ABSTRACT
This qualitative study describes how the restrictions imposed by the COVID-19 pandemic impacted on Machado-Joseph disease (MJD) patients and their care, in the island of São Miguel (the Azores, Portugal). In-person semi-structured interviews were conducted with 11 participants, including patients, family members, healthcare professionals, and care providers. Main findings highlighted the key role played by the local association in psychosocial and healthcare for MJD patients and families, and the adverse effects on their care following the onset of the COVID-19 pandemic. In particular, hindered access to the day-care centre increased isolation and had a negative impact on mental health and disease progression. For persons with a progressive and severe neurological disease, there is no "back to normal." Future restrictive measures ensuing need to be accompanied by a careful definition of daily care routines for patients.
ABSTRACT
The COVID-19 pandemic has placed care facilities for older adults under high pressure. This study aimed to identify the perception of staff in Portuguese Residential Care Facilities for Older Adults about their experience during and right after the first lockdown (March/April 2020) due to the COVID-19 pandemic. It comprises 198 respondents who answered an open question about their experiences during the pandemic on an online questionnaire. The main findings suggested three themes: 1) a cascade of new needs on top of old problems; 2) working on the razor's edge: a difficult balance between protecting against the virus and maintaining one's well-being; and 3) a need for support and appreciation. The pandemic has exposed and accentuated the fragilities of Residential Care Facilities in Portugal, which operate with low budgets, and minimum staff. The measures to protect against infection have to be balanced by actions to maintain psychosocial and rehabilitation activities with the residents, to promote their well-being and functional capacity.