Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

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