Care-giving by people with psychotic disorders in the second Australian prevalence study of psychosis

Increasing numbers of people living with psychosis are providing care for others, although the associated benefits and impacts are poorly understood. This innovative quantitative study investigated this life role using a population-based framework aiming to compare the mental health and functioning of those providing care to and/or receiving care from others. Care-giving provided by people with psychosis was examined using data from the second Australian prevalence survey of psychosis. This epidemiologically based sample (n = 1,822) was divided into four subgroups based on providing and/or receiving care from others. Independent functioning, cognitive functioning, social functioning, social connection and mental health were compared between the four subgroups. One in seven participants were providing care to others. The majority of carers were female and half were living with the care recipients. Caregivers were more likely to experience better illness course and were more commonly diagnosed with bipolar disorder. Almost one-third of caregivers reported that caring adversely affected their lives a great deal. Functioning and social connection were better in caregivers compared to non-caregivers, although cognitive functioning did not differ. People with psychosis who were neither providing nor receiving care were more likely to be single and perceive less warmth in their relationships. As expected, those only in receipt of care were living with greater disability and poorer illness course. It is relatively common to encounter people with psychosis who provide care to others in clinical settings, and women in particular combine care-giving with multiple other roles. Despite most experiencing some negative emotional impact, care-giving is associated with enhanced social relationships which may provide meaning and purpose for recovery. Care-giving roles should be addressed in recovery and care planning so as to provide people with psychosis with adequate information and support to fulfil these potentially important life roles.