Primary and secondary caregiver burden of cognitive impairment associated with schizophrenia: a qualitative study based on caregiver interviews

Abstract Cognitive impairment associated with schizophrenia (CIAS) places a significant burden on patients and caregivers. This study explored the burden experienced by primary (informal) and secondary (formal) caregivers. A secondary qualitative analysis was performed on interviews from a Schizophrenia Cognition Rating Scale (SCoRS) confirmation study. Thematic analysis was utilised to investigate the characteristics of caregiver burden. Quotes were analysed across 3 levels (Level 1: caregiver experience of patient cognitive symptoms; Level 2: caregiver experience of patient burden; Level 3: overarching caregiver burden) to establish themes. Subsequently, themes were mapped to SCoRS domains. Twenty primary caregivers and 20 secondary caregivers were enrolled. Caregivers described patient difficulties with memory, learning, social communication, and everyday tasks. Caregivers assisted patients by engaging in sustained teaching for new activities, encouraging social communication and repeating reminders to accomplish tasks. Caregiver burden was substantial among both groups. Thematic analysis identified 2 main themes: caregiving difficulty and caregiving necessity. These themes reflected the extensive roles and responsibilities assumed by caregivers due to the impacts of CIAS symptoms. Illustrative quotes were reported for 60% of primary caregivers and 55% of secondary caregivers. Six of the 8 SCoRS domains (memory, learning, attention, problem-solving, language, social cognition)were mapped to themes identified at each level. A high level of objective caregiving burden was found in relation to CIAS symptoms among primary and secondary caregivers. The SCoRS domains of memory, learning, attention, problem-solving, language and social cognition are key areas to treat in patients with schizophrenia to reduce caregiver burden.