EXPERIENCE OF LONELINESS AND SOCIAL ISOLATION IN PATIENTS WITH CHRONIC KIDNEY DISEASE AND THEIR CAREGIVERS.
AMANDA SLUITER1,2, ROSANNA CAZZOLLI1,2, ALLISON JAURE1,2, NICOLE SCHOLES-ROBERTSON1,3, KARINE MANERA1,2 1Centre Of Kidney Research, Westmead, NSW, Australia2University of Sydney, Sydney, NSW, Australia3Flinders University, Adelaide, SA, Australia
Abstract
Aim: To describe the perspectives of patients and their caregivers on loneliness and isolation, including those with chronic kidney disease (CKD), receiving dialysis, and with a kidney transplant.
Background: Loneliness and social isolation are major public health issues affecting people with chronic diseases, however, little is known about the patient and caregiver experience in CKD.
Methods: A secondary analysis of qualitative data from 36 focus groups, three Delphi surveys and seven consensus workshops through the Standardised Outcomes in Nephrology (SONG) initiative was conducted.
Results: Data from 1260 patients and caregivers was analysed. Six themes were identified; constricted to the burden of disease and treatment (withdrawing from social activities due to fatigue, consumed by the dialysis regimen, revolving around demands of treatment, travel restrictions); vulnerable in the external environment (concerns of infection risk, dangers of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); feeling excluded and ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others); and disempowered in healthcare exacerbating isolation (no one to relate to, lost in uncertainty, unmet psychosocial needs).
Conclusions: Patients and caregivers endure loneliness and isolation as their social participation is impaired by the burden of the disease and treatment, physical limitations and fear of risks to health. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Interventions are needed to improve social connections among people with CKD and their caregivers for better mental and physical health outcomes.