title: Identifying and integrating patient and caregiver perspectives for clinical practice guidelines on the screening and management of infectious microorganisms in hemodialysis units.
abstract: The integration of patient and caregiver input into guideline development can help to ensure that clinical care addresses patient expectations, priorities, and needs. We aimed to identify topics and outcomes salient to patients and caregivers for inclusion in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guideline on the screening and management of infectious microorganisms in hemodialysis units.
  
  
  
  A facilitated workshop was conducted with 11 participants (patients [n = 8], caregivers [n = 3]). Participants identified and discussed potential topics for inclusion in the guidelines, which were compared to those developed by the guideline working group. The workshop transcript was thematically analyzed to identify and describe the reasons underpinning their priorities.
  
  
  
  Patients and caregivers identified a range of topics already covered by the scope of the proposed guidelines and also suggested additional topics: privacy and confidentiality, psychosocial care during/after disease notification, quality of transportation, psychosocial treatment of patients in isolation, patient/caregiver education and engagement, and patient advocacy. Five themes characterized discussion and underpinned their choices: shock and vulnerability, burden of isolation, fear of infection, respect for privacy and confidentiality, and confusion over procedural inconsistencies.
  
  
  
  Patients and caregivers emphasized the need for guidelines to address patient education and engagement, and the psychosocial implications of communication and provision of care in the context of infectious microorganisms in hemodialysis units. Integrating patient and caregiver perspectives can help to improve the relevance of guidelines to enhance quality of care, patient experiences, and health and psychosocial outcomes.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Hilary M
authors.identifier: 0000-0002-2452-2087
authors.initials: HM
authors.lastname: Miller
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: David J
authors.initials: DJ
authors.lastname: Tunnicliffe
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Denise
authors.initials: D
authors.lastname: Campbell
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Jule
authors.initials: J
authors.lastname: Pinter
authors.affiliation: Menzies School of Health Research and Charles Darwin University, Casuarina, NT, Australia.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Commons
authors.affiliation: Department of Infectious Disease, Barwon Health, Deakin University, Geelong, VIC, Australia.
authors.forename: Eugene
authors.initials: E
authors.lastname: Athan
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: Department of Infectious Disease, Westmead Hospital, Sydney, NSW, Australia.
authors.forename: Nicole
authors.initials: N
authors.lastname: Gilroy
authors.affiliation: Sydney Adventist Hospital, Wahroonga, NSW, Australia.
authors.forename: Julianne
authors.initials: J
authors.lastname: Green
authors.affiliation: Department of Infectious Disease, Princess Alexandra Hospital, Brisbane, QLD, Australia.
authors.forename: Belinda
authors.initials: B
authors.lastname: Henderson
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Howell
authors.affiliation: Monash Infectious Diseases, Monash Health, VIC, Australia.|Department of Medicine, Monash University, VIC, Australia.
authors.forename: Rhonda L
authors.initials: RL
authors.lastname: Stuart
authors.affiliation: Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.
authors.forename: Carolyn
authors.initials: C
authors.lastname: van Eps
authors.affiliation: Renal and Metabolic Division, The George Institute for Global Health, The University of Sydney, Sydney, NSW, Australia.
authors.forename: Muh Geot
authors.initials: MG
authors.lastname: Wong
authors.affiliation: Renal Services, North Shore Hospital, Auckland, New Zealand.|Faculty of Medicine and Health Sciences, The University of Auckland, Auckland, New Zealand.
authors.forename: Janak
authors.initials: J
authors.lastname: de Zoysa
authors.affiliation: Renal and Metabolic Division, The George Institute for Global Health, The University of Sydney, Sydney, NSW, Australia.|Nephrology Unit, Concord Repatriation General Hospital, Sydney, NSW, Australia.
authors.forename: Meg J
authors.initials: MJ
authors.lastname: Jardine
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003141:Communicable Diseases / Q000382:microbiology* / Q000473:pathology; D005260:Female; D017408:Guidelines as Topic; D006757:Hospital Units; D006801:Humans; D008875:Middle Aged; D006435:Renal Dialysis / Q000009:adverse effects*
keywords: Practice guideline; consumer participation; cross-infection; patient satisfaction; renal dialysis