Needs and rights awareness of stroke survivors and caregivers in urban and rural China: a cross-sectional, multiple-centre questionnaire survey

OBJECTIVES: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings. SETTING: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded. PARTICIPANTS: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled. PRIMARY OUTCOME MEASURES: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively. RESULTS: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01). CONCLUSIONS: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.