Decision‐making trade‐offs: A classic grounded theory study of Chinese acute leukaemia patients and their family caregivers across the trajectory of illness

Abstract

Aim and ObjectivesTo identify the main concern of patients with acute leukaemia and their family caregivers in the process of coping with the disease and to determine how patients and their family caregivers address these concerns on an ongoing basis.BackgroundAcute leukaemia is a progressive disease that may lead to physical problems and mental stress in patients. It also affects the psychological well‐being and quality of life of family caregivers. Nevertheless, few studies explore the behavioural pattern across the trajectories of illness in Chinese patients with acute leukaemia and their family caregivers.DesignGrounded theory.MethodsTheoretical sampling was performed to collect 14 sets of secondary data from Bilibili platform, literature, articles from WeChat official account, press releases and documentary. A total of 29 participants were selected to participate in semistructured interviews from the haematology department of a tertiary care hospital in Fuzhou, Fujian Province from January 2021 to November 2021. Data collection and analysis were conducted in a synchronous iterative manner until theoretical saturation was reached. Data analysis included open coding, selective coding and constant comparison, et al. The CCOREQ checklist was utilised.ResultsThis study discovered the main concern (i.e. seeking survival) and main behavioural pattern of how patients with acute leukaemia and their family caregivers addressed this issue. Three decision‐making strategies, ‘responding’ ‘accommodating’ and ‘resisting’ also emerged.ConclusionsThis study explored the behavioural pattern of patients with acute leukaemia and their family caregivers in the process of coping with disease. The study found that the main concern of patients with acute leukaemia and their family caregivers, and provided a theoretical basis for disease management and nursing interventions for them in the future.Relevance to Clinical PracticeThe findings of this study contribute to nursing knowledge, practice in the field of patients' participation in decision‐making.Patient or Public ContributionDue to the characteristics of grounded theory (no presupposition of research questions), the interviews in this study mainly focus on theory generation. Participants were not asked to assess the burden of the intervention and the time required to participate in the study, as interviews were conducted for theory generation. This study may assist patients and family caregivers in obtaining better understand and adapt to changes across the trajectory of illness, as well as to promote public destigmatisation of acute leukaemia and reforms in family‐hospital‐community diversified care.