Qualitative research about the impact of strict enclosure in entities of the Spanish third sector related to rare diseases

Authors

DOI:

https://doi.org/10.1590/S0104-12902022210378es

Keywords:

Third sector, Strict confinement, Associationism, Rare diseases, Social impact

Abstract

As a result of the pandemic caused by the impact of the SAR-Cov-2 orthocoranavirus, strict containment measures were adopted in Spain from March 15, 2020. These measures affected, among other systems, the activity and management of third sector entities dedicated to the care of people with rare diseases. In this study we tried to know this impact, using qualitative methodology and MAXQDA software from a sample of 81 entities participating in the study. From the analysis of the information obtained, it was possible to draw the conclusion that confinement has not had a homogeneous impact on the management of the organizations. The reduction of their visibility activities stands out, with the consequent social and psycho-affective impact. This highlights a previous structural weakness that has been aggravated by this situation. The study also delves into the adjustments that these entities have made in order to be able to continue providing their support services, as well as the impact this has had on their scarce staff and management teams.

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Author Biographies

  • Juan R. Coca, Universidad de Valladolid

    Universidad de Valladolid. Departamento de Sociología y Trabajo Social. Unidad de Investigación Social en Salud y Enfermedades Raras. Valladolid, España.

  • Gema Esteban-Bueno, Unidad de Gestión Clínica Almería Periferia

    Unidad de Gestión Clínica Almería Periferia. Distrito Sanitario Almería. Servicio Andaluz de Salud. Asociación Española para la Investigación y Ayuda al Síndrome de Wolfram. Almería, España.

  • José Manuel-Guerra, Universidad de Sevilla

    Universidad de Sevilla. Departamento de Psicología Social. Sevilla, España.

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Published

2022-05-12

Issue

Section

Original research articles

How to Cite

Coca, J. R., Esteban-Bueno, G., & Manuel-Guerra, J. (2022). Qualitative research about the impact of strict enclosure in entities of the Spanish third sector related to rare diseases. Saúde E Sociedade, 31(2), e210378es. https://doi.org/10.1590/S0104-12902022210378es