03187nas a2200445   4500000000100000008004100001653001000042653001100052653001100063653000900074653001600083653002200099653001900121653002600140653001500166653002400181653001900205100001300224700001400237700001900251700001700270700001600287700001800303700002200321700002000343700001900363700001700382700001800399700001900417700002200436700001800458700001800476700002000494700001900514245018400533300001200717490000700729520199100736022001402727       2017                            d10aAdult10aFemale10aHumans10aAged10aMiddle Aged10aAged, 80 and over10aRenal Dialysis10aCommunicable Diseases10aCaregivers10aGuidelines as Topic10aHospital Units1 aWong Muh1 aJardine M1 aCraig Jonathan1 aTong Allison1 aPinter Jule1 aMiller Hilary1 aTunnicliffe David1 aCampbell Denise1 aCommons Robert1 aAthan Eugene1 aGilroy Nicole1 aGreen Julianne1 aHenderson Belinda1 aHowell Martin1 aStuart Rhonda1 avan Eps Carolyn1 ade Zoysa Janak00aIdentifying and integrating patient and caregiver perspectives for clinical practice guidelines on the screening and management of infectious microorganisms in hemodialysis units.  a213-2230 v213 a<p>
<b>INTRODUCTION: </b>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.
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<b>METHODS: </b>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.
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<b>FINDINGS: </b>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.
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<b>DISCUSSION: </b>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.
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