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.

Background

In China, family caregivers are usually the main carers of relatives after stroke due to traditional Chinese culture and the limited development of the primary healthcare system. This responsibility often results in burdens and negative health outcomes. However, family caregivers seldom receive support. To improve informal care, as well as the health and well-being of family caregivers, it is important to identify their needs.

Objective

This study aimed to deductively explore the needs of family members caring for stroke survivors in China.

Methods

Twenty-six semi-structured interviews were performed with family caregivers of stroke survivors who were selected from one city and three communities by purposive sampling. A deductive qualitative content analysis method was performed by using the Caregiver Task Inventory-25 (CTI-25), an instrument measuring the needs of family caregivers, as a framework.

Results

All subscales, as well as all belonging items in the CTI-25, were identified in the present study, meaning that the family caregivers had needs related to learning to cope with new role, providing care according to care-receiver's needs, managing own emotional needs, appraising supportive resources, and balancing caregiving needs and one's own needs. Moreover, needs related to financial support, both direct and indirect, were identified but not part of the CTI-25.

Conclusion

These findings identified that family caregivers of stroke survivors in China had various needs, which is important knowledge when assessing needs and improving health care for family caregivers. Cultural adjustments and modifications should be made if CTI-25 is used in mainland China. This study also indicated a comprehensive and holistic perspective (individual, community, and social level) when identifying, assessing needs or implementing interventions to support family caregivers.

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers’ experience of caring for their relatives in China.

Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.

Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.

Findings: Family caregivers’ experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.

Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.