What are the symptom trajectories of self-regulatory fatigue among family caregivers of stroke survivors? A protocol of mixed-methods study in Chinese rehabilitation settings

Abstract

Introduction Stroke presents a considerable burden not only to patients but also to their families and society at large. In many instances, stroke patients opt for home rehabilitation, relying on family caregivers for daily assistance. This dynamic significantly influences the physiological, psychological and social well-being of these caregivers. Despite its importance, the phenomenon of self-regulatory fatigue (SRF) among family caregivers has received insufficient attention in the literature. Therefore, the objective of this study is to investigate the levels of SRF, the characteristics of associated symptoms and the trajectories of symptom change experienced by family caregivers of stroke patients. Methods and analysis This research employs a mixed-methods approach, combining a cross-sectional study with a prospective longitudinal quantitative and qualitative design. The Chinese version of the SRF Scale and the Chinese version of Patient-Reported Outcomes Measurement Information System profile-29 are used to assess SRF, psychological and physiological symptoms, and related functional outcomes among family caregivers of stroke patients. Latent class growth analysis will be employed to model the heterogeneous developmental trajectories of SRF-related symptoms among family caregivers of stroke patients. Reflexive thematic analysis will be employed to analyse, organise and summarise qualitative data, to identify the experiences and management needs related to SRF among family caregivers during home care. Through this comprehensive mixed-methods approach, the study aims to: investigate the levels of SRF experienced by family caregivers of stroke patients, identify patterns and trajectories of related symptoms. The integration of cross-sectional and longitudinal data allows for a thorough examination of both immediate and long-term aspects of caregiver experiences, providing valuable insights into the complex dynamics of SRF in this population. Ethics and dissemination The study protocol was approved by the Medical Ethics Committee of the University of South China (approval number 2023-NHHL-051). Data collection was authorised by the ethics committees of the First Affiliated Hospital, Second Affiliated Hospital and Nanhua Affiliated Hospital of the University of South China. The results of this study will be disseminated through publication in pertinent peer-reviewed journals, presentation at local and international conferences, and communication with all relevant stakeholders. Trial registration number ChiCTR2400082717.