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Article ; Online: Positioning Stakeholder Perspectives in COPD End-of-Life Care Using Critical Theory and Actor-Network Theory

Amanda Landers / Suzanne G. Pitama / Suetonia C. Palmer / Lutz Beckert

International Journal of Qualitative Methods, Vol

A Methodological Approach

2023 Volume 22

Abstract: Background Meaningful engagement with stakeholders in the provision of healthcare and services is recommended by the World Health Organisation. Culturally specific evaluation may enable deeper exploration of the critical views of people living with ... ...

Abstract	Background Meaningful engagement with stakeholders in the provision of healthcare and services is recommended by the World Health Organisation. Culturally specific evaluation may enable deeper exploration of the critical views of people living with advanced long-term conditions, their support people, and healthcare providers. Aim and design This article describes how critical theory and Actor-Network theory involved all stakeholders including patients with severe chronic obstructive pulmonary disease as expert voices during the evaluation of end-of-life care services. Results We describe how critical theory and Actor-Network theory informed the methodologies for focus groups and how stakeholders spoke as critical experts about and in the system. An analytical sample of the focus group study is presented to demonstrate how the frameworks were applied to identify cohesive themes that were inclusive of all stakeholders. Conclusions This paper highlights how the evaluation of health systems can include a critical methodological approach to include the values and perspectives of all stakeholders. The outcomes may be used by those who design health systems to develop high-quality services.
Keywords	Social sciences (General) ; H1-99
Subject code	360
Language	English
Publishing date	2023-11-01T00:00:00Z
Publisher	SAGE Publishing
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Reported sources of health inequities in Indigenous Peoples with chronic kidney disease

Tania Huria / Suzanne G. Pitama / Lutz Beckert / Jaquelyne Hughes / Nathan Monk / Cameron Lacey / Suetonia C. Palmer

BMC Public Health, Vol 21, Iss 1, Pp 1-

a systematic review of quantitative studies

2021 Volume 10

Abstract: Abstract Background To summarise the evidentiary basis related to causes of inequities in chronic kidney disease among Indigenous Peoples. Methods We conducted a Kaupapa Māori meta-synthesis evaluating the epidemiology of chronic kidney diseases in ... ...

Abstract	Abstract Background To summarise the evidentiary basis related to causes of inequities in chronic kidney disease among Indigenous Peoples. Methods We conducted a Kaupapa Māori meta-synthesis evaluating the epidemiology of chronic kidney diseases in Indigenous Peoples. Systematic searching of MEDLINE, Google Scholar, OVID Nursing, CENTRAL and Embase was conducted to 31 December 2019. Eligible studies were quantitative analyses (case series, case-control, cross-sectional or cohort study) including the following Indigenous Peoples: Māori, Aboriginal and Torres Strait Islander, Métis, First Nations Peoples of Canada, First Nations Peoples of the United States of America, Native Hawaiian and Indigenous Peoples of Taiwan. In the first cycle of coding, a descriptive synthesis of the study research aims, methods and outcomes was used to categorise findings inductively based on similarity in meaning using the David R Williams framework headings and subheadings. In the second cycle of analysis, the numbers of studies contributing to each category were summarised by frequency analysis. Completeness of reporting related to health research involving Indigenous Peoples was evaluated using the CONSIDER checklist. Results Four thousand three hundred seventy-two unique study reports were screened and 180 studies proved eligible. The key finding was that epidemiological investigators most frequently reported biological processes of chronic kidney disease, particularly type 2 diabetes and cardiovascular disease as the principal causes of inequities in the burden of chronic kidney disease for colonised Indigenous Peoples. Social and basic causes of unequal health including the influences of economic, political and legal structures on chronic kidney disease burden were infrequently reported or absent in existing literature. Conclusions In this systematic review with meta-synthesis, a Kaupapa Māori methodology and the David R Williams framework was used to evaluate reported causes of health differences in chronic kidney disease in ...
Keywords	Public aspects of medicine ; RA1-1270
Subject code	390
Language	English
Publishing date	2021-07-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Understanding the experiences, perspectives and values of indigenous women around smoking cessation in pregnancy

Rachael C. Walker / Aria Graham / Suetonia C. Palmer / Anita Jagroop / David C. Tipene-Leach

International Journal for Equity in Health, Vol 18, Iss 1, Pp 1-

systematic review and thematic synthesis of qualitative studies

2019 Volume 10

Abstract: Abstract Background The prevalence of smoking during pregnancy among indigenous women approaches 50% and is associated with sudden infant death, pregnancy loss, preterm delivery, low birth weight, and anatomical deformity. This study aims to synthesise ... ...

