Understanding the Experience of Living With a Parent With Severe Mental Illness in China From Multiple Perspectives: A Qualitative Exploratory Study

Abstract

Extensive negative effects of parental mental illness on family life and children’s development have been widely studied across contexts and diagnosis of parental mental disorders. Several supportive interventions have proven to be effective and increasingly implemented in the service system in high-income countries. Little is known about this issue in resource-limited settings, such as China. This study aims to illuminate the experience of living with a parent with severe mental illness in China from multiple perspectives in a qualitative exploratory approach. It is hoped that findings will be used to inform further development or adaption of contextually appropriate and culturally sensitive target interventions in China. A series of in-depth individual interviews were conducted with four group of participants: children of parents with severe mental illness (COPSMI), parents living with severe mental illness (PSMI), other caregivers of the child in the family (OCGC), and service providers (SP). One overarching theme was identified from each group respectively: children live with complex and incomplete care, parenthood was like a roller coaster experience with primary care-giving roles often withheld from them, non-parental child caregivers took on a doubly challenging work, and most service providers are largely blind to the needs of children and the role of parenting in the patients they serve. In discussion, commonalities and uniqueness of experience living with parental severe mental illness in China were summarized to propose four recommendations: 1. Disclosure is inevitable and secrecy leads to significant negative consequences so that children are better to be informed with clear and appropriate information. 2. Empowering PSMIs to engage in parenting role could benefit both parents and children. 3. Clear systematic information and evidence-based guidance are needed to create shared understanding. 4. Needs of other family members should be also taken into consideration in the supportive service given the extent they engage in parenting role. 5. More data and evidence-based advocacy are needed to promote system change.