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Self-Care in Individuals with Rare Diseases: A Necessary Step for Health
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Fatemeh Zahra Salamat   , Fatemeh Rezaei , Arezoo Kordian , Akram Sanagoo , Leila Jouybari , Homa Vojdani |
| Islamic azad University, Babol , dr.f.rezaeii@gmail.com |
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Abstract: (962 Views) |
Introduction: Many rare diseases are genetic disorders that, even if their symptoms do not appear early on, will be present throughout an individual's life. The importance of self-care in rare diseases lies in learning to live better, maintain self-esteem, and self-acceptance, which can contribute to mental well-being. The purpose of this article is to review the significance of self-care for individuals with rare diseases.
Methods: This review study conducted searches in Persian language databases including: Scientific information database (SID), Magiran, and English language databases PubMed, and Google Scholar without time constraints. Combinations of Persian keywords for self-care, rare diseases, rare diagnosis and their English equivalents were used for searches. 43 articles were found through a database search. Based on the inclusion criteria for the study, ultimately 10 articles (7 quantitative studies, 2 qualitative studies, and 1 mixed-methods study) were selected and reviewed.
Findings: Evidence indicates that individuals with rare diseases encounter unique self-care challenges, including “limited knowledge, unpredictable symptoms, and isolation”. Despite these hurdles, self-care is crucial for those with rare diseases, resulting in "enhanced quality of life, reduced stress and anxiety, increased adaptability and resilience, and forward momentum."
Conclusion: Although medical research primarily concentrates on treating rare diseases, the significance of self-care for individuals coping with these conditions is frequently disregarded, resulting in a notable gap in their overall well-being. Given the time-consuming and challenging nature of diagnosing, treating, and recovering from many rare diseases, nurse-led self-care education can alleviate burdens for patients and their families, exerting a substantial influence on this journey. Additional research on self-care in individuals with rare diseases is imperative. |
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| Keywords: Self-care, Rare disease, Review study |
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Full-Text [PDF 380 kb]
(521 Downloads)
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Type of Study: Review |
Subject:
Special
Received: 2024/01/1 | Accepted: 2024/06/29 | Published: 2024/06/30
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