Patient perspectives on loneliness and social isolation in people receiving kidney replacement therapy including kidney transplant recipients: An interview study.

Background: Poor social connections, in the form of loneliness and social isolation, are associated with adverse health outcomes. For people receiving kidney replacement therapy (KRT), the life-long treatment required to manage the disease contributes to constant disruptions to their lifestyles and social roles. This leads to an increased risk of poor social participation, loneliness and social isolation.
Aim: To describe experiences and perspectives of patients on loneliness and social isolation with people receiving kidney replacement therapy including those who have received a kidney transplant.
Methods: We conducted a thematic analysis of semi-structured interviews with people receiving kidney replacement therapy including kidney transplant recipients and people receiving dialysis across three renal units in Australia.
Results: Twenty one interviews were conducted and six themes were identified: disease burden undermining social participation (dietary and fluid restrictions limiting participation in events, deprived of a social life because of treatment demands); physical vulnerability and stigma necessitating social withdrawal (debilitating fatigue reducing social capacity, avoiding people to reduce the risk of infection, ashamed and embarrassed about own appearance, suffering alone); erosion of social identity (from organizer to outsider, falling behind peers in milestones, narrowing social conversations to illness); demands of sickness impinging on family (being a burden, displaced from roles and missing events, tension and misunderstanding); protecting agency by establishing boundaries (initiating limits on participation, investing in meaningful relationships, negotiating social expectations, preserving personal autonomy and identity); and seeking connectedness and support (strengthening bonds within trusted networks, fostering companionship through group activities and common interest, wanting guidance and mentorship from peers, leveraging technology to maintain social roles, cultivating connection within illness based communities).
Conclusions: For people receiving kidney replacement therapy, the burden of disease and treatment influences their ability to maintain social connections. Treatment demands, physical vulnerability, and feelings of shame contribute to social withdrawal and strain relationships with family and friends. Despite these challenges, participants demonstrated resilience by setting boundaries, prioritizing meaningful relationships, and seeking connection through trusted networks and peer support. Addressing loneliness in this population requires care that considers both medical needs and social support.