The Caregiving Experience of Unpaid Carers of People with Schizophrenia in Taiwan : A Mixed Methods Study

: (Alternative Format Thesis)

Abstract

Schizophrenia is a major concern for mental health services globally and is considered one of the most impairing mental health conditions in its acute stages. It not only deteriorates the cognitive abilities of the person living with it, leading to difficulties in managing daily life, but also significantly impacts their family members. Since the introduction of de-institutionalisation policies, which encouraged people with mental health problems to receive care at home, families have increasingly taken on the responsibility of providing care with support from home- and community-based services.

As in many countries, the responsibility of providing care in Taiwan often falls on family members who act as unpaid carers. Recent care policy reforms lead to a significant shift of the implementation of Taiwan’s Long-Term Care 2.0 (LTC 2.0) system in 2017, which extended entitlements to people with mental health problems, including schizophrenia and their carer. This offers families caring for a person with mental health problems an option of care service provision because prior to this reform, care for people with mental health problems was provided and regulated solely under the Mental Health Act, which is defined as the non-LTC 2.0 system in this thesis. The aim of this thesis is to explore the caregiving experiences of carers of people with schizophrenia, and how these experiences both shape and are shaped by mental health care and/or long-term care services.

This research focuses on three main areas: (1) the carer burden experienced by carers, (2) carer’s decision-making regarding the use of LTC 2.0 and/or non-LTC 2.0 services, and (3) carers’ views of long-term care services. Guided by the Stress Process Model, the study adopts a mixed-methods approach. Quantitative data were collected through a survey of 132 carers, examining factors such as family functioning, resilience, discrimination, and positive feelings of caregiving, and how these relate to carer burden. Additionally, semi-structured interviews were conducted with 30 carers who have experience with formal care services received by their relatives. Quantitative data were analysed using various inferential statistical methods, while qualitative data were analysed thematically.

First, the findings show that carer burden is not directly influenced by the care needs of the care recipient, but rather by carers’ self-perceptions and their ability to cope with caregiving. For example, some carers attributed the diagnosis of schizophrenia to their own perceived inadequacies or a lack of family support. Second, the decision to use LTC 2.0 or non-LTC 2.0 services was shaped by carers' relationship to the cared for, which influenced carers' expectations. A transition from the non-LTC 2.0 system to LTC 2.0 typically occurred when carers could no longer meet the care recipient's needs, either due to the carers’ inability to continue providing care or the deterioration of the care recipient's condition. LTC 2.0 was commonly perceived by carers of people with schizophrenia as a more intensive care option capable of consistently meeting those needs at home. Third, the study highlights carers’ perspectives on the long-term care services their relatives received. It found that the complexity of the care delivery system and limited knowledge of schizophrenia among care professionals created barriers to access. Moreover, some carers were excluded from accessing respite care because this entitlement was contingent on whether the care recipient are the user of long-term care services.

This study provides a novel understanding of informal care for people with schizophrenia based on carers' perspectives and highlights the need for social work practice and care policy to acknowledge and address the impact of mental health care on carers who are directly affected.

Date of Award	22 Apr 2026
Original language	English
Awarding Institution	University of Bath
Supervisor	Megan Robb (Supervisor), Jeremy Dixon (Supervisor), Demi Patsios (Supervisor) & Theodoros Papadopoulos (Supervisor)