Publications by authors named "Anna Ugalde"

52 Publications

Effective integration of caregivers and families as part of the care team for people with cancer.

Aust J Gen Pract 2021 08;50(8):527-531

BA (Hons), PhD, Associate Dean @ Research, School of Nursing @ Midwifery and Institute for Health Transformation, Deakin University, Geelong, Vic.

Background: Informal caregivers (family or friends of people with cancer) are a group of highly important people who support those diagnosed with cancer to remain at home and out of hospital, but this comes at a significant personal cost. Understanding strategies to support cancer caregivers is critical.

Objective: This article will present an overview of cancer caregiving and how the caregivers involved can be assisted by general practitioners (GPs). Two key approaches to general practice teams supporting caregivers will be explored: acknowledging and integrating caregivers as part of the care team and providing referrals into services and supports.

Discussion: The general practice team is ideally positioned to assist in the support of cancer caregivers. GPs can assist caregivers by acknowledging them as valid and important members of the care team and referring them into existing support programs. These strategies are central to supporting this important, but often forgotten, group of people affected by cancer.
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http://dx.doi.org/10.31128/AJGP-03-21-5897DOI Listing
August 2021

Understanding women's perspectives and information needs about shared follow-up care for early breast cancer: a qualitative study.

Fam Pract 2021 Jul 22. Epub 2021 Jul 22.

School of Nursing, Deakin University, Burwood Victoria, Australia.

Background: Shared breast cancer follow-up care involving a breast cancer specialist and a general practitioner (GP) has been demonstrated to be effective, yet barriers to participation in this model by women remain. This study explores the responses of women who recently finished active treatment for early breast cancer (EBC) to a proposed model of shared follow-up care to understand the type of information needed to support participation.

Methods: Qualitative study based on focus groups with women with EBC in the early stage of follow-up care from across metropolitan, regional and rural settings in Australia. Discussions were transcribed and thematic analysis is undertaken.

Results: Four focus groups were conducted, involving 31 women aged between 32 and 78 years. The discussion focused on two topics. In the first topic 'Current experiences of follow-up care', two themes emerged: (i) follow-up as a continuation of active treatment; (ii) GPs involvement in care during active treatment influence attitudes to shared follow-up care. In the second topic area 'Perceptions of shared follow-up care' four themes emerged: (i) a need for evidence regarding model effectiveness; (ii) choice; (iii) concerns regarding capacity and capability of GPs to deliver care and (iv) the need for clear communication between GPs, specialists and women.

Conclusions: Women need information regarding the evidence for the effectiveness of shared follow-up care to assure them it does not pose a risk to their health outcomes. Clear descriptions of GP and specialist roles and the opportunity to jointly decide participation is essential for the model to be adopted.
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http://dx.doi.org/10.1093/fampra/cmab048DOI Listing
July 2021

Improving access to cancer information and supportive care services: A systematic review of mechanisms applied to link people with cancer to psychosocial supportive care services.

Psychooncology 2021 Jun 7. Epub 2021 Jun 7.

Olivia Newton-John Cancer Wellness & Research Centre, Austin Health, Heidelberg, VIC, Australia.

Objective: Previous research has described the low uptake of psychosocial support services in people living with cancer. While characteristics of individuals using services have been examined, mechanisms applied to link individuals to support services are less frequently considered. This review aims to identify the mechanisms used to link people with cancer to support services and assess their impact.

Methods: Systematic searches of Pubmed, CINAHL, EMBASE and PsycINFO were conducted up to May 2020. Studies reporting service use associated with mechanisms to link adults with cancer to support services targeting emotional, informational, practical or social support needs were eligible. Eligible study designs included controlled trials, pre-post designs and observational studies. Study quality was assessed and a narrative synthesis of findings undertaken.

Results: A total of 10 papers (from 8,037 unique titles) were eligible. Testing the feasibility of the linkage mechanism was the primary aim in five (50%) studies. Three linkage mechanisms were identified: (a) outreach from the support service; (b) clinician recommendation/referral; (c) mailed invitation. Outreach was the most successful in connecting people with cancer to services (52%-90% use); clinician recommendation/referral was least successful (3%-28%). The impact of different linkage mechanisms for different demographic groups was not assessed.

