Identifying and integrating patient and caregiver perspectives for clinical practice guidelines on the screening and management of infectious microorganisms in hemodialysis units

Hilary M Miller; Allison Tong; David J Tunnicliffe; Denise Campbell; Jule Pinter; Robert J Commons; Eugene Athan; Jonathan C Craig; Nicole Gilroy; Julianne Green; Belinda Henderson; Martin Howell; Rhonda L Stuart; Carolyn van Eps; Muh Geot Wong; Janak de Zoysa; Meg J Jardine

doi:10.1111/hdi.12457

Identifying and integrating patient and caregiver perspectives for clinical practice guidelines on the screening and management of infectious microorganisms in hemodialysis units

Hemodial Int. 2017 Apr;21(2):213-223. doi: 10.1111/hdi.12457. Epub 2016 Jul 8.

Authors

Hilary M Miller^{1

2}, Allison Tong^{1

2}, David J Tunnicliffe^{1

2}, Denise Campbell^{1

2}, Jule Pinter^{1

2}, Robert J Commons³, Eugene Athan⁴, Jonathan C Craig^{1

2}, Nicole Gilroy⁵, Julianne Green⁶, Belinda Henderson⁷, Martin Howell^{1

2}, Rhonda L Stuart^{8

9}, Carolyn van Eps¹⁰, Muh Geot Wong¹¹, Janak de Zoysa^{12

13}, Meg J Jardine^{11

14}

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
³ Menzies School of Health Research and Charles Darwin University, Casuarina, NT, Australia.
⁴ Department of Infectious Disease, Barwon Health, Deakin University, Geelong, VIC, Australia.
⁵ Department of Infectious Disease, Westmead Hospital, Sydney, NSW, Australia.
⁶ Sydney Adventist Hospital, Wahroonga, NSW, Australia.
⁷ Department of Infectious Disease, Princess Alexandra Hospital, Brisbane, QLD, Australia.
⁸ Monash Infectious Diseases, Monash Health, VIC, Australia.
⁹ Department of Medicine, Monash University, VIC, Australia.
¹⁰ Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.
¹¹ Renal and Metabolic Division, The George Institute for Global Health, The University of Sydney, Sydney, NSW, Australia.
¹² Renal Services, North Shore Hospital, Auckland, New Zealand.
¹³ Faculty of Medicine and Health Sciences, The University of Auckland, Auckland, New Zealand.
¹⁴ Nephrology Unit, Concord Repatriation General Hospital, Sydney, NSW, Australia.

PMID: 27389043
DOI: 10.1111/hdi.12457

Abstract

Introduction: 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.

Methods: 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.

Findings: 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.

Discussion: 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.

Keywords: Practice guideline; consumer participation; cross-infection; patient satisfaction; renal dialysis.

MeSH terms

Adult
Aged
Aged, 80 and over
Caregivers / psychology*
Communicable Diseases / microbiology*
Communicable Diseases / pathology
Female
Guidelines as Topic
Hospital Units
Humans
Middle Aged
Renal Dialysis / adverse effects*