Experiences of social isolation and loneliness in chronic kidney disease: a secondary qualitative analysis

Key Points Loneliness and social isolation are increasingly recognized as global public health issues; however, little is known about the patient and caregiver experience in CKD. We used qualitative data to explore the experiences of loneliness and social isolation from the perspective of patients and caregivers. Background Many patients with CKD experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health. We aimed to describe the perspectives of patients with CKD and their caregivers on loneliness and social isolation, to inform strategies to increase social participation. Methods A secondary analysis of qualitative data from the Standardized Outcomes in Nephrology initiative dataset (36 focus groups, three Delphi surveys, and seven consensus workshops) was conducted. We extracted and thematically analyzed data from patients with CKD, including those receiving hemodialysis or peritoneal dialysis and those with a kidney transplant, as well as their caregivers, on the perspectives and experiences of loneliness and social isolation. Results Collectively, the studies included 1261 patients and caregivers from 25 countries. Six themes were identified: restricted by the burdens of disease and treatment (withdrawing from social activities because of fatigue, consumed by the dialysis regimen, tethered to treatment, travel restrictions); external vulnerability (infection risk, anxiety of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); fending for oneself in health care (no one to relate to, lost in uncertainty, unmet psychosocial needs); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); and feeling ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others). Conclusions For patients with CKD and their caregivers, social participation is substantially impaired by the burden of CKD and its treatment and fear of risks to health such as infection. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Additional interventions are needed to improve social connections among people with CKD and their caregivers.