibliographic data bases of CINAHL, MEDLINE and ScienceDirect. The literature search was conducted by using the keywords: epidermolysis bullosa, EB, self care, self efficiency, self management, self-sufficiency,r self support, home, home enviroment, nurse, nurses, nursing, wound wounds, skin, epidermis.In the review, we included articles published in the English language, published between 2010 and 2022, as well as those available in full text for members of the library of the University of Ljubljana. We included 23 articles in the analysis. Results: The home environment represents the main structure of stability, safety and shelter for patients with epidermolysis bullosa. Research shows the importance of nurses encouraging and supporting their patients, so they can find motivation to achieve their goals and increase their independence. Nurse education programmes are important to ensure the transfer of knowledge to patients and the delivery of skin and wound care. Their knowledge of the disease contributes to improving health literacy of patients, as well as to effective delivery of nursing interventions. By teaching patients about self-care, nurses create a good relationship with them. Discussion and conclusion: Given the rarity of the disease, poor health literacy and self-care are major factors leading to slower wound healing, social isolation and anxiety disorders. When organising health care at home, a nursing care plan, and predefined interventions to be carried out in the home environment are necessary. Nurse educational programmes which provide detailed information on health interventions aimed at managing the disease and increasing the independence of patients with epidermolysis bullosa can improve disease prognosis and the quality of life.
Sekundarne ključne besede: diploma theses;nursing care;epidermolysis bullosa;nurses;home environment;self-care;atypical wounds;
Vrsta dela (COBISS): Diplomsko delo/naloga
Študijski program: 0
Komentar na gradivo: Univ. v Ljubljani, Zdravstvena fak., Oddelek za zdravstveno nego
Strani: 35 str., [8] str. pril.
ID: 18509034