ORCID Profile
0000-0003-1570-8872
Current Organisations
University of Notre Dame Australia - Broadway Campus
,
University of Sydney
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Publisher: Springer Science and Business Media LLC
Date: 24-05-2021
Publisher: SAGE Publications
Date: 12-08-2016
Abstract: Discussion of religion and/or spirituality in the medical consultation is desired by patients and known to be beneficial. However, it is infrequent. We aimed to identify why this is so. We set out to answer the following research questions: Do doctors report that they ask their patients about religion and/or spirituality and how do they do it? According to doctors, how often do patients raise the issue of religion and/or spirituality in consultation and how do doctors respond when they do? What are the known facilitators and barriers to doctors asking their patients about religion and/or spirituality? A mixed qualitative/quantitative review was conducted to identify studies exploring the physician’s perspective on discussion of religion and/or spirituality in the medical consultation. We searched nine databases from inception to January 2015 for original research papers reporting doctors’ views on discussion of religion and/or spirituality in medical consultations. Papers were assessed for quality using QualSyst and results were reported using a measurement tool to assess systematic review guidelines. Overall, 61 eligible papers were identified, comprising over 20,044 physician reports. Religion and spirituality are discussed infrequently by physicians although frequency increases with terminal illness. Many physicians prefer chaplain referral to discussing religion and/or spirituality with patients themselves. Such discussions are facilitated by prior training and increased physician religiosity and spirituality. Insufficient time and training were the most frequently reported barriers. This review found that physician enquiry into the religion and/or spirituality of patients is inconsistent in frequency and nature and that in order to meet patient needs, barriers to discussion need to be overcome.
Publisher: SAGE Publications
Date: 17-03-2021
Abstract: This contribution reflects on some of the most prominent findings in the survey on the chaplaincy response to the COVID-19 pandemic. The finding that chaplain respondents had difficulty understanding their own role prior to the first wave is of concern. If chaplains cannot articulate their own role, it is not surprising that those around them are also unclear. Chaplains are not the only ones to blame for the confusion around their role though.
Publisher: Springer Science and Business Media LLC
Date: 20-02-2023
DOI: 10.1007/S10943-023-01767-X
Abstract: While there is high patient acceptance for clinical staff discussing issues regarding spirituality with hospital inpatients, it is not clear which staff member patients prefer for these discussions. This unique exploratory study investigated inpatient preferences regarding which staff member should raise the topic of spirituality. A cross-sectional survey was conducted with inpatients at six hospitals in Sydney, Australia ( n = 897), with a subset invited to participate in qualitative interviews ( n = 41). Pastoral care staff (32.9%) were the preferred staff members with whom to discuss spiritual issues, followed by doctors (22.4%). Qualitative findings indicated that in idual characteristics of the staff member are more important than their role.
Publisher: American Psychological Association (APA)
Date: 06-2022
DOI: 10.1037/HEA0001181
Abstract: Comprehensive tumor genomic profiling (CGP) offers hope for personalized treatment for cancer patients when other treatment options have been exhausted. However, receipt of nonactionable or ambiguous results could be an ongoing source of distress. We investigated patterns of hope, anxiety, depression, and CGP-specific anxiety in advanced cancer patients after receiving CGP results and 2-3 months later. Participants were enrolled in a longitudinal psychosocial substudy, embedded in the Molecular Screening and Therapeutics Program, and had advanced solid cancers of any histological type with sufficient and accessible tissue for CGP. At T0 (before receiving CGP results), 1,431 participants completed sociodemographic, disease and psychosocial measures. At T1 (1-4 weeks after receiving CGP results) and T2 (2-3 months post-T1), 374 participants completed psychological outcome measures. Predictors of outcomes at T2 were identified using multinomial logistic regression. Approximately 75% of participants did not experience significant hopelessness or distress at T1 and T2. Hope decreased by T2, yet general anxiety and CGP-specific anxiety also decreased. Receiving actionable results did not impact psychological outcomes at T2. At T2, lower hope, and higher anxiety, depression and CGP-specific anxiety were associated with lower self-efficacy. Psychological and demographic factors (age, socioeconomic status, language, medical occupation, urban living, family history of cancer) independently predicted one or more psychological trajectories. Worse health status and perceived susceptibility to cancer progression predicted hope and anxiety trajectories. Further research on interventions to best support patients undergoing CGP with high anxiety, hopelessness, fear of cancer progression, and poorer health is urgently needed. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Publisher: Wiley
Date: 09-03-2015
DOI: 10.1002/PON.3795
Abstract: Patient suffering is a neglected area of care, partly because of poor definitions. The aim of this study was to distill what is currently known about suffering in the health literature in order to generate a conceptual basis for further research. A systematic review focusing on suffering across all cancers was undertaken. The search included peer-reviewed English articles published between 1992 and 2012 in MEDLINE, Embase, PsycINFO and the Cochrane Library databases focusing on conceptualisation of suffering in adult cancer patients. Seminal theoretical articles conceptualising suffering more generally were also eligible. To ensure identification of a sufficiently broad range of conceptualisations of suffering in cancer, the search strategy was drafted iteratively. Study findings were subjected to conceptual analysis using the evolutionary method. One hundred twenty-eight studies were identified, which discussed definitions or conceptualisations of suffering. In terms of its attributes, suffering is defined as 'an all-encompassing, dynamic, in idual phenomenon characterized by the experience of alienation, helplessness, hopelessness and meaninglessness in the sufferer which is difficult for them to articulate. It is multi-dimensional and usually incorporates an undesirable, negative quality.' Surrogate terms, antecedents and consequences of suffering are described. The systematic review revealed that suffering includes holistic suffering, which is multidimensional, oscillating, in idual and difficult for in iduals to express. Opportunities should be provided for patients to express their suffering. The potential for suffering to be transcended needs to be recognized and facilitated by healthcare staff.
