Description of the Lived Experiences of Family Caregivers for People With Mental Health Comorbidities

Mental health problems such as depression, anxiety, trauma, substance and alcohol use are common and a primary driver of disease burden globally. In Zambia, the prevalence of mental health problems is an estimated 20%. Mental health comorbidity, which is the occurrence of multiple mental health problems at the same time, is more common among impoverished communities. Over 60% of Zambians are classified as poor, a population particularly at-risk for the most severe and lifelong mental health conditions. Common risk factors for mental health comorbidities include domestic violence and stress, grief and loss, infections such as malaria, HIV and syphilis, and poverty which limits access to care and basic needs such as clean water, electricity and proper housing.

Individuals with mental health comorbidities in low resource settings are often cared for by family caregivers. Family caregivers opt to care for their relatives from home due to the stigma associated with having a relative hospitalized in a mental health facility. Further, limited healthcare resources and knowledge of mental health comorbidities make home-based care more accessible. While caring for an individual with mental health comorbidities can be a positive and rewarding experience, it can also lead to the caregiver experiencing disruptions in their social life, increased financial costs, reduced self-care, and other adverse emotional responses such as self-blame, burnout, anxiety and sadness. The COVID-19 pandemic has worsened the severity and frequency of mental health comorbidities, increasing burden and psychological reactions among caregivers, and in turn, impacting their ability to provide care. In addition, existing evidence suggests these psychological reactions impact adherence to public health measures that reduce risk of infection, sickness and death. Few studies have explored the perspectives of recipients of caregiver-provided mental health care, caregivers, and mental health experts on how best to care for individuals with pre-existing mental health comorbidities during the pandemic. Together, these key perspectives can provide deeper insights on how to increase access to services and resources for caregivers, coping skills, and inform future development of policy guidelines.

Aim This project aims to describe the lived experiences of family caregivers, including challenges, self-directed coping skills, and access to services and resources.

Research questions

• What are the experiences of family caregivers providing care for individuals with mental health comorbidities in low resource contexts during the COVID-19 pandemic?
• What resources are available to support family caregivers to enhance home-based care for individuals with mental health comorbidities?
• What are the recommendations from caregivers, recipients of care and mental health experts when caring for individuals with mental health comorbidities in low resource contexts during the COVID-19 pandemic?

• Mental health experts Inclusion criteria

• Provided counselling or psychiatric care to care-recipients during the COVID-19 pandemic
• Works within or around Lusaka city
• Willing to participate in the study Exclusion criteria

a. Did not interact with family caregivers extensively

• Family caregivers Inclusion criteria

• Provide unpaid care to a care-recipient during the COVID-19 pandemic
• Live in the same house with the care-recipient Exclusion criteria

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• Unrelated to care-recipient. Other carer's such as housekeepers that may assist with home-based care for care-recipients.
• Other relatives that assist with logistics (for example driving the patient to a hospital) but do not spend significant time with the patient.
• Care-recipients Inclusion criteria

• Experience one or more mental health problems as reported by either the caregiver or themselves
• Cared for by a family caregiver in a home setting during the COVID-19 pandemic
• Aged 15 years and above Exclusion criteria

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• Care-recipient's with severe mental health illness (e.g. psychosis, schizophrenia and severe dementia) that prevents them from giving informed consent.
• Care-recipients institutionalized in a mental health facility and not receiving care from a family caregiver during the COVID-19 pandemic