Conclusions: Outreach from services shows the most potential for increasing access to support services. However, the limited number of studies and limitations in the types of support services people with cancer were linked to, demonstrated the need for further work in this area. Identifying mechanisms that are effective for underserved, high-needs patient groups is also needed.
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http://dx.doi.org/10.1002/pon.5744DOI Listing
June 2021

Hospital staff perspectives on the provision of smoking cessation care: a qualitative description study.

BMJ Open 2021 05 19;11(5):e044489. Epub 2021 May 19.

QUIT Victoria, Cancer Council Victoria, Melbourne, Victoria, Australia.

Objective: To explore the perspectives of hospital staff regarding the provision of smoking cessation care.

Study Design: A qualitative description study using focus group discussions.

Study Setting: Data were collected across metropolitan regional and rural hospitals in Victoria, Australia, between November and December 2019.

Participants: Clinical and non-clinical hospital staff.

Results: Five focus groups were conducted across four hospitals. Staff (n=38) across metropolitan regional and rural hospitals shared similar views with regards to barriers and facilitators of smoking cessation care. Four themes were present: (1) wherein views about opportunity and capacity to embed smoking cessation care, relevant policies and procedures and guidelines were discussed; (2) consisted of the need for training on the provision of pharmacotherapy and behavioural interventions, and awareness of resources; (3) represented the need for a consistently applied approach to smoking cessation care by all staff and included issues of staff smoking; and (4) consisted of questions around how smoking cessation care can be safely delivered in the context of challenging patient groups and different settings.

Conclusions: Staff across metropolitan regional and rural hospitals experience similar views and identified shared barriers in implementing smoking cessation care. Responding to staff concerns and providing support to address smoking with patients will help to foster a consistent approach to cessation care. Clear practice guidelines for multidisciplinary clinical roles need to underpin staff training in communication skills, include priorities around smoking cessation care, and provide the authorising environment in which clinical staff actively provide smoking cessation care.
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http://dx.doi.org/10.1136/bmjopen-2020-044489DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8137196PMC
May 2021

Examining the role of specialist palliative care in geriatric care to inform collaborations: a survey on the knowledge, practice and attitudes of geriatricians in providing palliative care.

Age Ageing 2021 Sep;50(5):1792-1801

School of Nursing and Midwifery, Institute for Health Transformation, Deakin University, Geelong, Victoria, Australia.

Background: The global population is ageing, and rates of multimorbidity and chronic illness are rapidly rising. Given specialist palliative care has been shown to improve overall care and reduce health care costs, how best to provide this care to older people is internationally significant.

Aim: To examine the knowledge, attitudes and practices of geriatricians in providing palliative care and working with specialist palliative care services. We also aimed to capture self-reported barriers, confidence and satisfaction in providing palliative care.

Design: A prospective cross-sectional study surveying Australasian geriatricians was conducted.

Setting/participants: This was a voluntary anonymous online survey, distributed to all full members of the Australian and New Zealand Society of Geriatric Medicine.

Results: A total of 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing palliative care (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist palliative care. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test.

Conclusions: Geriatricians find reward in providing generalist palliative care to their patients; however, potential exists for improved collaborations with specialist palliative care services. An evidence base for geriatric patients who benefit most from specialist palliative care services is needed to improve resourcing, collaborative practice and ultimately palliative care delivery.
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http://dx.doi.org/10.1093/ageing/afab058DOI Listing
September 2021

Commentary on 'Exclusion rates in randomized trials of treatments for physical conditions: a systematic review'.

Trials 2021 01 21;22(1):76. Epub 2021 Jan 21.

Research in Implementation Science and e-Health (RISe) Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia.

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http://dx.doi.org/10.1186/s13063-021-05019-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7818727PMC
January 2021

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments.

Value Health 2020 11 18;23(11):1477-1488. Epub 2020 Sep 18.

Deakin University, School of Health and Social Development, Deakin Health Economics, Institute for Health Transformation, Burwood, Victoria, Australia.

Objectives: To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies.

Methods: Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman's rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann-Whitney U, Kruskal-Wallis one-way analysis of variance).

Results: Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status.

Conclusions: The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.
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http://dx.doi.org/10.1016/j.jval.2020.07.005DOI Listing
November 2020

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis.

Med Decis Making 2020 10 25;40(7):885-896. Epub 2020 Jul 25.

Deakin University, Geelong, Deakin Health Economics, Institute for Health Transformation, School of Health and Social Development, Faculty of Health, Victoria, Australia.