Publisher: Springer Science and Business Media LLC
Date: 20-12-2013
DOI: 10.1007/S00520-013-2091-1
Abstract: Spiritual care is reported as important for cancer patients, but the role of the doctor in its provision is unclear. We undertook to understand the nature of spiritual support for Australian cancer patients and their preferences regarding spiritual care from doctors. Using grounded theory, semistructured interviews were conducted with 15 cancer patients with advanced disease in a variety of care settings. Patients were asked about the source of their spiritual support and how they would like their doctors to engage with them on spiritual issues. Three themes were identified as follows: (1) sources of spiritual support which helped patients cope with illness and meet spiritual needs, (2) facilitators of spiritual support, and (3) role of the doctor in spiritual support. Regardless of religious background, the majority of patients wanted their doctor to ask about their source of spiritual support and facilitate access to it. Patients did not want spiritual guidance from their doctors, but wanted to be treated holistically and to have a good relationship, which allowed them to discuss their fears. Doctors' understanding of the spiritual dimension of the patient was part of this. Spirituality is a universal phenomenon. Patients in a secular society want their doctor to take an interest in their spiritual support and facilitate access to it during illness.
Publisher: The Royal Australian College of General Practitioners
Date: 03-2020
Publisher: BMJ
Date: 04-03-2021
Publisher: The Royal Australian College of General Practitioners
Date: 2020
Publisher: Springer Science and Business Media LLC
Date: 10-05-2022
Publisher: Impact Journals, LLC
Date: 12-10-2021
Publisher: Elsevier BV
Date: 03-2022
DOI: 10.1016/J.PEC.2021.07.004
Abstract: Germline genome sequencing (GS) is becoming mainstream in cancer diagnosis and risk management. Identifying knowledge gaps and determinants of health behavior change intentions will enable effective targeting of educational and management strategies to translate genomic findings into improved cancer outcomes. Probands diagnosed with cancer of likely genetic origin that consented to but not yet undergone GS, and their biological relatives, completed a cross-sectional questionnaire assessing GS knowledge and hypothetical intention to change behaviors. Probands (n = 348 57% university educated) and relatives (n = 213 38% university educated) had moderate GS knowledge levels, with greater knowledge associated with higher education. Both populations reported high behavioral change intentions, significantly associated with being female (p = 0.01) and greater perceived importance of GS (p < 0.001), and for probands: being from English-speaking households (p = 0.003), higher socio-economic status (p = 0.01) and greater self-efficacy (p = 0.02). Increasing GS knowledge will enable realistic participant expectations surrounding germline GS. Actual behavior change should be monitored to determine whether increased cancer risk knowledge results in altered cancer-related behavior and ultimately, cancer outcomes. Educational resources should target specific populations to ensure informed decision-making and expectation management. Support tools facilitating and maintaining behavioral change may be needed to achieve improved cancer patient outcomes.
Publisher: Springer Science and Business Media LLC
Date: 09-07-2022
DOI: 10.1007/S00520-022-07272-3
Abstract: The introduction of comprehensive tumour genomic profiling (CGP) into clinical oncology allows the identification of molecular therapeutic targets. However, the potential complexity of genomic results and their implications may cause confusion and distress for patients undergoing CGP. We investigated the experience of advanced cancer patients receiving CGP results in a research setting. Semi-structured interviews with 37 advanced cancer patients were conducted within two weeks of patients receiving CGP results. Interviewees were purposively s led based on CGP result, cancer type, age and gender to ensure ersity. Themes were derived from interview transcripts using a framework analysis approach. We identified six themes: (1) hoping against the odds (2) managing expectations (3) understanding is cursory (4) communication of results is cursory (5) genomics and incurable cancer and (6) decisions about treatment. Despite enthusiasm regarding CGP about the hope it provides for new treatments, participants experienced challenges in understanding results, and acceptance of identified treatments was not automatic. Support is needed for patients undergoing CGP to understand the implications of testing and cope with non-actionable results.
