Exploring informal caregivers' well-being during COVID-19 through online discussion forums.

Abstract

Background: COVID-19 has increased pressures on caregivers, disruptions to health services and increased health concerns during COVID-19. Reports have been made on informal carers' increased workload and limited support services during the pandemic.

Aims: This study aimed to explore how informal caregivers experienced their well-being during COVID-19 through online discussion forums.

Materials and methods: A reflexive thematic analysis characterised by theoretical flexibility, organic inductive coding processes and theme development was conducted on online discussion forums. The method highlighted theme reviewing which was done twice to encourage data reflection. The project was conducted on a novel topic which was a new area of research interest. Semantic coding where participants' words were used directly in the interpretation and construction of themes was used.

Results: In the theme 'Locked in or locked away' caregivers worried about continuing care at home, due to limited freedom and worries of hiring help during a pandemic. Some expressed worries about visitation rights and grief of not being present with a loved one if they would reside in a care home. The theme 'Nothing left to give' suggested that COVID-19 exasperated caregivers' loneliness, social isolation and increased responsibilities and challenges with other roles. Bitterness, resentment and anger were felt towards lack of social support and workload. Theme 'Celebrating a virtual way of life' described how caregivers used online forums when other support services were disrupted.

Discussion: We discuss the role of informal caregiver that was described as all-encompassing during COVID-19. We highlight the importance of advanced planning for care home transitions and the use of online forums as a form of support. We suggest further exploration into informal caregivers' role balancing.

Conclusion: COVID-19 seemed to affect informal caregivers negatively, but they reframed their situations and sought online support. With COVID-19-related restrictions and increased workload, COVID-19 added an all-or-nothing aspect to care home transition decisions.