COVID-19 Health Crisis and Chronic Illness: Protocol for a Qualitative Study

• DOI: 10.2196/28728
• Publication Date: 2021-04-19T18:43:40Z
• Authors: Élise Ricadat; Aude Béliard; Marie Citrini; Yann Craus; Céline Gabarro; Marie-France Mamzer; Ana Marques; Thomas Sannié; Maria Teixeira; Marko Tocilovac; Livia Velpry; François Villa; Louise Virole; Céline Lefève
• Keywords: Pandemic

Background The acute nature of the COVID-19 pandemic has put a strain on health resources that are usually dedicated to chronic illnesses. Resulting changes in care practices and networks have had major repercussions experience people with disorders. Objective This paper presents protocol Parcours, Associations, Réseau, Chronicité, Organisation, Usagers, Retour d’expérience, Soins (PARCOURS)-COVID study. aim this study is evaluate effects reorganization system usual network patients illness, which fosters qualifies quality continuum provided. first objective document these patients’ experiences through transformations adaptations their network, both practical dimension (ie, daily life care) subjective psychosocial illness relationship system). second understand acknowledge reorganizations during lockdown postlockdown periods. third produce better adapted recommendations for value management future crisis. Methods PARCOURS-COVID qualitative participatory research involving patient organizations as partners members part team. Three group diseases been selected regarding specificities they mobilize: (1) cystic fibrosis kidney disease, (2) hemophilia, (3) mental Four consecutive phases will be conducted, including preparatory interviews medical or associative actors each pathology field; in-depth individual pathology, analyzed using method thematic analysis; results then triangulated patient’s ecosystem; finally, (4) focus groups organized discuss participants representatives disease associations; patients; medical, psychosocial, family network) research-action framework. Results undergone peer review by French National Research Agency’s scientific committee approved ethical University Paris (registration number: IRB 00012020-59, June 28, 2020). project received funding from August 2020 April 2021. Expected disseminated 2021 2022. Conclusions Our findings inform stakes current crisis and, more broadly, any population deemed at risk. They also improve democracy supporting transferability knowledge between citizen communities. International Registered Report Identifier (IRRID) DERR1-10.2196/28728