Treatment and referral experiences of patients with type A aortic dissection and their families: a qualitative study

OBJECTIVES: This study aimed to analyse the experiences and feelings of patients with type A aortic dissection (TAAD) and their families during the medical treatment and referral process, investigate the entire process’s needs and problems and provide evidence for improving the aortic dissection treatment system. DESIGN: A qualitative descriptive design using a phenomenological study. Face-to-face semistructured interviews were conducted. Thematic analysis was used to analyse the interview data, which was transcribed verbatim. SETTING: Department of Cardiovascular Surgery of Shanxi Bethune Hospital in China. PARTICIPANTS: Fifteen family groups, consisting of patients with TAAD who underwent surgical treatment and their families, were selected. RESULTS: Three primary themes were discussed and developed. Theme 1: the experiences of medical treatment and referral (confusion at the onset; complex inner feelings and emotional expressions of the medical treatment and referral; preoperative inner conflict); theme 2: problems with the TAAD medical treatment system (the quality of diagnosis and medical treatment needs to be improved; deficiency of medical system policies and procedures); and theme 3: real demands (demands for TAAD-related knowledge and access to the disease; economic-related demands). CONCLUSION: Patients with TAAD and their families encounter complex inner experiences, multiple requirements and numerous challenges during the medical treatment and referral process. It is advised that the treatment and referral system of TAAD in China needs to be improved. Future research and clinical practice should standardise diagnosis and treatment training, establish a fast channel for TAAD to prioritise treatment, popularise aortic dissection-related knowledge and improve the funding system.