Abstract
Schizophrenia is a severe mental illness that greatly impacts the real-world functioning of patients. In India, caregivers are primarily responsible for their patients and function as their support system, often taking treatment decisions on their behalf. However, they may have insufficient knowledge of the illness, which can have a negative impact on their roles as effective caregivers. The knowledge of schizophrenia and its associations among caregivers has received very little research attention. To examine the knowledge of mental illness and its socio-demographic and psychosocial associations among caregivers of patients with schizophrenia. The objectives were to assess the knowledge of mental illness and its treatment in caregivers of patients with schizophrenia, to assess the socio-demographic and clinical associations of this knowledge, and to assess the caregivers' psychosocial variables associated with this knowledge. This cross-sectional observational data was taken from a larger study carried out between August 2018 and January 2021 at an urban tertiary care hospital in the capital city of India. One hundred fifty-eight patients with schizophrenia and their caregivers (n=158) were taken using purposive sampling. Knowledge of Mental Illness Scale was used to evaluate the knowledge and understanding of the illness and its treatment among caregivers. Caregivers coming to this institution in New Delhi were also assessed with respect to their demographic variables, caregiving experience, family functioning, coping strategies, available social support, psychological distress, quality of life, and spiritual, religious, and personal beliefs. The assessment also included demographic and clinical variables of the patients. Caregivers possessed relatively greater knowledge regarding the medication being taken (52.5%), its side effects (38%), and the diagnosis (36.1%). However, their knowledge was poorer with respect to the meaning and implications of the diagnosis (21.5%) and the purpose of the medication (10.1%). In multivariate regression analysis of these five domains with socio-demographic, clinical, and psychosocial variables; the knowledge of the diagnosis was associated with a family history of psychiatric illness in a second-degree relative, the total duration of treatment, and stigma in caregivers. The meaning of the diagnosis was associated with the environmental domain of quality of life and positive symptoms of the patient. Knowledge of medication was associated with the number of patient hospitalizations, caregivers supervising medications, caregiver age, and the total duration of illness. Knowledge of the purpose of medication was associated with the total duration of illness and patient positive symptoms. Knowledge of medication side effects was associated with the roles domain of family functioning, positive caregiving experience, patient negative symptoms, and the acceptance/redefinition domain of coping. A range of associations were examined in this study. Correct knowledge of schizophrenia is necessary to promote timely help-seeking, preventing a longer duration of untreated psychosis and a poor prognosis. In research, knowledge of illness is a construct with immense potential applicability. In patient care, this knowledge may help caregivers participate in treatment planning, improve patient functioning, and support their patients toward better functional outcomes.
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