To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.
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http://dx.doi.org/10.1177/0272989X20944193DOI Listing
October 2020

Outcomes of a randomized controlled trial assessing a smartphone Application to reduce unmet needs among people diagnosed with CancEr (ACE).

Cancer Med 2020 01 25;9(2):507-516. Epub 2019 Nov 25.

Faculty of Health, School of Psychology, Deakin University, Geelong, Vic., Australia.

Background: Smartphone technology represents an opportunity to deliver practical solutions for people affected by cancer at a scale that was previously unimaginable, such as information, appointment monitoring, and improved access to cancer support services. This study aimed to determine whether a smartphone application (app) reduced the unmet needs among people newly diagnosed with cancer.

Methods: A single blind, multisite randomized controlled trial to determine the impact of an app-based, 4-month intervention. Newly diagnosed cancer patients were approached at three health service treatment clinics.

Results: Eighty-two people were randomized (intervention; n = 43 and control; n = 39), average age was 59.5 years (SD: 12.9); 71% female; 67% married or in a de facto relationship. At baseline, there were no differences in participants' characteristics between the groups. No significant effects, in reducing unmet needs, were demonstrated at the end of intervention (4-month) or 12-month follow-up. Overall, 94% used the app in weeks 1-4, which decreased to 41% in weeks 13-16. Mean app use time per participant: Cancer Information, 6.9 (SD: 18.9) minutes; Appointment Schedule, 5.1 (SD: 9.6) minutes; Cancer Services 1.5 minutes (SD: 6.8); Hospital Navigation, 1.4 (SD: 2.8) minutes.

Conclusions: Despite consumer involvement in the design of this smartphone technology, the app did not reduce unmet needs. This may have been due to the study being underpowered. To contribute to a meaningful understanding and improved implementation of smartphone technology to support people affected by cancer, practical considerations, such as recruitment issues and access to, and confidence with, apps, need to be considered. Australian New Zealand Clinical Trials Registration (ACTRN) Trial Registration: 12616001251415; WEF 7/9/2016.
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http://dx.doi.org/10.1002/cam4.2718DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6970035PMC
January 2020

A model of cancer survivorship care within a community health setting: the Good Life Cancer Survivorship program.

J Cancer Surviv 2020 02 9;14(1):36-42. Epub 2019 Nov 9.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.

Purpose: This study aimed to establish and evaluate the referral pathway from a hospital-based oncology service to a multidisciplinary community-based health service supporting survivors to engage in self-management.

Method: The evaluation involved understanding patterns of health service utilisation and health professionals' perspectives on the implementation of the community-based model of survivorship care, the Good Life Cancer Survivorship (GLCS) program. Survivors referred to GLCS were undergoing or had completed cancer treatment and unable to participate in intensive ambulatory oncology rehabilitation. Health service utilisation was tracked over 5 months, and the perspectives of health professionals referring to and involved in the GLCS program were recorded using semi-structured interviews.

Results: The oncology service made 25 referrals. The most accessed services at Carrington Health were physiotherapy with 18 appointments, followed by psychology (12) and dietitian services (11). Four themes emerged from the interviews: (1) Allied health services are relevant to people with cancer; (2) Education and information needs; (3) Communication gaps; (4) A one-stop multidisciplinary and holistic care model.

Conclusion: This project demonstrated that community health may be a valid setting to support cancer survivors in managing their health. Supporting ongoing awareness, education and understanding of services across both community and acute care settings will foster care coordination and strengthen referral pathways.

Implications For Cancer Survivors: Accessing appropriate community-based allied health services can support cancer survivors in developing self-management skills to manage their own health and improve their health outcomes and wellbeing in the survivorship phase.
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http://dx.doi.org/10.1007/s11764-019-00821-6DOI Listing
February 2020

Relevance of mindfulness practices for culturally and linguistically diverse cancer populations.

Psychooncology 2019 11 16;28(11):2250-2252. Epub 2019 Sep 16.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Burwood, Victoria, Australia.

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http://dx.doi.org/10.1002/pon.5221DOI Listing
November 2019

Understanding rural caregivers' experiences of cancer care when accessing metropolitan cancer services: a qualitative study.

BMJ Open 2019 07 11;9(7):e028315. Epub 2019 Jul 11.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.

Objective: To explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.

Design: A qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers' lived experiences.

