Translation and Adaptation of the Child and Youth Resilience Measure-Revised and Rugged Resilience Measure: A Mixed-Method Study Among Adolescents in Nepal.

Maintenance hemodialysis (MHD) is a life-sustaining treatment for patients with kidney failure; however, it does not eliminate the substantial symptom burden associated with advanced kidney disease and long-term dialysis treatment. Patients undergoing MHD frequently experience multiple concurrent symptoms, including fatigue, pruritus, sleep disturbance, muscle cramps, gastrointestinal discomfort, and psychological distress. Rather than occurring in isolation, these symptoms may coexist and interact as symptom-clusters, generally defined as groups of 2 or more interrelated symptoms. Recent studies have identified several clinically meaningful symptom-clusters in patients undergoing MHD, including sleep-related, gastrointestinal, skin-related, pain or discomfort, and psychological symptom-clusters. Because interactions among co-occurring symptoms may compound patients’ overall symptom experience and impair physical, psychological, and functional well-being, a symptom-cluster approach may provide a more comprehensive basis for symptom-assessment and management than an exclusive focus on individual symptoms. Beyond their physical and psychological consequences, persistent symptom-clusters may also be associated with patients’ social functioning. Social alienation, characterized by a subjective sense of estrangement or disconnection from oneself and others and accompanied by feelings such as distrust and meaninglessness, has received increasing attention in patients undergoing long-term hemodialysis. The demanding schedule of dialysis, persistent fatigue and physical limitations, disruptions to employment and family roles, and other illness-related constraints may reduce opportunities and motivation for social participation. Qualitative evidence from patients with chronic kidney disease (CKD) further suggests that fatigue, treatment demands, and concerns related to illness can contribute to withdrawal from social activities and a sense of disconnection from others. Nevertheless, although previous research has examined symptom burden and symptom-clusters in MHD populations, the association between the overall experience of symptom-clusters and social alienation remains insufficiently understood. Fear of disease progression (FoP) may represent an important psychological process underlying this association. FoP refers to concerns about future deterioration in health and its potential physical, psychological, social, and family consequences. For patients who depend on long-term hemodialysis, recurrent or worsening symptoms may serve as salient reminders of illness and may be interpreted as signs of declining health, complications, or loss of control. Such perceptions may heighten concerns about future health and functioning, which may, in turn, be associated with avoidance behaviors, reduced social participation, and greater feelings of alienation. A recent study among patients undergoing MHD found that FoP statistically mediated the association between illness perception and social alienation, supporting its potential role as a psychological pathway linking patients’ perceptions of illness-related threats to impaired social adaptation. However, whether FoP is similarly involved in the association between multidimensional symptom-cluster severity and social alienation has not been adequately examined.