Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improv...

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Autores principales:	Monica Green, Joan Cunningham, Kate Anderson, Kalinda Griffiths, Gail Garvey
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2021
Materias:	indigenous aboriginal torres strait islander first nations australia patient experience patient- and person- and family- centred care measurement cancer quality of care health care Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/72ac215918ba4686b8ee6bead75cb354
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spelling	oai:doaj.org-article:72ac215918ba4686b8ee6bead75cb3542021-11-15T04:33:55ZMeasuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices2372-0247https://doaj.org/article/72ac215918ba4686b8ee6bead75cb3542021-08-01T00:00:00Zhttps://pxjournal.org/journal/vol8/iss2/9https://doaj.org/toc/2372-0247This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential solutions reported by participants with cancer were assessed for actionability. All participant groups completed separate interviews regarding IPECCS. Selected implementation measures were assessed based on interviews and IPECCS administration. Participants (n=31) included 11 Aboriginal people with cancer, 7 support people, 4 interviewers, and 9 health staff. Aboriginal people with cancer spoke at length about their cancer care experiences and identified problems and potential solutions that could be acted upon by health services. Although some parts of the IPECCS form were well-completed, recording was inconsistent and inadequate. Aboriginal people with cancer and interviewers predominantly supported the IPECCS process; while most health staff supported the aims, they questioned its feasibility. Capturing domains of patient experience relevant to Aboriginal and Torres Strait Islander people requires a culturally safe, strengths-based approach. The tension between facilitating meaningful patient engagement and maximizing the efficiency of data collection and use must be resolved to realise the benefits of such an approach. <strong>Experience Framework</strong> This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Policy%20%26%20Measurement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PolicyMeasurement">Access other resources</a> related to this lens.</li> </ul>Monica GreenJoan CunninghamKate AndersonKalinda GriffithsGail GarveyThe Beryl Institutearticleindigenousaboriginaltorres strait islanderfirst nationsaustraliapatient experiencepatient- and person- and family- centred caremeasurementcancerquality of carehealth careMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	indigenous aboriginal torres strait islander first nations australia patient experience patient- and person- and family- centred care measurement cancer quality of care health care Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	indigenous aboriginal torres strait islander first nations australia patient experience patient- and person- and family- centred care measurement cancer quality of care health care Medicine (General) R5-920 Public aspects of medicine RA1-1270 Monica Green Joan Cunningham Kate Anderson Kalinda Griffiths Gail Garvey Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
description	This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential solutions reported by participants with cancer were assessed for actionability. All participant groups completed separate interviews regarding IPECCS. Selected implementation measures were assessed based on interviews and IPECCS administration. Participants (n=31) included 11 Aboriginal people with cancer, 7 support people, 4 interviewers, and 9 health staff. Aboriginal people with cancer spoke at length about their cancer care experiences and identified problems and potential solutions that could be acted upon by health services. Although some parts of the IPECCS form were well-completed, recording was inconsistent and inadequate. Aboriginal people with cancer and interviewers predominantly supported the IPECCS process; while most health staff supported the aims, they questioned its feasibility. Capturing domains of patient experience relevant to Aboriginal and Torres Strait Islander people requires a culturally safe, strengths-based approach. The tension between facilitating meaningful patient engagement and maximizing the efficiency of data collection and use must be resolved to realise the benefits of such an approach. <strong>Experience Framework</strong> This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Policy%20%26%20Measurement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PolicyMeasurement">Access other resources</a> related to this lens.</li> </ul>
format	article
author	Monica Green Joan Cunningham Kate Anderson Kalinda Griffiths Gail Garvey
author_facet	Monica Green Joan Cunningham Kate Anderson Kalinda Griffiths Gail Garvey
author_sort	Monica Green
title	Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
title_short	Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
title_full	Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
title_fullStr	Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
title_full_unstemmed	Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices
title_sort	measuring cancer care experiences of aboriginal and torres strait islander people in australia: trial of a new approach that privileges patient voices
publisher	The Beryl Institute
publishDate	2021
url	https://doaj.org/article/72ac215918ba4686b8ee6bead75cb354
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Measuring cancer care experiences of Aboriginal and Torres Strait Islander people in Australia: Trial of a new approach that privileges patient voices

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