(see Poster Gallery) Caring for the Caregivers: Affiliate Stigma and Caring Burden Among Family Caregivers of Persons with Schizophrenia in Rural China

Background and Purpose: Anti-stigma and burden alleviation for family caregivers among persons diagnosed with schizophrenia (FCPWS) is attracting increasing attention from the academic and clinical bodies. Low- and middle-income countries (LMIC) has lagged behind the developed countries in the delivery of such specialized, multi-component care to FCPWS. A key factor contributing to this lag is the limited available data demonstrating the updating severity level of stigma and caring burden and their correlates in LMIC. This study aimed to fill this gap by examining the level of stigma and caring burden, and identify the correlates among FCPWS in rural China.

Methods: This study used baseline data from a parallel, three-arm, single-blinded, cluster randomized control trial with 253 FCPWS in Xinjin county, Sichuan province, China, 2019. Stigma and caring burden were measured by Affiliate Self- Stigma Scale and Zarit Burden Interview Short Form. Univariable and multivariable regression was performed to explore the correlates of stigma and burden. Most of the participants are married (83.40%), aged over 60 years old (54.94%), with a fulltime job (64.43%) and a secondary education (71.54%), and having less than 500 RMB income per month (49.01%). 45.06% participants have a spousal relationship with the persons diagnosed with schizophrenia (PWS).

Results: 78.66% and 95.26% of FCPWS reported experiencing high and severe level of affiliate stigma and burden as a result of caring for a relative with schizophrenia. Univariate analyses revealed that high affiliate stigma of caregivers was associated with middle aged and unemployed state, while high caring burden of caregivers was associated with female, elder aged and low income. Bivariate correlations analysis showed that affiliate stigma was significantly associated with caring burden, psychiatric knowledge, and quality of life, while caring burden was significantly associated with psychiatric knowledge, quality of life and face concern. Multivariable regression analyses identified that affiliate stigma was significantly linked with caring burden, psychiatric knowledge and quality of life, while caring burden was significantly linked with affiliate stigma, quality of life and face concern.

Conclusions and implications: In rural China, caregivers who reported high caring burden and poor psychiatric knowledge and quality of life were more likely to perceive high affiliate stigma. Caregivers who reported high affiliate stigma, poor quality of life and severe face concern were more likely to perceive high caring burden. Future interventions aiming to reduce affiliate stigma and caring burden may benefit from improving psychiatric literacy and quality of life, and alleviating face concern among FCPWS. Policies and programs should be cognizant of the needs of caregivers living in the low- and middle-countries and work in addition to providing care for a relative with schizophrenia in order to better support them.