The Impact of Self-Care Programs on People with Rare Diseases: A Review Study

Objective: The aim of this study was to review the studies that have investigated the impact of self-care programs on people with rare diseases.Background: Rare disease refers to any disease that affects a small percentage of the population. In rare diseases, self-care is an essential and inseparable part of treatment, and patients who are involved in self-care have significantly improved clinical outcomes with better quality of life,less hospitalization,and longer survival.Methods: To find relevant studies, a search was conducted in the following databases: SID , Magiran,and English-language databases of PubMed, Scopus, ProQuest, ScienceDirect, and Google Scholar. ۸۲ articles were found through the search in the databases and the list of articles. Based on the study inclusion criteria, ۱۲ articles were finally selected and reviewed.Findings: Supporting self-care in these people is an intrinsic process to reach an agreement with them based on their perspectives to sensitize them to create responsibility and motivation in making this change.Conclusion :Since the diagnostic and treatment for many of these rare diseases can be time-consuming and fraught with numerous challenges, self-care education through nursing profession can significantly impact both the patient and their family in reducing the burden associated with the disease.