Living with a genetic, undiagnosed or rare disease

A longitudinal journalling study through the Covid‐19 pandemic

Datos Bibliográficos

ID19508448
AutoresMalia Byun (California Lutheran University California USA), Hollie Feller (Genetic Support Network Victoria Melbourne Victoria Australia), Monica Ferrie (Genetic Support Network Victoria Melbourne Victoria Australia), Stephanie Best (0000-0002-1107-8976, Australian Genomics Health Alliance Murdoch Childrens Research Institute Melbourne Australia, autor de correspondencia)
Año2022
Volumen25
Número5
Páginas2223-2234
Fecha de publicación2022-10-01
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaHealth Expectations (JOURNAL)
Identificadores de la revistaISSN: 1369-6513 • E-ISSN: 1369-7625
EditorialWiley (PUBLISHER • GB)
DOI10.1111/hex.13405
PMID35122367
OpenAlexW4210802660
IdiomaEN
Citas recibidas3
Referencias citadas30

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 (average of n = 9.7 submissions each month). Responses changed over the year, with initial journals focusing on the importance of developing new structures for day-to-day lives, while later journals started to focus on mental well-being. Throughout the project, participants reported challenges in accessing health and social care that was compounded by fear and concern over being exposed to the virus. Later journals highlight inconsistent messaging for vaccinations for this vulnerable community. DISCUSSION/CONCLUSION: In parallel with the waves of the COVID-19 pandemic, there need to be waves of targeted support for vulnerable communities. The first support wave needs to focus on facilitating the identification of new frameworks to structure day-to-day lives. A later second wave needs to focus on mental well-being and coping with isolation, while consistent communication relating to health and social care throughout was essential. PATIENT/PUBLIC CONTRIBUTION: This study was co-designed, co-led and analysed with a patient support network

Disease · Focus group · Health care · Mental health · Pandemic · Political science · Psychiatry · Psychological resilience · Qualitative research · Social distance · Social isolation · Social support · Sociology · Thematic analysis · Childhood Cancer Survivors' Quality of Life · Genomics and Rare Diseases · Medicine · Psychology · Resilience and Mental Health · Social Psychology