Abstract	Abstract Background The prevalence of smoking during pregnancy among indigenous women approaches 50% and is associated with sudden infant death, pregnancy loss, preterm delivery, low birth weight, and anatomical deformity. This study aims to synthesise qualitative studies by reporting experiences, perceptions, and values of smoking cessation among pregnant indigenous women to inform potential interventions. Method A highly-sensitive search of MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies was conducted in March 2018. We utilised two methods (thematic synthesis and an indigenous Māori analytical framework) in parallel to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. Results We included seven studies from Australia and New Zealand involving 250 indigenous women. Three themes were identified. Realising well-being and creating agency included giving the best start to baby, pride in being a healthy mum, female role models, and family support. Understanding the drivers for smoking included the impact of stress and chaos that hindered prioritisation of self-care, the social acceptability of smoking, guilt and feeling judged, and inadequate information about the risks of smoking. Indigenous women strongly preferred culturally responsive approaches to smoking cessation, placing value on programs designed specifically for and by indigenous people, that were accessible, and provided an alternative to smoking. Conclusion Future interventions and smoking cessation programmes might be more effective and acceptable to indigenous women and families when they harness self-agency and the desire for a healthy baby, recognise the high value of indigenous peer involvement, and embed a social focus in place of smoking as a way to maintain community support and relationships. Development and evaluation of smoking cessation programs for pregnant indigenous women and families is warranted.
Keywords	Indigenous ; Smoking ; Pregnancy ; Smoking cessation ; Qualitative ; Systematic review ; Public aspects of medicine ; RA1-1270
Subject code	390
Language	English
Publishing date	2019-05-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Reported Māori consumer experiences of health systems and programs in qualitative research

Suetonia C. Palmer / Harriet Gray / Tania Huria / Cameron Lacey / Lutz Beckert / Suzanne G. Pitama

International Journal for Equity in Health, Vol 18, Iss 1, Pp 1-

a systematic review with meta-synthesis

2019 Volume 12

Abstract: Abstract Background Persistent inequities in health experiences and outcomes are observed for Māori compared to non-Māori in Aotearoa New Zealand. We conceptualised factors associated with Māori consumer experiences of health programs and services and ... ...

Abstract	Abstract Background Persistent inequities in health experiences and outcomes are observed for Māori compared to non-Māori in Aotearoa New Zealand. We conceptualised factors associated with Māori consumer experiences of health programs and services and characterise how the recommendations arising from qualitative research inform strategies to address inequities. Methods In this systematic review, electronic literature searching was conducted in February 2018. Qualitative studies reporting Māori consumer experiences of health services and programs in Aotearoa New Zealand were eligible. Māori consumer experiences of health services were mapped to the WHO Commission of Social Determinants of Health (CSDH) conceptual framework on health inequities as related to: (i) the socioeconomic and political context; (ii) socioeconomic positioning; or (iii) intermediary factors that increase exposure to health-compromising conditions. Recommendations to improve consumer experiences were mapped to the CSDH framework for tackling social determinants of health inequities as policy directions on: (i) unequal consequences of illness (individual interaction); (ii) risks of exposure to health-damaging factors (community); (iii) exposures to health-damaging factors (public policies); and (iv) mitigating effects of socioeconomic and political stratification (environment). Results Fifty-four studies were included. Māori consumer experiences mapped to social determinants of health inequities were most frequently related to direct interactions with health services and programs, particularly patient-clinician interactions (communication, relationships) and cultural competencies of clinicians and the system. Key recommendations by researchers mapped to potential strategies to address inequity were identified at all levels of the political, social and health system from individual interactions, community change, and broader public and system-level strategies. Recommendations were predominantly focused on actions to reduce risks of exposure to ...
Keywords	Indigenous ; Health services ; Quality ; Synthesis ; Systematic review ; Public aspects of medicine ; RA1-1270
Language	English
Publishing date	2019-10-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Consolidated criteria for strengthening reporting of health research involving indigenous peoples

Tania Huria / Suetonia C. Palmer / Suzanne Pitama / Lutz Beckert / Cameron Lacey / Shaun Ewen / Linda Tuhiwai Smith

BMC Medical Research Methodology, Vol 19, Iss 1, Pp 1-

the CONSIDER statement

2019 Volume 9

Abstract: Abstract Background Research reporting guidelines are increasingly commonplace and shown to improve the quality of published health research and health outcomes. Despite severe health inequities among Indigenous Peoples and the potential for research to ... ...

