ABSTRACT
Background Informal care is vital to many people with severe mental illness under normal circumstances. Little is known about how extraordinary circumstances affect relatives with a family member with mental illness. This study investigated the consequences of the first COVID-19 lockdown in Norway from the perspective of relatives of persons with psychotic- and/or bipolar disorders: What were the challenges and for whom? Method Relatives were invited to complete an online survey shortly after the first lockdown was initiated. Both quantitative and qualitative data were collected concerning experiences of relatives’ own and their affected family members’ health and situation. Two hundred and seventy-nine relatives completed the survey, mostly mothers and partners. Results One-third of the relatives reported considerable deterioration in their family members’ mental health, and a substantial minority worried about severe self-harm or suicide. Main themes in the qualitative analyses were “Isolation and its effects on mental health”, “Worrying about the pandemic and its consequences”, “Increased symptomatology” and “Suicide”. Being a relative during the lockdown put heavy strain on the relatives’ own health, in particular disturbance of sleep, concentration, and the ability to take care of others in the family. Relatives of family members with psychotic bipolar disorder, not currently in treatment, or living with their family experienced the situation especially challenging. Conclusions Many relatives found the first lockdown hard for their family. Efforts to integrate relatives’ perspectives in health care and contingency plans under normal circumstances could potentially alleviate some of the extra burden experienced by families during extraordinary circumstances. Supplementary Information The online version contains supplementary material available at 10.1186/s12889-022-13458-5.
ABSTRACT
BACKGROUND: Many 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. AIMS: Explore 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 SETTING: We 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. RESULTS: Two 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. CONCLUSIONS: 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. 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.