Publisher: Wiley
Date: 11-2021
DOI: 10.1111/IMJ.15421
Abstract: Spirituality is a fundamental dimension of our human nature that impacts on medical care and yet is relatively neglected by medical education courses in Australia. This systematic review was conducted to assess the curriculum content currently used to develop medical student understanding of, and engagement with, spirituality in the context of patient care. Studies published in English from 2010 to the review date were included in order to focus on the most recent curricula. Studies included medical students in undergraduate or postgraduate programmes, doctors in resident training programmes and registrars. Interventions considered for inclusion were curriculum modules on communication skills in spirituality, spiritual needs assessments and holistic care planning. Six databases, including PubMed, Scopus, PsycINFO, Embase, Medline and CINAHL, were searched electronically using the following keywords and MeSH search terms: 'medical students', 'doctor', 'physician', 'spirituality', 'spiritual care', 'religion', 'education', 'history taking' and 'communication skills training' from 2010 to 2020. For 342 articles, three researchers screened the titles and abstracts disagreements were resolved by discussion. Full-text articles were assessed for eligibility based on study and report characteristics 17 papers were included in the analysis. Curriculum content of each study was reviewed. The following key features were employed frequently: chaplain shadowing, communications skills training, self-reflection, examining evidence and relationship building. This review has determined the core content, aims and objectives to guide construction of spirituality curricula in Australian medical education.
Publisher: Elsevier BV
Date: 07-2022
Publisher: Cambridge University Press (CUP)
Date: 29-07-2016
DOI: 10.1017/S0953820816000133
Abstract: Largely in response to Epicurus’ famous challenge, philosophers have been quite imaginative in coming up with ways in which death is bad. Most often, death is described as an instrumental bad. Given that I would have obtained additional welfare benefits had I not died when I did, my death causes me to miss out on intrinsic goods I might otherwise have obtained. In this article, however, I argue that the standard account (and its corollaries) misses an important feature of the dis/value of death. I argue that some deaths can be good – intrinsically good – for the person who dies.
Publisher: Informa UK Limited
Date: 13-09-2022
DOI: 10.1080/08854726.2020.1814089
Abstract: National Guidelines for Spiritual Care in Australia recommend incorporation of spiritual care in multidisciplinary patient care planning, however it is not known how consistently this is done. A qualitative interview study was designed to explore the practices of pastoral care practitioners in two city hospitals in Australia. Fourteen pastoral care practitioners participated (100% response rate). Interviews were taped and transcribed verbatim. Transcripts were analysed according to thematic analysis. Six themes were identified in the data. These were: (1) a vocation, (2) the role of pastoral care, (3) documentation, (4) communication with other ward staff, (5) barriers to communication, and (6) official recognition of pastoral care workers. While pastoral care workers are convinced of the importance of their work, they experience challenges in expressing this to their colleagues, which may reduce their impact on patient care. Ongoing professionalization of pastoral care will help to reduce this discrepancy.
Publisher: Cambridge University Press (CUP)
Date: 18-03-2022
DOI: 10.1017/S1478951522000244
Abstract: Spiritual care is a component of quality palliative care, but healthcare providers have reported lack of training as a barrier to its provision. This paper describes the evaluation of the Interprofessional Spiritual Care Educational Curriculum (ISPEC) © which is a six-module evidence-based curriculum developed for teaching interprofessional spiritual care based on a generalist-specialist model of spiritual care. The course was run online in 2020 and attended by 20 healthcare workers who were invited to join the evaluation. Questionnaires were completed by participants before the training program (baseline), immediately after the training (post), and 3 months following the end of the program (follow-up). After the follow-up questionnaires, participants were invited to join a Focus Group to expand on their responses. Descriptive and exploratory statistical analysis was performed on quantitative data, and qualitative data was subjected to Thematic Analysis. Exploratory data analysis showed that self-reported competence, confidence, and comfort in providing spiritual care significantly improved following training ( p = 0.002) and were maintained over time ( p = 0.034). In qualitative analysis, the main themes were: (1) overwhelmed by content (2) the importance of practical training (3) spiritual care is for everyone (4) spiritual care should come from the heart (5) training needs to be inclusive and (6) spirituality is culturally specific. This article describes an evaluation of the ISPEC © spiritual care training course administered to an Australian healthcare cohort using an online format. These preliminary findings suggest that the ISPEC © program is effective in improving the ability of healthcare professionals to provide spiritual care. More work is needed to improve the cultural relevance of the program in Australia.
