How Patients with an Uncertain Diagnosis Experience Intolerance of Uncertainty: A Grounded Theory Study

Zhongfang Yang1,2 *, Xia Zhao3 *, Zheng Zhu,1,2 Yanfen Fu,4 Yan Hu1,2 1School of Nursing, Fudan University, Shanghai, People’s Republic of China; 2Fudan University Centre for Evidence-based Nursing: A Joanna Briggs Institute Centre of Excellence, Shanghai, People’s Republic of China; 3Peking Union Medical College Hospital, Beijing, People’s Republic of China; 4School of Nursing, Dali University, Dali, Yunnan, Province, People’s Republic of China*These authors contributed equally to this workCorrespondence: Zheng ZhuSchool of Nursing, Fudan University, Shanghai, China; and Director of Fudan University Centre for Evidence-based Nursing: A Joanna Briggs Institute Centre of Excellence, 305 Fenglin Road, Xuhui District, Shanghai, 200032, People’s Republic of ChinaTel +86 21-6443 0093Email zhengzhu@fudan.edu.cnPurpose: To develop a conceptual framework to explain how patients with uncertain diagnoses experience intolerance of uncertainty (IU) in order to achieve an in-depth understanding of the process of facing uncertainty in this population.Patients and Methods: A grounded theory study using semi-structured interviews was conducted with 21 patients with uncertain diagnoses in China from December 2018 to March 2019. The coding process followed the procedures of Strauss and Corbin: open coding, axial coding, and selective coding.Results: We developed a conceptual framework called ‘Facing an Uncertain Diagnosis’. This framework considers not only the external and internal context of IU generation but also the ongoing process of how IU impacts patients’ psychological status, cognitive response, behavior, and decision making.Conclusion: We suggest that healthcare professionals should be aware of the high level of IU and its psychological, cognitive, and behavioral manifestations in patients with uncertain diagnoses. Healthcare professionals should also be more cautious in shared decision making with patients with uncertain diagnoses.Keywords: decision making, qualitative study, psychology research, behavior managemen