Melissa Nataatmadja1,2,3, Nicole Evangelidis4,5, Karine E Manera5,6, Yeoungjee Cho6,7,8, David W Johnson6,7,8, Jonathan C Craig9, Amanda Baumgart4,5, Camilla S Hanson4,5, Jenny Shen10, Chandana Guha4,5, Nicole Scholes-Robertson4,5, Allison Tong4,5. 1. Department of Nephrology, Sunshine Coast University Hospital, Birtinya, QLD, Australia. 2. Sunshine Coast Health Institute, Birtinya, QLD, Australia. 3. Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia. 4. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia. 5. Centre for Kidney Research, Children's Hospital at Westmead, Sydney, NSW, Australia. 6. Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia. 7. Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, QLD, Australia. 8. Translational Research Institute, Brisbane, QLD, Australia. 9. College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia. 10. Lundquist Institute at Harbor-UCLA Medical Center, Torrance, CA, USA.
Abstract
BACKGROUND: Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. METHODS: A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. RESULTS: A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). CONCLUSIONS: Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed.
BACKGROUND: Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. METHODS: A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. RESULTS: A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). CONCLUSIONS:Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed.
Authors: Nicole Scholes-Robertson; Talia Gutman; Martin Howell; Jonathan C Craig; Rachel Chalmers; Allison Tong Journal: Kidney Int Rep Date: 2021-11-23
Authors: Kara Schick-Makaroff; Charlotte Berendonk; Jordan Overwater; Laura Streith; Loretta Lee; Manuel Escoto; Daniel Cukor; Scott Klarenbach; Richard Sawatzky Journal: Can J Kidney Health Dis Date: 2022-08-23