Life after Covid-19: Putting patient experience at the centre of future service responses

Dr Danielle Hitch1, Assoc. Prof. Kimberley Haines1,2, Assoc. Prof. Cathy Said1,2, Ms.  Kathryn  Barker1, Ms.  Sarah  Booth1, Ms.  Vanessa Carter1, Ms. Courtney Hiley1, Dr.  Sara  Holton3, Dr.  Melanie  Lloyd1, Ms.  Helen Nelson1, Mr.  Matthew  Thorpe1, Assoc. Prof.  Genevieve  Pepin3, Assoc. Prof.  Harin Karunajeewa1,2

1Western Health, Sunshine, Australia, 2University of Melbourne, Parkville, Australia, 3Deakin University, Geelong, Australia

The rapid escalation of the Covid-19 pandemic presented incredible challenges to healthcare services, in the context of limited available evidence and overwhelming acuity. This study aimed to understand the patient experience of Covid-19, to ensure people receive optimal support and management throughout their recovery. Participants include both inpatient and community-managed people with Covid-19 (excluding those who required intensive care or lived in aged care). Participants described their experience of Covid-19 via narrative interviews, to explore how they have made sense of this life event. To date, 44 interviews are complete and data collection remains ongoing. The experience of Covid-19 recovery includes both time-dependent and sustained elements. Time-dependent elements are mostly confined to the acute phase, with many participants describing no or few ‘classic’ fever or respiratory symptoms. However, gastrointestinal and neurological symptoms were common, and symptoms were often misattributed (e.g., hangover) leading to delayed testing.

Illness trajectories vary between individuals and may feature deterioration after diagnosis, gradual recovery and/or alternating relapses and remissions. The most common sustained elements of experience were persistent fatigue, dyspnoea, chest pain and cognitive impairment (‘brain fog’). Broader negative psychosocial impacts from grief for those lost to the virus, government-mandated restrictions, return to work barriers, poor or no follow up care and marked stigma or discrimination are also described by Covid-19 survivors. The participants full, rich descriptions of their lived experience of Covid-19 infection are essential to ensuring new assessments, treatments and initiatives are relevant and translatable to the post-Covid world.


Dr. Danielle Hitch is the Allied Health Research and Translation Lead at Western Health and Senior Lecturer in Occupational Therapy at Deakin University. Her areas of expertise and interest include implementation science, mental health and social justice.

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