The COVID-19 pandemic resulted in a major population wide disruption of the structure of everyday life. Its accompanying social distancing protocols including lockdowns and public health restrictions led to a wide range of challenges. For people living with chronic illnesses, rare disorders, and their families, the COVID-19 pandemic represented additonal challenges. Uncertainty regarding the risk of an being infected while having to navigate the same uncertainty and isolation as the general population, all while managing ongoing health needs that often depend on fragile healthcare systems.
This thesis explores the mental health consequences of the pandemic for these vulnerable groups through three studies. First, a 13-month follow-up of adults with rare disorders revealed persistently high levels of anxiety and depression, with little sign of improvement over time. Second, a longitudinal analysis comparing people with chronic conditions to those without found that, while symptoms decreased in healthy controls from the onset to the end of the COVID-19 pandemic, they worsened in those with chronic conditions. Finally, interviews with parents of children with Prader-Willis syndrome revealed a disruption to the structure of everyday life, and a pulverisation of responsibility with an increased care burden on parents. They also revealed a long standing burden pre-existing of the COVID-19 pandemic were also highlighted by the parents.
The three studies in the thesis indicate that in contrast to the general population, individuals with chronic conditions and rare disorders experienced sustained and elevated psychological distress throughout the pandemic. One interpretation lies in the pandemics disruption of the social determinants of health, potentially widening pre-existing inequalities. In the qualitative interviews parents highlighted how the COVID-19 pandemic was a stressfull period for their family but also more of the same. Even before the COVID-19 pandemic emerged as a major disruption in daily life, their day to day activities were already relying on a great deal of self sacrifice, inadequate information, difficulties accessing treatments and a high care burden for the parents, indicating pre-existing vulnerabilities. Following the end of the COVID-19 pandemic, parents reported that several services, such as vocational activities and health related programs were not reinstated, suggesting that the pandemic may have contributed to a permanent loss or reduction of certain care offerings. The discontinuation of such services is likely to exacerbate inequalities in the future as these families are reliant on these support structures.