Abstract	Abstract Background Research reporting guidelines are increasingly commonplace and shown to improve the quality of published health research and health outcomes. Despite severe health inequities among Indigenous Peoples and the potential for research to address the causes, there is an extended legacy of health research exploiting Indigenous Peoples. This paper describes the development of the CONSolIDated critERtia for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement. Methods A collaborative prioritization process was conducted based on national and international statements and guidelines about Indigenous health research from the following nations (Peoples): Australia (Aboriginal and Torres Strait Islanders), Canada (First Nations Peoples, Métis), Hawaii (Native Hawaiian), New Zealand (Māori), Taiwan (Taiwan Indigenous Tribes), United States of America (First Nations Peoples) and Northern Scandinavian countries (Sami). A review of seven research guidelines was completed, and meta-synthesis was used to construct a reporting guideline checklist for transparent and comprehensive reporting of research involving Indigenous Peoples. Results A list of 88 possible checklist items was generated, reconciled, and categorized. Eight research domains and 17 criteria for the reporting of research involving Indigenous Peoples were identified. The research reporting domains were: (i) governance; (ii) relationships; (iii) prioritization; (iv) methodologies; (v) participation; (vi) capacity; (vii) analysis and findings; and (viii) dissemination. Conclusions The CONSIDER statement is a collaborative synthesis and prioritization of national and international research statements and guidelines. The CONSIDER statement provides a checklist for the reporting of health research involving Indigenous peoples to strengthen research praxis and advance Indigenous health outcomes.
Keywords	Indigenous peoples ; Research reporting ; Best practice ; Equity ; Medicine (General) ; R5-920
Subject code	390
Language	English
Publishing date	2019-08-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: The Symptom Monitoring with Feedback Trial (SWIFT)

Lavern Greenham / Paul N. Bennett / Kathryn Dansie / Andrea K. Viecelli / Shilpanjali Jesudason / Rebecca Mister / Brendan Smyth / Portia Westall / Samuel Herzog / Chris Brown / William Handke / Suetonia C. Palmer / Fergus J. Caskey / Cecile Couchoud / John Simes / Stephen P. McDonald / Rachael L. Morton

Trials, Vol 23, Iss 1, Pp 1-

protocol for a registry-based cluster randomised controlled trial in haemodialysis

2022 Volume 13

Abstract: Abstract Background Kidney failure prevalence is increasing worldwide. Haemodialysis, peritoneal dialysis or kidney transplantation are undertaken to extend life with kidney failure. People receiving haemodialysis commonly experience fatigue, pain, ... ...

Abstract	Abstract Background Kidney failure prevalence is increasing worldwide. Haemodialysis, peritoneal dialysis or kidney transplantation are undertaken to extend life with kidney failure. People receiving haemodialysis commonly experience fatigue, pain, nausea, cramping, itching, sleeping difficulties, anxiety and depression. This symptom burden contributes to poor health-related quality of life (QOL) and is a major reason for treatment withdrawal and death. The Symptom monitoring WIth Feedback Trial (SWIFT) will test the hypothesis that regular symptom monitoring with feedback to people receiving haemodialysis and their treating clinical team can improve QOL. Methods We are conducting an Australia and New Zealand Dialysis and Transplant (ANZDATA) registry-based cluster randomised controlled trial to determine the clinical- and cost-effectiveness at 12 months, of 3-monthly symptom monitoring using the Integrated Palliative Outcome Scale-Renal (IPOS-Renal) survey with clinician feedback, compared with usual care among adults treated with haemodialysis. Participants complete symptom scoring using a tablet, which are provided to participants and to clinicians. The trial aims to recruit 143 satellite haemodialysis centres, (up to 2400 participants). The primary outcome is change in health-related QOL, as measured by EuroQol 5-Dimension, 5-Level (EQ-5D-5L) instrument. Secondary outcomes include overall survival, symptom severity (including haemodialysis-associated fatigue), healthcare utilisation and cost-effectiveness. Discussion SWIFT is the first registry-based trial in the Australian haemodialysis population to investigate whether regular symptom monitoring with feedback to participants and clinicians improves QOL. SWIFT is embedded in the ANZDATA Registry facilitating pragmatic recruitment from public and private dialysis clinics, throughout Australia. SWIFT will inform future collection, storage and reporting of patient-reported outcome measures (PROMs) within a clinical quality registry. As the first trial to ...
Keywords	Kidney replacement therapy ; Renal dialysis ; Haemodialysis ; Patient-reported outcomes ; Chronic kidney disease ; Quality of life ; Medicine (General) ; R5-920
Subject code	360
Language	English
Publishing date	2022-05-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Values, preferences and burden of treatment for the initiation of GLP-1 receptor agonists and SGLT-2 inhibitors in adult patients with type 2 diabetes

