Caregiver Burden When Caring for People Experiencing Psychosis
Treatment Advocacy Center, RESEARCH WEEKLY: By Molly Vencel
The Treatment Advocacy Center knows how challenging caring for someone with a severe mental illness can be. In a recent blog, staff member Sabah Muhammad shares her story of caring for her brother with severe mental illness. The challenges Sabah, her brother and her family face are not unique, and caring for someone with a severe mental illness can take a toll on caregivers.
In honor of the many family members caring for loved ones with severe mental illness, this Research Weekly shifts focus from those who have a mental illness to those who care for people with a mental illness.
Research study on caregiver burden
According to a newly published study by researchers from the University College London, there are factors that contribute to a higher burden on caregivers of people with first-episode psychosis.
The researchers surveyed 254 caregivers of individuals experiencing first-episode psychosis in both inpatient and outpatient settings between 2011 and 2014 in the United Kingdom. Caregiving experiences were measured on a scale from zero to 208, with a higher number representing a larger burden.
Caregiver burden is defined by the study authors as the psychological and physical toll that caring for a person with a severe mental illness may cause. Up to one-third of caregivers may have a diagnosable psychiatric disorder themselves, the researchers suggest. This adds to the overall impact of mental illness on society. Past research has supported the importance of caregivers in the recovery of individuals experiencing first-episode psychosis but has neglected the wellbeing of the caregivers themselves. Most commonly, caregivers of those with psychosis are family members. By limiting their chronic distress through mental health interventions, researchers suggest that outcomes for those with first-episode psychosis can be improved.
Risk factors for higher caregiver burden
The caregiver surveys assessed three main topics: illness beliefs, coping styles and caregiving experiences. Illness beliefs include perceptions of the illness such as an individual’s perceived control over their loved one’s illness or negative beliefs about the outcome of the illness. Coping styles are categorized as avoidant, problem- or emotion-focused.
Thirty-five predictors were associated with the caregiver’s expression of a high level of burden, according to the results. These included high perceived consequences, such as difficult behaviors, stigma and dependency on services and avoidant coping style. An avoidant coping style, which often includes denial and disengagement, was also associated with higher levels of stigma towards the individual with psychosis.
Surprisingly, the length of psychosis did not have a significant effect on the level of burden that caregivers experienced. Although the study did not follow caregivers over time, it is important to note that a longer period of psychosis did not mean a larger burden was felt.
Only two patient characteristics were associated with the level of caregiver burden, the patient’s relationship status and employment status. Both having a partner and having a job were associated with a lower burden on that individual’s caregiver. The authors highlighted that unemployment is extremely common in the early stages of experiencing psychosis and obtaining a job is often a major goal of recovery.
Despite the availability of caregiver support groups, resources and information, caregivers often report feeling marginalized and that well-being can be hard to maintain while caring for someone with a severe mental illness. The study researchers recommend that mental health services prioritize caregiver outcomes, as well as patient outcomes, by implementing evidence-based caregiver support programs.
Specific suggestions on how to combat some of the illness beliefs associated with a higher caregiver burden include normalizing the challenges of caregiving through increased awareness. Researchers suggest this may help counteract negative beliefs on severe mental illness and encourage a positive outlook on the future outcomes for the person with psychosis. At the same time, the study authors emphasized that supporting employment for individuals has the potential to improve outcomes for both the patient and the caregiver. By better targeting family members, loved ones and other caregivers in need of support, this will also improve the lives of people living with psychosis.
Molly Vencel is the research intern at the Treatment Advocacy Center.
•Charles, S., et. al. (June 2020). Carer subjective burden after first episode psychosis: Types and predictors. A multilevel statistical approach. International Journal of Social Psychiatry.