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

After the extension of the state Long-Term Care Project (LTC 2.0) in Taiwan in 2017, people with schizophrenia (PWS) and their carers are now included in the scope of the service users. However, fewer PWS could pass the needs assessment because of limitations in the assessment mechanisms. For example, the majority of the scales are used to assess physical health care needs, with only two scales used to assess mental health. Additionally, due to current policy changes, the carer support centres provided under LTC 2.0 can only offer support to those carers whose PWS are service users of LTC 2.0. In other words, carers were unable to use LTC 2.0 if the person they care for did not pass the assessment. Given the government's intention to integrate PWS and their carers into LTC 2.0, there is a need to explore the carers’ needs in providing care. Therefore, understanding the caregiving experience of carers of PWS would benefit the current state long-term care services. This study aims to explore the caregiving experience of carers who care for PWS and to understand their perspective toward LTC 2.0, allowing social workers and practitioners to better comprehend their specific caregiving needs.

Drawing on the concept of caregiver burden, this study reports on the views of thirty carers of PWS in Taiwan to discover their experiences in caregiving tasks. A face-to-face and semi-structured in-depth qualitative interview study was conducted in Taiwan between May and July 2023. The interviews were analysed using thematic analysis.

Participants identified that care services were not available to them before the diagnosis of schizophrenia in their relative. Prior to the diagnosis, participants experienced a severe caregiving burden with limited social support. Family carers sought medical help when their relative first exhibited symptoms. However, the study found that both health and social care departments had weak connections, as carers were not referred to LTC 2.0 from the hospital side. Additionally, the knowledge about the caregiving needs of professional workers, such as social workers, is likely to affect whether the family can be involved in LTC 2.0 in the short term. Participants reported feeling conflicted when their relative was admitted to the hospital and experienced frustration toward mental health services. Participants also indicated that what they mostly need is someone who can regularly accompany their relative to allow them to temporarily hand over caregiving responsibilities. Additionally, instead of a mere care plan, assistance in the arrangement of a future life plan is needed for PWS.

The findings have implications for proposals to reform the current LTC 2.0 and establish future care policies. Given that a certain amount of time will be needed to get a diagnosis, LTC 2.0 should allow those carers whose relatives are not service users of LTC 2.0 to receive support from caregiver support centres. Education programs should be created for professional workers to better assist PWS and their carers in accessing formal services when care needs arise.