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Anhörigas upplevelser av pediatrisk palliativ vård: En kvalitativ litteraturstudie
Swedish Red Cross University.
Swedish Red Cross University.
2022 (Swedish)Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
Abstract [en]

Background: Palliative care is aimed at relieving care, not curative care. Pediatric palliative carediffers from palliative care aimed at adults as the degree of maturity and insight of the child is crucial. Nurses working in pediatric palliative care find it emotionally difficult to support relatives.

Aim: The aim was to investigate relatives' experiences of pediatric palliative care.

Method: Literature study with a qualitative approach where data has been analyzed through Braun and Clarke's thematic analysis. The result is based on twelve articles.

Results: Three themes were identified: need for support from the care team, to be the child's lawyer and a changed life situation. Relatives feel the need for supportive care with experienced healthcare professionals. During the pediatric palliative care, relatives feel the need to be the child's lawyer andclaim to know the child best. Relatives experience challenging emotions during the care period, which makes the situation more difficult.

Summary: Lack of knowledge of caregivers affects the performance of an adapted care. This affects relatives' trust in the caregivers, which creates frustration among both relatives and caregivers. The frustration needs to be met with an understanding of the family's needs to adapt the care, which reduces relatives' feelings of being overlooked. The nurse is responsible for showing consideration forrelatives and therefore needs care in accordance with family-focused care.

Abstract [sv]

Bakgrund: Palliativ vård syftar till lindrande vård, inte kurativ. Den pediatriska palliativa vården skiljer sig från den palliativa vården riktad till vuxna då mognadsgrad och insikt hos barnet är avgörande. Sjuksköterskor som arbetar med pediatrisk palliativ vård upplever det emotionellt svårt att stödja anhöriga.

Syfte: Syftet var att undersöka anhörigas upplevelser av pediatrisk palliativ vård.

Metod: Litteraturstudie med kvalitativ ansats där data har analyserats genom Braun och Clarkes tematiska analys. Resultatet är baserat på tolv artiklar.

Resultat: Tre teman identifierades: Behov av stöd från vårdteamet, att vara barnets advokat och en förändrad livssituation. Anhöriga upplever behov av en stöttande vård med erfaren vårdpersonal. Under den pediatriska palliativa vården känner anhöriga behovet att vara barnets advokat samt påstår att dem känner barnet bäst. Anhöriga upplever utmanande känslor under vården vilket görsituationen svårare.

Slutsats: Brist på kunskap hos vårdgivare påverkar utförandet av en anpassad vård. Detta påverkaranhörigas tillit till vårdgivarna vilket skapar en frustration hos både anhöriga och vårdgivare. Frustrationen behöver bemötas med förståelse för familjens behov för att anpassa omvårdnaden, vilket minskar anhörigas känslor av att bli förbisedda. Sjuksköterskan ansvarar för att visa hänsyn tillanhöriga och behöver därför vårda i enlighet med familjefokuserad omvårdnad.

Place, publisher, year, edition, pages
2022. , p. 24
Keywords [en]
Child, Family Members, Palliative care, Perceptions
Keywords [sv]
Anhöriga, Barn, Palliativ vård, Upplevelser
National Category
Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-4267OAI: oai:DiVA.org:rkh-4267DiVA, id: diva2:1661580
Educational program
Undergraduate Nursing Program
Supervisors
Examiners
Available from: 2022-05-30 Created: 2022-05-28 Last updated: 2022-06-08Bibliographically approved

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