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.

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

This study aimed to translate the Caregiver Task Inventory-45 (CTI-45) into Mandarin and evaluate its psychometric properties for use among family caregivers of stroke survivors in China.

Methods

This methodological study included cognitive interviews and a psychometric evaluation of the CTI-45. Questionnaires were distributed to family caregivers at four tertiary hospitals in Tianjin, China. In addition to the eight family caregivers who participated in the cognitive interviews, 251 family caregivers of stroke survivors aged ≥ 18 years, who were biologically or legally related to the survivors, were providing unpaid home care, and were proficient in Mandarin, completed the survey. The CTI-45 was translated according to the European Organisation for Research and Treatment of Cancer (EORTC) translation protocol. Cognitive interviews were then conducted to evaluate the Mandarin CTI-45 using ordinal confirmatory factor analysis (CFA). The suggested one- and three-factor models were both evaluated. Internal consistency reliability was assessed using ordinal alpha and ordinal omega coefficients.

Results

The suggested three-factor model was superior compared to the one-factor model and demonstrated acceptable model fit (RMSEA = 0.042, CFI = 0.996, TLI = 0.995, SRMR = 0.072). All three scales demonstrated excellent reliability according to ordinal alpha and ordinal omega: Direct care to the patient 0.96/0.92, Intrapersonal tasks 0.97/0.94, and Interpersonal ties 0.95/0.90.

Conclusions

The Mandarin version of the CTI-45 demonstrated good psychometric properties and could be used to assess the multidimensional care needs of family caregivers caring for stroke survivors.