“Sometimes It’s Difficult to Have a Normal Life”: Results from a Qualitative Study Exploring Caregiver Burden in Schizophrenia

Abstract

Objectives. As a disease typified by early onset and chronic disease course, caring for a person with schizophrenia may have a significant impact on caregivers' lives. This study aimed to investigate the subjective experiences of caregivers of people with schizophrenia as a means of understanding “caregiver burden” in this population. Methods. Face-to-face qualitative interviews were conducted with a diverse sample of 19 US-English speaking caregivers of people with schizophrenia (who were at least moderately ill). Interview transcripts were analyzed using grounded theory methods and findings used to inform the development of a preliminary conceptual model outlining caregivers' experiences. Results. Findings support assertions that people with schizophrenia were largely dependent upon caregivers for the provision of care and caregivers subsequently reported lacking time for themselves and their other responsibilities (e.g., family and work). Caregiver burden frequently manifested as detriments in physical (e.g., fatigue, sickness) and emotional well-being (e.g., depression and anxiety). Conclusions. Caring for a person with schizophrenia has a significant impact on the lives of informal (unpaid) caregivers and alleviating caregiver burden is critical for managing individual and societal costs. Future research should concentrate on establishing reliable and valid means of assessing burden among caregivers of persons with schizophrenia to inform the development and evaluation of interventions for reducing this burden.

Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population

“…However, similar to this study, Gater et al's [28] qualitative study showed that patients were dependent on caregivers for support. This burden is likely to impact negatively on the quality of life and may include physical and emotional health as well as psychological and social well-being of the carer [16].…”

“…Awad and Voruganti [18] point to cultural factors that may in part play a role in the expression of caregiver burden and cited that Caucasians compared to African-descent Americans report higher levels of caregiver burden and have an attitude of rejection toward the patients. Gater et al's [28] qualitative study showed that due to a strong focus on faith and religion, the concept of caregiver ''burden'' was less [18]. It is possible therefore that the community mental health intervention for treatment in Jamaica has a positive impact on mental health stability, thereby decreasing the burden of caregiving.…”

Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ)

“…Negative consequences were described as “caregiver burden” more than half a century ago [8]. Given their impact on both caregivers and patients, the interest in understanding and managing caregiver burden has grown exponentially, not only in schizophrenia [9] but also in all other chronic health conditions [10]. …”

The effects of caregivers' social anxiety, aggression and attachment style on the severity of schizophrenia

“…16 Kronik ruhsal bozukluğu olan bireylerin bakım verenlerinin yer aldığı çalışmalarda, bakım verenlerde öfke gösterilmiş ve bakım verenler bu öfkenin nedeninin hastaların davranışları olduğunu belirtmiş-lerdir. 17,18 Başka bir çalışmada, şizofreni hastalarının bakım verenlerindeki öfkenin nedenlerinin, bakım verenlerin aile içindeki rolleri ve şizofreni hastalarının tedavi süreçlerindeki maddi sorunlar olabileceği öne sürülmüştür. 3,19 Bu veriler ışığında şizofreni hastaları ile bakım verenleri arasındaki ilişkiyi sosyal anksiyete, saldırganlık ve bağlanma stilinin etkileyebileceğini düşünmekteyiz.…”