An exploration of symptom burden and its management in Saudi Arabian patients receiving haemodialysis, and their caregivers: A mixed methods study

Abstract

There is a lack of knowledge regarding symptom burden and the experiences of patients receiving HD and their caregivers, particularly in Saudi Arabia. Therefore, this study aims to explore symptom burden, the factors predicting symptoms and the self-management strategies in patients undergoing HD. It also aims to assess the level of burden in the caregivers of these patients and the factors that may influence the reported level of caregiver burden. The study used a mixed-methods, sequential, explanatory design consisting of two phases: phase 1 involved a cross-sectional study design, with a convenience sample of 141 patients, and 61 caregivers. Phase 2 of the study was a qualitative semi-structural interviews, with 13 eligible patients currently receiving HD and 9 of their associated caregivers. Results: Of the 32 measured symptoms, patients reported having a mean of 10 ± 5 where fatigue was the most prevalent symptom, followed by itching, bone pain, and muscle cramps. Being female, unmarried, and having one or more health conditions were associated with increasing symptom burden in patients receiving HD. Caregiver burden was positively associated with being older and female, and having comorbidity condition. The study also found a positive correlation between the total number of symptom in patients receiving HD and caregiver burden levels. Three overarching themes were revealed from patient interviews, the holistic impact of symptom burden, factors influencing symptoms and symptom management. For caregivers of patients receiving HD, three themes were identified in caregiver interviews: positive caregiving experiences, factors influencing caregiver experience and negative caregiving experiences. Cultural beliefs and religion had a significant impact on the levels of reported symptoms, as well as reported caregiver burden in Saudi Arabia. Discussion: Future research should consider symptom assessment, effective patient care and the promotion of appropriate symptom management in patients receiving HD. Any intervention targeting symptom assessment and management as well as caregiver burden should take into consideration the influence of cultural values and religious beliefs on this population. Understanding the interaction between symptoms may also contribute to a reduction in symptom burden in this population.