Setting: Participants were from rural areas attending a metropolitan cancer centre in Australia and social workers.

Participants: 21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.

Results: Thematic analysis developed two overarching themes: theme 1: describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: 'Rural community and culture', 'Life adjustments' and 'Available supports'. Theme 2: captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: 'Travel', 'Accommodation' and 'Health system navigation'.

Conclusions: Caregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.
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http://dx.doi.org/10.1136/bmjopen-2018-028315DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6629412PMC
July 2019

"An Ambition to Make People Feel at Home" or "The Emperor's New Clothes"? Professional stakeholder views of wellness centres in cancer care.

Eur J Cancer Care (Engl) 2019 Jul 15;28(4):e13096. Epub 2019 May 15.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.

Objective: Wellness centres offer people affected by cancer to access to information and services in a supportive environment. This study aimed to understand stakeholder opinions and perspectives about the potential of wellness centres to contribute to cancer care.

Methods: This study adopted a qualitative approach with health professionals, leaders of key cancer organisations and cancer policy stakeholders interviewed. Results were analysed with thematic analysis.

Results: Twenty-three stakeholders representing 13 organisations participated. The following three key themes were identified: (a) The promise and ambition of wellness centres; (b) The hesitations and questions; and (c) Optimising wellness. While many recognised the ambition of wellness centres to offer non-clinical spaces and support for patients and family, there were several concerns raised about the drivers, evidence, throughput, access and equity of services, in the context of other cancer care priorities. Participants made recommendations that focused on use of data; models of community or clinical integration; accessibility and scope; approaches to engaging minority or disadvantaged groups and contribution to cancer care and psycho-oncology.

Conclusion: Professional stakeholders hold varied views about the potential of wellness centres in contributing to cancer care. Research opportunities include understanding models of community clinical engagement and how to engage minority or disadvantaged populations to ensure equity of access.
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http://dx.doi.org/10.1111/ecc.13096DOI Listing
July 2019

Identifying priorities for cancer caregiver interventions: protocol for a three-round modified Delphi study.

BMJ Open 2019 02 13;9(2):e024725. Epub 2019 Feb 13.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.

Introduction: Cancer is often considered a chronic disease, and most people with cancer have a caregiver, often a family member or friend who provides a significant amount of care during the illness trajectory. Caregivers are frequently in need of support, and a range of interventions have been trialled to improve outcomes. Consensus for optimal ways to support caregivers is not known. The aim of this protocol paper is to describe procedures for a modified Delphi study to explore expert consensus about important factors when developing caregiver interventions.

Methods And Analysis: Online modified Delphi methodology will be used to establish consensus for important caregiver intervention factors incorporating the Patient problem, Intervention, Comparison and Outcome framework. Round 1 will comprise a free-text questionnaire and invite the panel to contribute factors they deem important in the development and evaluation of caregiver interventions. Round 2 is designed to determine preliminary consensus of the importance of factors generated in round 1. The panel will be asked to rate each factor using a 4-point Likert-type scale. The option for panellists to state reasoning for their rating will be provided. Descriptive statistics (median scores and IQR) will be calculated to determine each item's relative importance. Levels of consensus will be assessed based on a predefined consensus rating matrix. In round 3, factors will be recirculated including aggregate group responses (statistics and comment summaries) and panellists' own round 2 scores. Panellists will be invited to reconsider their judgements and resubmit ratings using the same rating system as in round 2. This will result in priority lists based on the panel's total rating scores.

Ethics And Dissemination: Ethics for this study has been gained from the Deakin University Human Ethics Advisory Group. It is anticipated that the results will be published in peer-reviewed journals and presented in a variety of forums.
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http://dx.doi.org/10.1136/bmjopen-2018-024725DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398770PMC
February 2019

Technology-Supported Self-Guided Nutrition and Physical Activity Interventions for Adults With Cancer: Systematic Review.

JMIR Mhealth Uhealth 2019 02 12;7(2):e12281. Epub 2019 Feb 12.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Burwood, Australia.

Background: Nutrition and physical activity interventions are important components of cancer care. With an increasing demand for services, there is a need to consider flexible, easily accessible, and tailored models of care while maintaining optimal outcomes.

Objective: This systematic review describes and appraises the efficacy of technology-supported self-guided nutrition and physical activity interventions for people with cancer.

