Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

Abstract

Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Methods: The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Results: Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers. Conclusion: Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role.