Investigación cualitativa sobre el impacto del confinamiento estricto en las entidades del tercer sector españolas relacionadas con las enfermedades raras

Coca, Juan Romay; Esteban-Bueno, Gema; Santos, José Manuel Guerra de los

doi:10.1590/s0104-12902022210378es

Cited by 1 publication

(1 citation statement)

References 12 publications

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“…Organisations concerned with RDs displayed similar resilience to RD patients both in the reviewed article and in another study conducted in Spain [47], which revealed their dynamism and proactivity in coping with decreased personnel and new challenges during the pandemic.…”

Section: Discussionmentioning

confidence: 58%

Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

Faccio,

Bottecchia,

Rocelli

2023

IJERPH

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The COVID-19 pandemic took a toll on everyone’s lives, and patients with rare diseases (RDs) had to pay an even higher price. In this systematic review, we explored the impact of the COVID-19 pandemic on individuals with RDs from a psychological perspective. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we retrieved articles from the Google Scholar, Scopus, and PubMed databases focusing on ‘COVID-19,’ ‘psychology,’ and ‘rare diseases.’ Seventeen primary articles were identified (mainly from continental Europe). The results revealed the psychological effects of the pandemic on rare disease patients, including increased anxiety, stress, and depressive moods. This review also highlighted the increased vulnerability and reduced quality of life of rare disease patients during the pandemic, as well as the importance of telecare and psychological support as critical interventions for improving their well-being. There is an urgent need for multidisciplinary research and stronger healthcare systems to meet the unique challenges of rare disease patients, who represent 3.5–5.9% of the global population.

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Section: Discussionmentioning

confidence: 58%