Methods: A systematic search of multiple databases from 1973 to July 2018 was conducted for randomized and nonrandomized trials investigating technology-supported self-guided nutrition and physical activity interventions. Risk of bias was assessed using the Cochrane Risk of Bias tool. Outcomes included behavioural, health-related, clinical, health service, or financial measures.

Results: Sixteen randomized controlled trials representing 2684 participants were included. Most studies were web-based interventions (n=9) and had a 12-week follow-up duration (n=8). Seven studies assessed dietary behaviour, of which two reported a significant benefit on diet quality or fruit and vegetable intake. Fifteen studies measured physical activity behaviour, of which eight studies reported a significant improvement in muscle strength and moderate-to-vigorous physical activity. Four of the nine studies assessing the health-related quality of life (HRQoL) reported a significant improvement in global HRQoL or a domain subscale. A significant improvement in fatigue was found in four of six studies. Interpretation of findings was influenced by inadequate reporting of intervention description and compliance.

Conclusions: This review identified short-term benefits of technology-supported self-guided interventions on the physical activity level and fatigue and some benefit on dietary behaviour and HRQoL in people with cancer. However, current literature demonstrates a lack of evidence for long-term benefit.

Trial Registration: PROSPERO CRD42017080346; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=80346.
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http://dx.doi.org/10.2196/12281DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390188PMC
February 2019

A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice.

Psychooncology 2019 04 7;28(4):687-701. Epub 2019 Mar 7.

School of Nursing and Midwifery, Deakin University, Geelong, Victoria, Australia.

Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.

Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.

Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.

Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.
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http://dx.doi.org/10.1002/pon.5018DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6594143PMC
April 2019

Common dedication to facilitating good dying experiences: Qualitative study of end-of-life care professionals' attitudes towards voluntary assisted dying.

Palliat Med 2019 06 28;33(6):562-569. Epub 2019 Jan 28.

4 Faculty of Health, Deakin University, Burwood, VIC, Australia.

Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals' role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered.

Aim: To explore end-of-life care professionals' attitudes towards voluntary assisted dying 6 months prior to vote on legalization.

Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques.

Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness.

Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available.

Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.
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http://dx.doi.org/10.1177/0269216318824276DOI Listing
June 2019

A pilot randomised controlled trial of an online mindfulness-based program for people diagnosed with melanoma.

Support Care Cancer 2019 Jul 30;27(7):2735-2746. Epub 2018 Nov 30.

School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.

Purpose: This study assessed the feasibility and acceptability of an online mindfulness-based intervention (MBI) for people diagnosed with melanoma. The potential benefit of the MBI on fear of cancer recurrence (FCR), worry, rumination, perceived stress and trait mindfulness was also explored.

Methods: Participants who have completed treatment for stage 2c or 3 melanoma were recruited from an outpatient clinic and randomly allocated to either the online MBI (intervention) or usual care (control). The 6-week online MBI comprised short videos, daily guided meditations and automated email reminders. Participants were asked to complete questionnaires at baseline and at 6-week post-randomisation. Study feasibility and acceptability were assessed through recruitment rates, retention and participant feedback. Clinical and psychosocial outcomes were compared between groups using linear mixed models.

Results: Sixty-nine (58%) eligible participants were randomised (46 in the intervention; 23 in the control group); mean age was 53.4 (SD 13.1); 54% were female. Study completion rate across both arms was 80%. The intervention was found helpful by 72% of the 32 respondents. The intervention significantly reduced the severity of FCR compared to the control group (mean difference = - 2.55; 95% CI - 4.43, - 0.67; p = 0.008). There was no difference between the intervention and control groups on any of the outcome measures.

Conclusions: This online MBI was feasible and acceptable by people at high risk of melanoma recurrence. It significantly reduced FCR severity in this sample. Patients valued accessing the program at their own pace and convenience. This self-guided intervention has the potential to help survivors cope with emotional difficulties. An adequately powered randomised controlled trial to test study findings is warranted.
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http://dx.doi.org/10.1007/s00520-018-4574-6DOI Listing
July 2019

Developing a Research Agenda for Adult Palliative Care: A Modified Delphi Study.

J Palliat Med 2019 May 21;22(5):480-488. Epub 2018 Nov 21.

