Living with a genetic, undiagnosed or rare disease: A longitudinal journalling study through the COVID-19 pandemic.

ABSTRACT:

Introduction

COVID-19 changed the way we lived with uncertainty from the outset as the pandemic impacted every aspect of our lives from well-being, socializing to accessing healthcare. For people in vulnerable populations, such as those with genetic, undiagnosed and rare disorders, the experience was heightened.

Aim

The aim of this study was to identify how the rapidly changing COVID-19 environment impacted the lives of the Genetic, Undiagnosed and Rare Disease community.

Methods

From June 2020 to May 2021, we collected monthly open-ended journals from people living in Australia with genetic, undiagnosed and rare disorders. Data analysis was deductive, using the Resilience Scale for Adults, and inductive using thematic analysis.

Results

We recruited 29 people (

SUBMITTER: Byun M 

PROVIDER: S-EPMC9111564 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature