Nursing - Research Publications

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    Including migrant oncology patients in research: A multisite pilot randomised controlled trial testing consultation audio-recordings and question prompt lists
    Hyatt, A ; Lipson-Smith, R ; Gough, K ; Butow, P ; Jefford, M ; Hack, TF ; Hale, S ; Zucchi, E ; White, S ; Ozolins, U ; Schofield, P (ELSEVIER INC, 2022-08)
    BACKGROUND: Oncology patients who are migrants or refugees face worse outcomes due to language and communication barriers impacting care. Interventions such as consultation audio-recordings and question prompt lists may prove beneficial in mediating communication challenges. However, designing robust research inclusive of patients who do not speak English is challenging. This study therefore aimed to: a) pilot test and assess the appropriateness of the proposed research design and methods for engaging migrant populations, and b) determine whether a multi-site RCT efficacy assessment of the communication intervention utilising these methods is feasible. METHODS: This study is a mixed-methods parallel-group, randomised controlled feasibility pilot trial. Feasibility outcomes comprised assessment of: i) screening and recruitment processes, ii) design and procedures, and iii) research time and costing. The communication intervention comprised audio-recordings of a key medical consultation with an interpreter, and question prompt lists and cancer information translated into Arabic, Greek, Traditional, and Simplified Chinese. RESULTS: Assessment of feasibility parameters revealed that despite barriers, methods utilised in this study supported the inclusion of migrant oncology patients in research. A future multi-site RCT efficacy assessment of the INFORM communication intervention using these methods is feasible if recommendations to strengthen screening and recruitment are adopted. Importantly, hiring of bilingual research assistants, and engagement with community and consumer advocates is essential. Early involvement of clinical and interpreting staff as key stakeholders is likewise recommended. CONCLUSION: Results from this feasibility RCT help us better understand and overcome the challenges and misconceptions about including migrant patients in clinical research.
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    Culturally and linguistically diverse oncology patients' perspectives of consultation audio-recordings and question prompt lists
    Hyatt, A ; Lipson-Smith, R ; Gough, K ; Butow, P ; Jefford, M ; Hack, TF ; Hale, S ; Zucchi, E ; White, S ; Ozolins, U ; Schofield, P (WILEY, 2018-09)
    OBJECTIVE: Ethnicity and migrant status result in disparities with cancer burden and survival, with communication difficulties cited as the main barrier to access. Our research team tested a communication intervention package comprising consultation audio-recordings (ARs) and question prompt lists (QPLs) for low English-speaking (LES) patients with cancer. This study explored LES patient experiences, preferences, and recommendations regarding the communication package. METHODS: Participants completed a questionnaire and qualitative interview regarding ARs and QPLs. Eligibility criteria comprised aged ≥18 years old; a consultation with an oncologist between June 1, 2015 and April 1, 2016; an Arabic, Cantonese, Greek, or Mandarin professional interpreter booked for that consultation; and randomised to receive the communication intervention. RESULTS: Eighteen patients completed the qualitative interview and 17 completed the questionnaire. Fifteen reported listening to the AR at least once. Participants reported that QPLs and ARs provide support and assistance with remembering and understanding medical information. Both resources were seen as having applicability beyond the oncology setting in regards to improving health service delivery and continuity of care. However, patients felt that individual tailoring of the resources should be considered. Patients also found it useful to share ARs with family. CONCLUSIONS: The LES participants in this study considered the ARs and QPLs useful for most, but not all contexts. Recommendations regarding delivery and use highlight that these resources should be tailored and patient-driven. Further, patients foresaw a range of additional uses for consultation ARs within the broader healthcare context.
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    Suboptimal health literacy in patients with lung cancer or head and neck cancer
    Koay, K ; Schofield, P ; Gough, K ; Buchbinder, R ; Rischin, D ; Ball, D ; Corry, J ; Osborne, RH ; Jefford, M (SPRINGER, 2013-08)
    BACKGROUND: Health literacy is the capacity to seek, understand and utilise health information to make informed health decisions. Suboptimal health literacy has been linked to poor health outcomes. This study assessed health literacy in patients treated for head and neck or lung cancer and associations between health literacy and demographic factors and distress levels. METHODS: Consecutive English-speaking patients were approached at Peter MacCallum Cancer Centre. Face-to-face interviews were conducted. Health literacy was assessed using the Shortened Test of Functional Health Literacy in Adults (S-TOFHLA) and Health Literacy Management Scale (HeLMS). Distress was assessed by the Distress Thermometer. RESULTS: Response rate was 73 % (n = 93). Using S-TOFHLA, prevalence of inadequate and marginal health literacy was 5.4 and 6.5 % respectively, and both groups were associated with older age (p = 0.043) and low education level (p = 0.009). Specific assessment of S-TOFHLA revealed that 70 % could not interpret prescription labels. HeLMS reported that 17 % had health literacy difficulties. Low scores on domains of HeLMS were associated with lower education level (p < 0.05) but younger age (p < 0.05). Distress was not associated with S-TOFHLA scores but related to low scores in two domains of HeLMS (p < 0.05). CONCLUSION: Using two different measures, a substantial proportion of patients have poor health literacy abilities and may experience difficulties in accessing health services.
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    Evaluating a nurse-led survivorship care package (SurvivorCare) for bowel cancer survivors: study protocol for a randomized controlled trial
    Jefford, M ; Aranda, S ; Gough, K ; Lotfi-Jam, K ; Butow, P ; Krishnasamy, M ; Young, J ; Phipps-Nelson, J ; Russell, L ; King, D ; Schofield, P (BMC, 2013-08-19)
    BACKGROUND: Colorectal cancer (CRC) is the most common cancer affecting both men and women in Australia. The illness and related treatments can cause distressing adverse effects, impact on emotional and psychological well-being, and adversely affect social, occupational and relationship functioning for many years after the end of treatment or, in fact, lifelong. Current models of follow-up fail to address the complex needs arising after treatment completion. Strategies to better prepare and support survivors are urgently required. We previously developed a nurse-led supportive care program (SurvivorCare) and tested it in a pilot study involving 10 CRC survivors. The intervention was found to be highly acceptable, appropriate, relevant and useful. METHODS/DESIGN: This study is a multisite, randomised controlled trial, designed to assess the impact of the addition of the SurvivorCare intervention to usual post-treatment care, for people with potentially cured CRC. SurvivorCare comprises the provision of survivorship educational materials, a tailored survivorship care plan, an individually tailored nurse-led, face-to-face end of treatment consultation and three subsequent telephone calls. Eligible patients have completed treatment for potentially cured CRC. Other eligibility criteria include stage I to III disease, age greater than 18 years and adequate understanding of English. All consenting patients complete questionnaires at three time points over a six-month period (baseline, two and six months). Measures assess psychological distress, unmet needs and quality of life. DISCUSSION: This supportive care package has the potential to significantly reduce individual suffering, whilst reducing the burden of follow-up on acute cancer services through enhanced engagement with and utilisation of general practitioners and community based services. If the intervention is successful in achieving the expected health benefits, it could be disseminated readily. All training and supporting materials have been developed and standardised. Furthermore, the intervention could easily be adapted to other cancer or chronic disease settings. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry ACTRN12610000207011.
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    Communication challenges experienced by migrants with cancer: A comparison of migrant and English-speaking Australian-born cancer patients
    Hyatt, A ; Lipson-Smith, R ; Schofield, P ; Gough, K ; Sze, M ; Aldridge, L ; Goldstein, D ; Jefford, M ; Bell, ML ; Butow, P (WILEY, 2017-10)
    OBJECTIVES: Understanding the difficulties faced by different migrant groups is vital to address disparities and inform targeted health-care service delivery. Migrant oncology patients experience increased morbidity, mortality and psychological distress, with this tentatively linked to language and communication difficulties. The objective of this exploratory study was to investigate the communication barriers and challenges experienced by Arabic, Greek and Chinese (Mandarin and Cantonese) speaking oncology patients in Australia. METHODS: This study employed a cross-sectional design using patient-reported outcome survey data from migrant and English-speaking Australian-born patients with cancer. Patients were recruited through oncology clinics and Australian state cancer registries. Data were collected regarding patient clinical and demographic characteristics and health-care and communication experiences. Data from the clinics and registries were combined for analysis. RESULTS: Significant differences were found between migrant groups in demographic characteristics, communication and health-care experiences, and information and care preferences. Chinese patients cited problems with understanding medical information, the Australian health-care system, and communicating with their health-care team. Conversely, Arabic- and Greek-speaking patients reported higher understanding of the health-care system, and less communication difficulties. CONCLUSIONS: Our study findings suggest that migrant groups differ from each other in their health communication expectations and requirements. Lower education and health literacy of some groups may play a role in poorer health outcomes. Public health interventions and assistance provided to migrants should be tailored to the specific needs and characteristics of that language or cultural group. Future research directions are discussed.
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    Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs: results from a randomised, controlled trial
    Aranda, S ; Jefford, M ; Yates, P ; Gough, K ; Seymour, J ; Francis, P ; Baravelli, C ; Breen, S ; Schofield, P (OXFORD UNIV PRESS, 2012-01)
    BACKGROUND: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. PATIENTS AND METHODS: One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). RESULTS: ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory/psychological (P=0.027) and procedural (P=0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P=0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P=0.035) at T2 but not at T3 (P=0.055) in ChemoEd patients. CONCLUSIONS: ChemoEd holds promise to improve patient treatment-related concerns and some physical/psychological outcomes; however, further research is required on more diverse patient populations to ensure generalisability.