1 School of Psychology, Curtin University, Perth, Australia.

Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation. The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia. A modified three-round Delphi survey. Palliative care researchers and clinicians in Australia were invited to participate. A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations. The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.
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http://dx.doi.org/10.1089/jpm.2018.0462DOI Listing
May 2019

Digital Characteristics and Dissemination Indicators to Optimize Delivery of Internet-Supported Mindfulness-Based Interventions for People With a Chronic Condition: Systematic Review.

JMIR Ment Health 2018 Aug 21;5(3):e53. Epub 2018 Aug 21.

School of Nursing and Midwifery, Deakin University, Geelong, Australia.

Background: Internet-supported mindfulness-based interventions (MBIs) are increasingly being used to support people with a chronic condition. Characteristics of MBIs vary greatly in their mode of delivery, communication patterns, level of facilitator involvement, intervention period, and resource intensity, making it difficult to compare how individual digital features may optimize intervention adherence and outcomes.

Objective: The aims of this review were to (1) provide a description of digital characteristics of internet-supported MBIs and examine how these relate to evidence for efficacy and adherence to the intervention and (2) gain insights into the type of information available to inform translation of internet-supported MBIs to applied settings.

Methods: MEDLINE Complete, PsycINFO, and CINAHL databases were searched for studies assessing an MBI delivered or accessed via the internet and engaging participants in daily mindfulness-based activities such as mindfulness meditations and informal mindfulness practices. Only studies using a comparison group of alternative interventions (active compactor), usual care, or wait-list were included. Given the broad definition of chronic conditions, specific conditions were not included in the original search to maximize results. The search resulted in 958 articles, from which 11 articles describing 10 interventions met the inclusion criteria.

Results: Internet-supported MBIs were more effective than usual care or wait-list groups, and self-guided interventions were as effective as facilitator-guided interventions. Findings were informed mainly by female participants. Adherence to interventions was inconsistently defined and prevented robust comparison between studies. Reporting of factors associated with intervention dissemination, such as population representativeness, program adoption and maintenance, and costs, was rare.

Conclusions: More comprehensive descriptions of digital characteristics need to be reported to further our understanding of features that may influence engagement and behavior change and to improve the reproducibility of MBIs. Gender differences in determinants and patterns of health behavior should be taken into account at the intervention design stage to accommodate male and female preferences. Future research could compare MBIs with established evidence-based therapies to identify the population groups that would benefit most from internet-supported programs.

Trial Registration: PROSPERO CRD42017078665; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=78665 (Archived by WebCite at http://www.webcitation.org/71ountJpu).
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http://dx.doi.org/10.2196/mental.9645DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6123540PMC
August 2018

Towards a framework for reporting self-guided interventions for people with cancer.

Curr Opin Support Palliat Care 2018 09;12(3):293-298

Cancer Council Australia, Sydney, Australia.

Purpose Of Review: The purpose of this article is to provide an updated review exploring the recent developments in the field of self-guided interventions and describe the state of knowledge. This article builds on a previous systematic review on self-guided interventions, finding that the recent literature demonstrates that evidence for these interventions is mixed. The field is limited by descriptions of these interventions, and it is not possible to ascertain what aspects of interventions are more successful.

Recent Findings: Development of a reporting framework whereby self-guided interventions could be clearly presented, would be a substantial contribution to understanding the evidence for these studies. Recent findings also support the need to understand patient adherence and engagement, which could be achieved within a reporting framework. Additionally, ensuring patient safety is paramount and all studies should develop strategies to ensure patients can engage with these studies in a way that allows them to access more help and support if required.

Summary: Self-guided interventions have potential for implementation and further translation because of being cost-effective and requiring few resources; and a reporting framework has the capacity to lead to clearer definitions and descriptions; and significantly improve the quality of evidence for these studies.
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http://dx.doi.org/10.1097/SPC.0000000000000353DOI Listing
September 2018

Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.

Support Care Cancer 2018 Nov 11;26(11):3765-3771. Epub 2018 May 11.

Faculty of Health, School of Nursing & Midwifery, Deakin University, 1 Gheringhap St, Geelong, VIC, Australia.

Purpose: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes.

Methods: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre.

Results: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful.

Conclusions: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.
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http://dx.doi.org/10.1007/s00520-018-4241-yDOI Listing
November 2018

Feasibility of an online mindfulness-based program for patients with melanoma: study protocol for a randomised controlled trial.

Trials 2018 Apr 13;19(1):223. Epub 2018 Apr 13.

