Nursing - Research Publications
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ItemAssessing the environment for engagement in health services: The Audit for Consumer Engagement (ACE) tool.(Wiley, 2022-12)INTRODUCTION: Although it is widely accepted that the physical environment can impact health quality and care outcomes, its impact on consumer engagement with health services has not been examined. Currently, no tools exist that assess the opportunities for consumer engagement offered within the physical environment. We aimed to develop and validate an environmental audit tool to assist health services and researchers to assess the extent to which the physical environment in health services creates and supports opportunities for consumer engagement. METHOD: An iterative, team-based approach in partnership with diverse stakeholders was used to develop the Audit for Consumer Engagement (ACE) tool. A four-stage process consisting of desktop review, concept clarification, identification of domains and validation was implemented. The tool was validated in one cancer service via face and content validation and inter-rater reliability was also assessed. RESULTS: The ACE tool was demonstrated to comprise four main domains (access and signage information; resources for consumers; resources to support diversity; and consumer engagement events or activities) measured with 17 items. Face and content validity was achieved, and preliminary reliability analysis indicated substantial agreement between the two researchers for all four domains with an average of 86% agreement. CONCLUSION: The ACE is a novel tool that is practical, relevant and reliable, and developed in partnership with consumers and health service providers. The tool can be used by health service providers, researchers and consumer agency groups to assess opportunities for consumer engagement offered within the physical environment of cancer services. The ACE tool has the potential to be used as a guide for enhancing consumer engagement opportunities and for research purposes. Further evidence about the validity of the tool is required, including criterion-related validity and utility in other health settings. PATIENT/PUBLIC CONTRIBUTION: This project is part of a wider 'CanEngage' project that includes a consumer investigator and is supported by a consumer advisory group. This study was completed in active partnership with members of a consumer advisory group from diverse backgrounds. Feedback was sought from the members throughout the development process of the tool with findings discussed with the CanEngage group members in scheduled meetings.
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ItemCancer-related cognitive impairment in patients with newly diagnosed aggressive lymphoma undergoing standard chemotherapy: a longitudinal feasibility study(SPRINGER, 2022-09)PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, peripheral markers of inflammation, and neuroimaging. An exploration and description of patterns of cancer-related cognitive impairment over the course of treatment and recovery was also undertaken and will be reported separately. METHODS: Eligible participants completed repeated measures of cognition including self-report and neuropsychological assessment, and correlates of cognition including blood cell-based inflammatory markers, and neuroimaging at three pre-specified timepoints, time 1 (T1) - pre-treatment (treatment naïve), time 2 (T2) - mid-treatment, and time 3 (T3) - 6 to 8 weeks post-completion of treatment. RESULTS: 30/33 eligible patients (91%, 95% CI: 76%, 97%) were recruited over 10 months. The recruitment rate was 3 patients/month (95% CI: 2.0, 4.3 patients/month). Reasons for declining included feeling overwhelmed and rapid treatment commencement. Mean age was 57 years (SD = 17 years) and 16/30 (53%) were male. Most patients (20/30, 67%) had diffuse large B cell lymphoma or Hodgkin lymphoma (4/30, 13%). The neuroimaging sub-study was optional, 11/30 participants (37%) were eligible to take part, and all agreed. The remaining 19 participants were ineligible as their diagnostic PET/CT scan was completed prior. Retention and compliance with all assessments were 89 to 100% at all timepoints. Only one participant was withdrawn due to disease progression. CONCLUSIONS: Findings from this study including excellent recruitment, retention, and compliance rates demonstrate it is feasible to longitudinally assess cognition in people with newly diagnosed aggressive lymphoma during their initial treatment and recovery to inform the development of future research to improve patient experiences and cognitive outcomes. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001649101.
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ItemExploration of motivation to participate in a study of cancer-related cognitive impairment among patients with newly diagnosed aggressive lymphoma: a qualitative sub-study(SPRINGER, 2022-02)PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. METHODS: This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. RESULTS: Twenty-seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to "help others". Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a "welcome distraction" and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. CONCLUSION: Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001649101.
