Caregiving Experience of Unpaid Carers of People with Schizophrenia in Taiwan: A Qualitative Study

The Carer Support Centre (CSC) was established under the Ten-Year Long-Term Care Project 2.0 to provide multiple support services to carers. Based on the carer referral mechanism, long-term care case managers, who primarily conduct needs assessments for care recipients, will refer carers to the CSC for support if they recognise that the carers are experiencing significant burdens. However, the CSC faced challenges in better supporting carers of people with mental health issues, as it primarily assisted carers of individuals aged 65 or older with physical disabilities before the implementation of LTC 2.0.

Therefore, this study draws on the concept of carer burden to understand the challenges faced by carers of people with schizophrenia (PWS). The findings help contextualize carers' experiences within the framework of carer support policy. Insights were gathered from thirty carers through semi-structured interviews.

The subjective burden experienced by carers of PWS was identified as "the experience of frustration." Many carers expressed a strong sense of self-blame, coupled with guilt and regret for not providing enough attention to the PWS in earlier life. Furthermore, carers often felt undermined and devalued by the negative perceptions of other family members or practitioners. In terms of objective burden, "the impacts of caregiving on carers’ lives and well-being" were also identified. Many carers reported self-withdrawing from social interactions to avoid unhelpful or intrusive conversations. Most notably, carers experienced severe mental health issues, including suicide attempts, especially before their relative was officially diagnosed, and lacked adequate social care support during this period.

Based on these findings, the CSC could implement interventions to strengthen carers' confidence and belief in their roles, including support groups exclusively for carers of PWS to enhance social participation. Additionally, CSC services should extend to carers whose relatives have not yet received a confirmed diagnosis.