What are the experiences and concerns raised on an international online forum by caregivers of patients with chronic kidney disease?

Abstract

Chronic kidney disease (CKD) is a health condition which has prolonged symptoms and treatment options which impact a patient’s quality of life. Research has addressed the psychosocial impacts for patients living with CKD, however psychological and physiological impacts on the patient’s caregiver have been overlooked. Social support can improve caregivers’ quality of life, with emerging research exploring online social support. This study employed qualitative content analysis to examine 159 posts on an online international forum: Caregivers of Patients with Kidney Disease. The Research Question addressed by this study was: What are the experiences and concerns raised on an online international forum by caregivers of patients with chronic kidney disease? The process included collection and familiarisation of posts, which were then coded using verbatim words and phrases. Next, codes were arranged into 71 sub-categories, 12 categories and then grouped into three themes: Experiences of caregivers of patients with kidney disease, Use of online social support and Caregiver knowledge. Findings from this study highlight the psychological and physical challenges that caregivers of patients with CKD experience. This study provides valuable insight into the gap in caregiver knowledge and their need to seek online peer support on topics including: advice on patient diet; clinical management; symptoms; and how to support the patient to adhere to diet and medications. This study highlights how caregiver forums can inform support strategies from healthcare professionals to increase caregiver involvement in treatment and education options, as well as tangible assistance to support the caregiver and patients’ needs.