JMIR Publications

ABSTRACT

Background:

The acute nature of COVID-19 epidemic puts a strain on the health resources usually dedicated to chronic illness. Induced changes of care practices and networks had major repercussions on the experience of chronically ill people. This paper presents the research protocol PARCOURS-COVID, and aims to study the effects of such a reorganization on their usual care network which fosters and qualify its quality and continuum.

Objective:

Our first objective is to document chronically ill people experience through its transformations and adaptations, both in its practical dimension – daily life and care – and subjective dimension (psychosocial experience of illness and relationship to the health system). The second objective of the study is to identify and reconstruct these reorganizations during the lockdown and the post-lockdown period, in order to grasp their repercussions chronologically and structurally. The last objective is to produce recommendations for adapting the healthcare system to future crises by better acknowledging the experience of chronic patients, their involvement and consultation in the preparation and management of a health crisis.

Methods:

The PARCOURS-COVID study is a qualitative and participatory research involving patient organizations as research partners and members of patient organizations as part of the research team. Three group of chronic diseases have been selected regarding the specificities of the care network they mobilise: cystic fibrosis and kidney disease, haemophilia and mental disorders. Four consecutive phases will be conducted: i) preparatory interviews; ii) in-depth individual interviews with patients of each pathology will be analysed using a qualitative method of thematic analysis; iii) results of these both latter will be triangulated through interviews with members of each patient’s care ecosystem; iv) focus-groups will be organized to discuss the results with research participants ie. representatives of chronic disease associations, patients, actors of the medical, psycho-social and family care network in a research-action frame.

Results:

The protocol study has undergone a peer-review by the French National Research Agency's scientific committee and has been approved by the Research Ethical Committee of the Université de Paris (registration number: IRB 00012020-59 June 28th, 2020). The project was funded from July 2020 through March 2021. Expected results will be disseminated in 2021 and 2022.

Conclusions:

Our findings will better inform the stakes of the current health crisis on the management of the chronically ill and, more broadly, any future crisis for a population deemed to be at risk. They will improve health democracy by supporting a better transferability of knowledge between the scientific and citizen communities.