Deakin University, School of Nursing and Midwifery, Faculty of Health, Geelong, Australia.

Background: People with a melanoma diagnosis are at risk of recurrence, developing a new primary or experiencing disease progression. Previous studies have suggested that fear of a cancer recurrence is clinically relevant in this group of patients and, if not addressed, can lead to distress. Mindfulness-based interventions have been shown to alleviate symptoms of anxiety and depression among various groups of cancer patients. Online mindfulness-based interventions have the potential to reach people unable to attend face-to-face interventions due to limitations such as cancer-related illness, transportation or time constraints. This study aims to (1) examine whether individuals with a melanoma diagnosis are willing to participate and adhere to a 6-week online mindfulness-based intervention and (2) explore potential benefits of the program on fear of cancer recurrence, worries, rumination, perceived stress and trait mindfulness to inform the design of a clinical trial.

Methods/design: This is a single-site randomised controlled trial of a feasibility study. Seventy-five participants with stage 2c or 3 melanoma will be recruited from a melanoma outpatient clinic and randomised (2:1) either to an online mindfulness-based program (intervention) or to usual care (control). The intervention is a 6-week program specifically developed for this study. It consists of videos describing the concept of mindfulness, short daily guided meditation practices (5-10 min), automated meditation reminders and instructions for applying mindfulness in daily life to enhance wellbeing. All participants will complete questionnaires at baseline and at 6-week post-randomisation. Participants in the control group will be given access to the online program at the end of the study. Primary outcomes are overall recruitment; retention; extent of questionnaire completion; and usability and acceptability of, and adherence to, the program. The secondary outcomes are fear of cancer recurrence, worries, rumination, perceived stress and trait mindfulness measured using validated instruments.

Discussion: This feasibility study will evaluate participants' satisfaction with the program and identify barriers to recruitment and adherence. The recruitment and data collection process will highlight methodological aspects to address in the planning of a larger scale study assessing the impact of an online mindfulness-based intervention on fear of cancer recurrence and wellbeing.

Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12617000081314 . Registered on 16 January 2017.
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http://dx.doi.org/10.1186/s13063-018-2575-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5899401PMC
April 2018

Predictors of long-term distress in female partners of men diagnosed with prostate cancer.

Psychooncology 2018 03 26;27(3):946-954. Epub 2018 Jan 26.

Menzies Health Institute Queensland, Griffith University, Southport, QLD, Australia.

Objective: Female partners of men with prostate cancer (PCa) experience heightened psychological distress; however, long-term distress for this group is not well described. We examined partner's psychological and cancer-specific distress over 2 years and predictors of change.

Methods: A cohort of 427 female partners (63% response; mean age 62.6 y) of PCa survivors completed baseline (2-4 y post-PCa treatment) assessments of anxiety, depression, and cancer-specific distress and were followed up at 6, 12, 18, and 24 months. Caregiver burden, threat and challenge appraisal, self-efficacy, and dyadic adjustment were assessed as potential predictors of distress.

Results: Over time, 23% to 25% of women reported anxiety; 8% to 11% depression; 5% to 6% high cancer-specific distress. Higher caregiver burden and more threat appraisals were associated with increased distress, anxiety, depression, and cancer-specific distress over time. Higher dyadic adjustment over time and more challenge appraisals at 24 months were associated with less distress, anxiety, and depression. Increased partner self-efficacy was associated with lower distress and depression at baseline.

Conclusions: A substantial subgroup of partners experience ongoing anxiety, with depression less prevalent but also persistent. Caregiver burden, partner self-efficacy, threat, and challenge appraisals present as potential supportive care targets.
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http://dx.doi.org/10.1002/pon.4617DOI Listing
March 2018

A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study.

Palliat Med 2018 04 13;32(4):726-732. Epub 2017 Dec 13.

2 Statewide Progressive Neurological Diseases Service, Calvary Health Care Bethlehem, South Caulfield, VIC, Australia.

Background: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them.

Aim: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND.

Design: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible.

Results: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problem-solving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention.

Conclusion: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.
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http://dx.doi.org/10.1177/0269216317743434DOI Listing
April 2018

Mobile Health Intervention to Increase Oral Cancer Therapy Adherence in Patients With Chronic Myeloid Leukemia (The REMIND System): Clinical Feasibility and Acceptability Assessment.