Per Olav Vandvik / Qiukui Hao / Sheyu Li / Jose Gerardo González-González / Rene Rodriguez-Gutierrez / Suetonia C Palmer / Ricardo Cesar Solis / Alejandro Díaz González-Colmenero / Juan Manuel Millán-Alanís / Neri Alejandro Alvarez-Villalobos

BMJ Open, Vol 11, Iss

a systematic review

2021 Volume 7

Abstract: Objectives Assess values, preferences and burden of treatment that patients with type 2 diabetes consider when initiating glucagon-like peptide-1 receptor agonists (GLP-1 RA) or sodium-glucose cotransporter-2 inhibitors (SGLT-2i) compared with other ... ...

Abstract	Objectives Assess values, preferences and burden of treatment that patients with type 2 diabetes consider when initiating glucagon-like peptide-1 receptor agonists (GLP-1 RA) or sodium-glucose cotransporter-2 inhibitors (SGLT-2i) compared with other glucose-lowering options.Methods Paired reviewers independently included studies reporting quantitative or qualitative methods to assess values, preferences and burden of treatment reported by patients with type 2 diabetes regarding the initiation of GLP-1 RA or SGLT-2i over other alternatives. A systematic search in MEDLINE, Scopus, EMBASE, Web of Science and Cochrane Central Register of Controlled Trials from inception until May 2020 was performed by an experienced librarian. Risk of bias was assessed with a specifically designed tool for values and preferences studies.Results 17 studies (7296 patients) proved eligible. Studies fulfilling criteria for SGLT-2i were not identified. Five studies (2662 patients) evaluated preferences for GLP-1 RA compared with other glucose-lowering medications. 12 studies (4634 patients) evaluated preferences between, at least, two kinds of GLP-1 RA or their injection devices based on the following attributes: efficacy, dose, application frequency, device characteristics. Among studies comparing GLP-1 RA to other glucose-lowering medications, some preferences were observed for dypeptil peptidase-4 inhibitors compared with once daily liraglutide. Comparing different attributes of GLP-1 RA drugs and devices, cardiovascular risk reduction, glucose lowering potential, once weekly and simple administered regimens were the most preferred.Conclusions As no evidence for preferences on SGLT-2i was available, only preferences for GLP-1 RA were assessed; however, evidence is still limited for the latter. Studies comparing preferences for GLP1-RA to other glucose-lowering alternatives only included twice daily or once daily injection regimens of GLP-1 RA drugs. According to our findings, once weekly alternatives are widely preferred than the ...
Keywords	Medicine ; R
Subject code	610
Language	English
Publishing date	2021-07-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Identifying Candidate Protein Markers of Acute Kidney Injury in Acute Decompensated Heart Failure

Evelyn M. Templeton / Moritz Lassé / Torsten Kleffmann / Leigh J. Ellmers / Suetonia C. Palmer / Trent Davidson / Nicola J. A. Scott / John W. Pickering / Christopher J. Charles / Zoltan H. Endre / Vicky A. Cameron / A. Mark Richards / Miriam T. Rademaker / Anna P. Pilbrow

International Journal of Molecular Sciences, Vol 23, Iss 1009, p

2022 Volume 1009

Abstract: One-quarter of patients with acute decompensated heart failure (ADHF) experience acute kidney injury (AKI)—an abrupt reduction or loss of kidney function associated with increased long-term mortality. There is a critical need to identify early and real- ... ...

Abstract	One-quarter of patients with acute decompensated heart failure (ADHF) experience acute kidney injury (AKI)—an abrupt reduction or loss of kidney function associated with increased long-term mortality. There is a critical need to identify early and real-time markers of AKI in ADHF; however, to date, no protein biomarkers have exhibited sufficient diagnostic or prognostic performance for widespread clinical uptake. We aimed to identify novel protein biomarkers of AKI associated with ADHF by quantifying changes in protein abundance in the kidneys that occur during ADHF development and recovery in an ovine model. Relative quantitative protein profiling was performed using sequential window acquisition of all theoretical fragment ion spectra–mass spectrometry (SWATH–MS) in kidney cortices from control sheep ( n = 5), sheep with established rapid-pacing-induced ADHF ( n = 8), and sheep after ~4 weeks recovery from ADHF ( n = 7). Of the 790 proteins quantified, we identified 17 candidate kidney injury markers in ADHF, 1 potential kidney marker of ADHF recovery, and 2 potential markers of long-term renal impairment (differential abundance between groups of 1.2–2.6-fold, adjusted p < 0.05). Among these 20 candidate protein markers of kidney injury were 6 candidates supported by existing evidence and 14 novel candidates not previously implicated in AKI. Proteins of differential abundance were enriched in pro-inflammatory signalling pathways: glycoprotein VI (activated during ADHF development; adjusted p < 0.01) and acute phase response (repressed during recovery from ADHF; adjusted p < 0.01). New biomarkers for the early detection of AKI in ADHF may help us to evaluate effective treatment strategies to prevent mortality and improve outcomes for patients.
Keywords	acute kidney injury ; acute decompensated heart failure ; biomarker ; proteomics ; heart failure ; SWATH–MS ; Biology (General) ; QH301-705.5 ; Chemistry ; QD1-999
Subject code	616 ; 610
Language	English
Publishing date	2022-01-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Experiences, perspectives and values of Indigenous peoples regarding kidney transplantation

