The downward referral experiences of stroke caregivers in the regional medical alliance in China: A phenomenological study

The downward referral platform in the regional medical alliance has provided more possibilities to follow-up rehabilitation and transitional care for increasing stroke survivors, which also has the most contributions in the rational use of resources and health promotion of stroke survivors. However the downward referral rate is low compared to upward referral. At present, no scholars have explored the downward referral experiences of medical demanders from the perspective of qualitative study, and these experiences may also most truly reflect the influencing factors of their unwillingness to downward referral. Therefore, this study explored the subjective experiences of stroke caregivers who had experienced the downward referral, because stroke attacks often lead to lack of autonomy of patients themselves, making it difficult to complete interviews with them. A descriptive phenomenological study was adopted. A purposive sampling strategy was used to recruit 13 stroke caregivers. Interviews were guided by a semi-structured interview-guide encouraging interviewees to reflect on their experiences with downward referral. Coliazzi’s data analysis process was applied. The analysis of the data revealed 4 themes: coping challenges; disrupted information; gaps in medical and nursing transition, and potential enabling factors. The results of this study showed that the lack of knowledge of medical alliance, non-sharing of medical information and non-homogeneousness of medical quality were identified to be impeding positive attitude towards downward referral and be factors of bad experiences. Of course, the interviewees had positive experiences such as smooth referral and comfortable environment. These may be potential enabling factors to their attitude towards downward referral. The challenges and needs of medical demanders after downward referral are worthy of attention, and these should be solved by corresponding measures to improve the downward referral rate and referral experiences.