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ItemHow do health services engage culturally and linguistically diverse consumers? An analysis of consumer engagement frameworks in Australia.(Wiley, 2021-10)BACKGROUND: Engagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known. OBJECTIVE: This study aimed to investigate how consumer engagement is conceptualised and operationalized and to determine the implications of current consumer engagement frameworks for engagement with CALD consumers. METHOD: Altheide's document analysis approach was used to guide a systematic search, selection and analytic process. Australian Government health department websites were searched for eligible publicly available engagement frameworks. A narrative synthesis was conducted. RESULTS: Eleven engagement frameworks published between 2007 and 2019 were identified and analysed. Only four frameworks discussed engagement with CALD consumers distinctly. Organisational prerequisites to enhance engagement opportunities and approaches to enable activities of engagement were highlighted to improve CALD consumers' active participation in decision making; however, these largely focused on language, with limited exploration of culturally sensitive services. CONCLUSION: There is limited discussion of what culturally sensitive services look like and what resources are needed to enhance CALD consumer engagement in high-level decision making. Health services and policy makers can enhance opportunities for engagement with CALD consumers by being flexible in their approach, implementing policies for reimbursement for participation and evaluating and adapting the activities of engagement in collaboration with CALD consumers. PATIENT/PUBLIC CONTRIBUTION: This study is part of a wider 'CanEngage' project, which includes a consumer investigator, and is supported by a consumer advisory group. The study was conceived with inputs from the consumer advisory group, which continued to meet regularly with the project team to discuss the methodology and emerging findings.
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ItemCodesigning consumer engagement strategies with ethnic minority consumers in Australian cancer services: the CanEngage Project protocol(BMJ PUBLISHING GROUP, 2021)INTRODUCTION: Consumer engagement is central to high-quality cancer service delivery and is a recognised strategy to minimise healthcare-associated harm. Strategies developed to enhance consumer engagement specifically in relation to preventing healthcare harm include questioning health professionals, raising concerns about possible mistakes or risks in care and encouraging patients and caregivers to report suspected errors. Patients from ethnic minority backgrounds are particularly vulnerable to unsafe care, but current engagement strategies have not been developed specifically for (and with) this population. Using an adapted approach to experience-based codesign (EBCD) to support the target population, the aim of the project is to codesign consumer engagement interventions to increase consumer engagement and safety in New South Wales and Victorian cancer inpatient, outpatient and day procedure services. METHODS AND ANALYSIS: A mixed-method project will be undertaken at six study sites. Our EBCD approach includes a preparatory phase in which we will provide training and support to the codesign participants, in addition to recruiting and training consumer cofacilitators for the codesign workshops. The project will follow the EBCD process of gathering and synthesising observational data from each cancer service, with interview data from consumers and staff. With the resulting in-depth understanding of the safety threats commonly experienced by ethnic minority consumers in each site, we will work through feedback events and codesign groups with consumers and staff to determine how they can be more involved with their care to minimise the potential for patient harm. Consumer engagement interventions will be coproduced in each of the six participating services that are tailored to the ethnic minority populations served. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Western Sydney Local Health District Human Research Ethics Committee. The project will provide strategies for ethnic minority consumers to engage with cancer services to minimise healthcare-associated harm that may be applied to diverse healthcare settings.
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ItemLongitudinal exploration of cancer-related cognitive impairment in patients with newly diagnosed aggressive lymphoma: protocol for a feasibility study(BMJ PUBLISHING GROUP, 2020)INTRODUCTION: Cancer-related cognitive impairment (CRCI) is a distressing and disabling side-effect of cancer treatments affecting up to 75% of patients. For some patients, their cognitive impairment may be transient, but for a subgroup, these symptoms can be long-standing and have a major impact on the quality of life. This paper describes the protocol for a study: (1) to assess the feasibility of collecting longitudinal data on cognition via self-report, neuropsychological testing, peripheral markers of inflammation and neuroimaging and (2) to explore and describe patterns of cancer-related cognitive impairment over the course of treatment and recovery in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent. METHODS AND ANALYSIS: This is a prospective, longitudinal, feasibility study in which 30 newly diagnosed, treatment-naive patients with aggressive lymphoma will be recruited over a 12-month period. Patients will complete comprehensive assessments at three time points: baseline (time 1, pre-treatment) and two post-baseline follow-up assessments (time 2, mid-treatment and time 3, 6-8 weeks post-treatment completion). All patients will be assessed for self-reported cognitive difficulties and objective cognitive function using Stroop Colour and Word, Trail Making Test Part A and B, Hopkins Verbal Learning Test-Revised, Controlled Oral Word Association and Digit Span. Blood cell-based inflammatory markers and neuroimaging including a positron emission tomography (PET) with 18F-labelled fluoro-2-deoxyglucose (18F-FDG) and CT (18F-FDG-PET/CT) and a MRI will explore potential inflammatory and neuroanatomical or functional mechanisms and biomarkers related to CRCI. The primary intent of analysis will be to assess the feasibility of collecting longitudinal data on cognition using subjective reports and objective tasks from patients during treatment and recovery for lymphoma. These data will inform the design of a larger-scale investigation into the patterns of cognitive change over the course of treatment and recovery, adding to an underexplored area of cancer survivorship research. ETHICS AND DISSEMINATION: Ethical approval has been granted by Austin Health Human Rights Ethics Committee (HREC) in Victoria Australia. Peer reviewed publications and conference presentations will report the findings of this novel study. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12619001649101).