Rachael C. Walker / Sally Abel / Annie Reynolds / Suetonia C. Palmer / Curtis Walker / David C. Tipene-Leach

International Journal for Equity in Health, Vol 18, Iss 1, Pp 1-

systematic review and thematic synthesis of qualitative studies

2019 Volume 12

Abstract: Abstract Background Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non- ... ...

Abstract	Abstract Background Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. We describe Indigenous peoples’ experiences and perspectives including traditional values around kidney transplantation to inform international transplant programs. Methods We conducted a systematic review of qualitative studies involving Indigenous adults who have experience with or perceptions of kidney transplantation. We searched MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies till July 2019. We utilised thematic synthesis to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. Results Eight studies involving 225 Indigenous participants were included. Five themes were identified: strong desire for transplantation (seeking normality and freedom from dialysis, wanting to reduce burden of disease within community); lack of partnership in shared decision-making (receiving inadequate information, ineffective communication); barriers to live kidney donation (difficulty asking, apprehension about impact on donor, avoiding additional financial burden and fear of complications); cultural considerations (influence of traditional values and beliefs, reconciling traditional values with pragmatic need); and experiencing lack of cultural competence in clinical care (struggling with prejudice and ignorance, mistrust of clinicians and health system). Conclusion Indigenous participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants for others in their communities with ESKD. However, they faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not ...
Keywords	Indigenous ; Kidney transplant ; Qualitative ; Systematic review ; Public aspects of medicine ; RA1-1270
Subject code	390
Language	English
Publishing date	2019-12-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Association of incident dialysis modality with mortality

Mark R. Marshall / Chun-Yuan Hsiao / Philip K. Li / Masaaki Nakayama / S. Rabindranath / Rachael C. Walker / Xueqing Yu / Suetonia C. Palmer

Systematic Reviews, Vol 8, Iss 1, Pp 1-

a protocol for systematic review and meta-analysis of randomized controlled trials and cohort studies

2019 Volume 6

Abstract: Abstract Background At least 2.6 million adults and children receive dialysis treatment for end-stage kidney disease (ESKD) worldwide. The large majority of these receive hemodialysis (HD), while the remaining receive peritoneal dialysis (PD). Peritoneal ...

Abstract	Abstract Background At least 2.6 million adults and children receive dialysis treatment for end-stage kidney disease (ESKD) worldwide. The large majority of these receive hemodialysis (HD), while the remaining receive peritoneal dialysis (PD). Peritoneal dialysis may be associated with similar mortality outcomes as HD, and patient-reported outcomes are potentially increased with PD. Existing evidence for the mortality associated with PD was summarized over 20 years ago, and there has been greater marginal improvement in survival with PD relative to HD since that time. It is therefore timely to reexamine the question of differential mortality by modality and summarize evidence from more contemporary practice settings. Methods/design Electronic databases will be systematically searched for publications that report the association between dialysis modality (HD or PD) with death from any cause and cause-specific death in incident patients with end-stage kidney disease. The database searches will be supplemented by searching through citations and references and consultation with experts. Studies published before 1995 will be excluded. Screening of both titles and abstracts will be done by two independent reviewers. All disagreements will be resolved by an independent third reviewer. A quantitative meta-analysis of effect sizes and standard errors will be applied. Discussion Our systematic review will update previous evidence summaries and provide a quantitative and standardized assessment of the contemporary literature comparing HD and PD including published and unpublished non-English studies from greater China, Taiwan, and Japan. This review will inform shared decision-making around initial dialysis modality choice and jurisdiction-level considerations of dialysis practice. Systematic review registration PROSPERO CRD42018111829
Keywords	Hemodialysis ; Systematic review ; Peritoneal dialysis ; Mortality ; Cause-specific mortality ; Medicine ; R
Language	English
Publishing date	2019-02-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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