Using an international online forum to explore perspectives of caregivers of patients with chronic kidney disease

Background Caregivers of patients with chronic kidney disease (CKD) experience significant burden of care. Online forums provide an important platform for peer connection and expression of perspectives and concerns, but have not been used to capture consumer experiences in CKD research. Social support can improve caregivers’ quality of life, with emerging research exploring online social support. Method This study employed qualitative content analysis to examine 159 posts on an online international forum: Caregivers of Patients with Kidney Disease to examine the experiences and concerns raised by caregivers of patients with CKD. Posts were coded using verbatim words and phrases, then arranged into three overarching themes, 12 categories and 71 sub-categories. Results The overarching themes were Impact to Carer Wellbeing; Use of Online Social Support; Caregiver Knowledge. Online posts highlighted the psychological and physical challenges for caregivers of patients with CKD including social isolation, helplessness and the impact to paid employment. Participants used online social support to connect with peers and seek advice from the forum community on topics including: the patient’s diet; clinical management; CKD symptoms; and how to support the patient to adhere to diet and medications. Conclusion This study provides valuable insight into gaps in caregiver knowledge and their need to seek online peer support. 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 caregivers’ and patients’ needs, such as transportation services for dialysis patients. Graphical abstract