Abstract
BackgroundMany relatives of people with psychotic and bipolar disorders experience a high caregiver burden normally. During the first COVID-19 lockdown, mental health services partly shut down in many countries. The impact on relatives is unknown.AimsExplore how relatives of people with psychotic and bipolar disorders experienced changes in treatment and service availability for their family member during the first COVID-19 pandemic lockdown in the spring of 2020, and to what extent they perceived information and support to be satisfactory. To help guide future contingency plans, we were also interested in what relatives would prioritize in the event of a future crisis.Study settingWe distributed an anonymous Norwegian online survey inviting relatives of individuals with psychotic and bipolar disorders. We distributed the survey using social media, through snowball sampling, collecting both quantitative and qualitative data. The survey was available between May and June 2020. We used systematic text condensation to analyse qualitative data.ResultsTwo hundred and seventy-nine respondents replied, mostly mothers and partners. A majority experienced a reduction in health care for their family member. Most respondents did not receive any support during the lockdown. However, most found the information they received from the mental health services regarding their family members’ treatment as sufficient. The qualitative data analysis revealed that relatives experienced three major challenges: reductions in treatment for the family member; reduced organised daily activity for the family member; and an increased caretaker load. In the case of a future lockdown, they would prefer increased access to care compared with a normal situation; increased support for relatives; and enhanced information.ConclusionsMental health services in Norway did not manage to meet the needs of patients with severe mental illness and their relatives during the first COVID-19 lockdown. To be better prepared, Norwegian mental health services should consider prioritising infrastructure to ensure access to care and support for both patients and relatives. Digital tools and telephone calls are generally well accepted as substitutes for face-to-face contact.
Highlights
Many relatives of people with psychotic and bipolar disorders experience a high caregiver burden normally
Mental health services in Norway did not manage to meet the needs of patients with severe mental illness and their relatives during the first COVID-19 lockdown
Many European countries responded by closing the parts of mental health services that was not considered necessary for preventing serious acute exacerbation of illness or death; these precautions assumed that social distancing was the most effective means for controlling the spread of the virus [4]
Summary
Many relatives of people with psychotic and bipolar disorders experience a high caregiver burden normally. The relatives of people with psychotic and bipolar disorders tend to carry a high burden of care [1,2,3]. In the COVID-19 pandemic there were reports of deteriorating mental health in the general population of several European countries [5,6,7]. Unpublished observations from a Norwegian self-report survey distributed widely to reach people with psychotic and bipolar disorders soon after the first lockdown confirmed that there were subgroups among these patients that have become markedly worse during the lockdown (Barrett EA, Simonsen C, Aminoff SR, ten Velden Hegelstad W, Lagerberg TV, Melle I, Mork E, Romm KL: The COVID19 Pandemic Impact on Wellbeing and Mental Health Difficulties in People with Psychotic and Bipolar Disorders, under review)
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