Background: Stroke is a leading cause of disability and death worldwide, impacting millions of individuals and their families each year. In the context of traditional Chinese culture and the limited development of the health care system, family caregivers are responsible for the majority of caregiving tasks for stroke survivors in China. The complex, long-term and highly intensive responsibilities of caregiving present significant challenges and needs, impacting the well-being of family caregivers and posing risks for various physical and mental health issues. This may result in family caregivers being unable to adequately support their loved ones, highlighting the need for society to identify the specific needs of these family caregivers. However, research focusing on the needs of family caregivers of stroke survivors is scarce in China.

Aim: The overall aim of this thesis was to explore the experiences and needs of family caregivers of stroke survivors.

Method: This research was conducted in one of the four municipalities in China. The experiences and needs of family caregivers were explored from their own perspective through semistructured interviews (n = 26). Experiences were analysed via thematic analysis (Study I), and to identify needs, deductive qualitative content analysis (Study II) was performed via a categorization matrix based on the Chinese version of the Caregiver Task Inventory (CTI-25). The original version of the CTI-45, which included more items related to needs, was translated into Mandarin and psychometrically evaluated in four hospitals (n = 251) (Study III). Finally, a multicentre cross-sectional study was conducted to explore needs and associations between needs and health outcomes for family caregivers (n = 543) of stroke survivors via the CTI-45 (Study IV).

Findings: The participants described their experience of being a family caregiver as living on the edge, where their lives were pulled in multiple directions, creating instability and diminishing their well-being and health (Study I). The needs expressed encompassed both the existing categories outlined in the CTI-25, which focus on tasks related to caregiving, such as providing physical care and emotional support and managing personal relationships, as well as additional financial needs related to the long-term costs of care and potential income loss (Study II). To further assess needs, translation and psychometric evaluation of a Mandarin version of the CTI-45 were performed in Study III, which demonstrated that the instrument exhibited high internal consistency, making it a reliable and valid instrument for assessing the multidimensional needs of family caregivers (Study III). The results from Study IV indicated that the needs of participants focused mainly on intrapersonal tasks and interpersonal relationships. However, there were large individual variations. Moreover, increased needs were found to be associated with higher levels of depression and anxiety as well as lower levels of physical health and mental health.

Conclusion: This study provides valuable insights into the needs of family caregivers of stroke survivors, highlighting the importance of financial needs and their impact on overall health outcomes. The validated Mandarin version of the CTI-45 offers a robust tool for assessing these needs, paving the way for future interventions and support programs tailored to the unique challenges faced by these caregivers. Additionally, the findings highlight the need to improve the welfare system to better support family caregivers. Future research should include longitudinal studies to more comprehensively understand the evolving needs of family caregivers over time and to develop and test long-term, effective support strategies.