The experiences of caregivers of individuals with serious mental ill-health are complex and supports available to them need to reflect this by addressing factors beyond the care recipient’s diagnosis, a new Orygen study has found.
The study, published in BMC Psychiatry, examined existing research on the differences in the experiences of caregivers who provided care for loved ones with serious mental illnesses – specifically comparing schizophrenia spectrum disorders and bipolar disorders.
The study found that a person’s diagnosis itself may not be as influential in the experience of caregivers as other factors, such as symptoms experienced by the care recipient, or the difficulties they may have with day-to-day living.
George Karambelas, lead author of the study, said complex mental illnesses such as schizophrenia spectrum disorder and bipolar disorder can significantly impact the lives of those living with these diagnoses, including young people.
“Some of the difficulties caregivers of young people with complex mental ill-health may face when providing care include the time commitment of providing care, ongoing financial costs, longer term impacts on the caregiver’s physical and mental health, and the emotional effect of supporting a loved one experiencing difficulties with their own mental health.
“We wanted to explore if there were differences in caring experiences between these two groups, so that supports for caregivers could be tailored to the specific diagnosis the care recipient was living with.”
The results of the research suggested that caregivers, regardless of diagnosis, experienced similarly high levels of caregiver burden, characterised by difficulties experienced while providing care, and poor mental health outcomes.
“A minority of the existing research suggested that caregivers of loved ones with schizophrenia spectrum disorders had higher caregiver burden,” Karambelas said.
“However, no consistent reason for this was observed, and most of the existing research demonstrated no difference in caring experiences between these two groups.
“This finding supports the multidimensional nature of caregiving for someone beyond their diagnosis, and the need to consider this complexity when designing supports for caregivers,” he said.
Karambelas said this area of research is important for caregivers of young people with complex mental ill-health.
“Our findings could help improve outcomes for young people because they point to the need to develop supports that look beyond a young person’s diagnosis, to their wider needs, and to those who care for them.
“We believe these findings can provide further support for the need to include the young person’s wider support system into their mental health treatment plans.”
Karambelas said there were several clinical implications from the findings of the study.
“It’s important when considering clinical supports for caregivers that an accurate understanding of what the caregiver needs is captured.
“These needs are likely to change as caregivers navigate and adapt to their caring role, and as such, supports should also be flexible and responsive.
“Implementing caregiver supports early, including peer and psychological support, respite, financial or relief services, may help reduce longer-term impacts on the wellbeing of caregivers.” Karambelas said.