JMIR Mhealth Uhealth 2017 Dec 6;5(12):e184. Epub 2017 Dec 6.

Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia.

Background: Optimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure.

Objective: The objective of this study was to develop and pilot-test the clinical feasibility and acceptability of a mobile health system (REMIND) to increase oral drug adherence and patient symptom self-management among people with CML (chronic phase).

Methods: A multifaceted intervention was iteratively developed using the intervention development framework by Schofield and Chambers, consisting of defining the patient problem and iteratively refining the intervention. The clinical feasibility and acceptability were examined via patient and intervention nurse interviews, which were audiotaped, transcribed, and deductively content analyzed.

Results: The intervention comprised 2 synergistically operating elements: (1) daily medication reminders and routine assessment of side effects with evidence-based self-care advice delivered in real time and (2) question prompt list (QPL) questions and routinely collected individual patient adherence and side effect profile data used to shape nurses' consultations, which employed motivational interviewing to support adoption of self-management behaviors. A total of 4 consultations and daily alerts and advice were delivered over 10 weeks. In total, 58% (10/17) of patients and 2 nurses participated in the pilot study. Patients reported several benefits of the intervention: help in establishing medication routines, resolution of symptom uncertainty, increased awareness of self-care, and informed decision making. Nurses also endorsed the intervention: it assisted in establishing pill-taking routines and patients developing effective solutions to adherence challenges.

Conclusions: The REMIND system with nurse support was usable and acceptable to both patients and nurses. It has the potential to improve adherence and side-effect management and should be further evaluated.
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http://dx.doi.org/10.2196/mhealth.8349DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5738545PMC
December 2017

Morphine use in cancer care: A survey of attitudes and perceptions in general practice patients.

Aust Fam Physician 2017 Oct;46(10):775-780

Background: Morphine is widely prescribed for patients with cancer, although a number of attitudes have been cited as barriers to its use, including fear, addiction and associations with death. The aim of this study was to explore the nature of these beliefs, and assess the extent to which these attitudes exist in a general practice patient population that may require morphine in the future.

Methods: A 30-item survey was distributed through general practices in Victoria, Australia.

Results: Of the 379 questionnaires distributed, 290 were collected (76.5%). Participants were predominantly neutral on questions regarding the effect of morphine on the duration of life. Morphine was seen to be prescribed responsibly (73.5%), even while most perceived its potential for addiction (69.7%). Participants with experience of morphine use had more negative perceptions regarding its efficacy.

Discussion: Conversations regarding morphine use should include a discussion about the beliefs and experiences of the individual, many of which may reinforce the utility of morphine.
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October 2017

Exploring Knowledge, Attitudes, and Practice Associated With Meditation Among Patients With Melanoma.

Integr Cancer Ther 2018 06 24;17(2):237-247. Epub 2017 Mar 24.

1 Deakin University, Geelong, Victoria, Australia.

Aim: To explore the knowledge, attitudes, and practices associated with meditation among people with melanoma and investigate the relationship between perceived stress, trait mindfulness, and meditation. Factors associated with interest to participate in an online meditation program were also explored.

Methods: A survey-based cross-sectional study of 291 patients attending a melanoma outpatient clinic assessed knowledge of meditation, attitudes toward meditation using Determinants of Meditation Practice Inventory (DMPI), and meditation experience. Perceived stress and trait mindfulness were measured using the Perceived Stressed Scale and Cognitive and Affective Mindfulness Scale, respectively.

Results: Participants who had tried meditation (43%) were likely to be younger, female, and have completed higher education or be employed. Perceived stress score was higher among women, younger participants, and those treated in the past year but did not differ by melanoma stage. Participants reported a good understanding of the potential benefits of meditation, but even among people with meditation experience, common misconceptions prevailed. The main barrier to meditation was a perceived lack of knowledge about meditation . Higher DMPI scores were associated with lower education, moderate to low access to service centers, or living in disadvantaged neighborhoods . Participants practicing meditation that involved self-reflection reported less stress and higher trait mindfulness compared with participants practicing another type of meditation. People interested in participating in an online meditation-based program reported higher perceived stress than those not interested.

Conclusion: A meditation-based intervention teaching self-reflective practices, targeted at people with melanoma, may have the potential to assist them with managing their stress.
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http://dx.doi.org/10.1177/1534735417699514DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6041905PMC
June 2018
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