Publisher: Springer Science and Business Media LLC
Date: 03-08-2022
DOI: 10.1007/S10943-022-01616-3
Abstract: While patients value engagement concerning their spirituality as a part of holistic healthcare, there is little evidence regarding the preferred way to engage in discussions about spirituality. This study investigated inpatient preferences regarding how they would like spirituality to be raised in the hospital setting. A cross-sectional survey was conducted with inpatients at six hospitals in Sydney, Australia ( n = 897), with a subset invited to participate in qualitative interviews ( n = 41). There was high approval for all proposed spiritual history prompts (94.0–99.8%). In interviews, the context dictated the appropriateness of discussions. Findings indicated a high level of patient acceptability for discussing spirituality in healthcare. Further research and more detailed analysis is required and proposed to be undertaken.
Publisher: Elsevier BV
Date: 11-2015
DOI: 10.1016/J.PEC.2015.04.017
Abstract: The aim of this systematic literature review was to ascertain the patient perspective regarding the role of the doctor in the discussion of spirituality. We conducted a systematic search in ten databases from inception to January 2015. Eligible papers reported on original research including patient reports of discussion of spirituality in a medical consultation. Papers were separated into qualitative and quantitative for the purposes of analysis and quality appraisal with QualSyst. Papers were merged for the final synthesis. 54 studies comprising 12,327 patients were included. In the majority of studies over half the s le thought it was appropriate for the doctor to enquire about spiritual needs in at least some circumstances (range 2.1-100%, median 70.5%), but patient preferences were not straightforward. While a majority of patients express interest in discussion of religion and spirituality in medical consultations, there is a mismatch in perception between patients and doctors regarding what constitutes this discussion and therefore whether it has taken place. This review demonstrated that many patients have a strong interest in discussing spirituality in the medical consultation. Doctors should endeavor to identify which patients would welcome such conversations.
Publisher: Springer Science and Business Media LLC
Date: 31-07-2019
Publisher: BMJ
Date: 24-01-2020
DOI: 10.1136/JMEDGENET-2019-106410
Abstract: Little is known about knowledge of, and attitudes towards, genome sequencing (GS) among in iduals with a personal history of cancer who decide to undergo GS. This qualitative study aimed to investigate baseline knowledge and attitudes among in iduals previously diagnosed with a cancer of likely genetic origin who have consented to GS. Semistructured interviews were conducted with purposively selected participants (n=20) from the longitudinal Psychosocial Issues in Genomic Oncology study, within a month of consenting to GS and prior to receiving any results. Participants were adults with a cancer of likely genetic aetiology who are undertaking GS as part of a larger genetic study. Analysis identified three main themes: limited understanding of genomics multifactorial motivation and complex decision making. While motivations such as obtaining health information about self and family appear to be the main drivers for undertaking GS, these motivations are sometimes based on limited knowledge of the accuracy and utility of GS, creating unrealistic expectations. This in turn can prolong the deliberation process and lead to ongoing decisional conflict. Understanding the degree and nature of patient understanding of GS, as well as their attitudes and decision-making processes, will enable healthcare professionals to better manage patient expectations and appropriately engage and support patients to make an informed decision when pursuing GS.
Publisher: Elsevier BV
Date: 05-2021
Publisher: Cambridge University Press (CUP)
Date: 03-11-2016
DOI: 10.1017/S1478951515001236
Abstract: Spiritual history taking by physicians is recommended as part of palliative care. Nevertheless, very few studies have explored the way that experienced physicians undertake this task. Using grounded theory, semistructured interviews were conducted with 23 physicians who had experience in caring for advanced cancer patients. They were asked to describe the way they discuss spirituality with their patients. We have described a delicate, skilled, tailored process whereby physicians create a space in which patients feel safe enough to discuss intimate topics. Six themes were identified: (1) developing the self: physicians describe the need to understand and be secure in one's own spirituality and be comfortable with one's own mortality before being able to discuss spirituality (2) developing one's attitude: awareness of the importance of spirituality in the life of a patient, and the need to respect each patient's beliefs is a prerequisite (3) experienced physicians wait for the patient to give them an indication that they are ready to discuss spiritual issues and follow their lead (4) what makes it easier: spiritual discussion is easier when doctor and patient share spiritual and cultural backgrounds, and the patient needs to be physically comfortable and willing to talk (5) what makes it harder: experienced physicians know that they will find it difficult to discuss spirituality when they are rushed and when they identify too closely with a patient's struggles and (6) an important and effective intervention: exploration of patient spirituality improves care and enhances coping. A delicate, skilled, tailored process has been described whereby doctors endeavor to create a space in which patients feel sufficiently safe to discuss intimate topics.
Publisher: Oxford University Press (OUP)
Date: 2019
Abstract: How do Christian religious beliefs affect attitudes to ART? Attitudes to ART depend on the religiosity of the respondent, and although the majority of those that had successfully used ART were positive or moderately positive in their views, the acceptability of procedures fell when damage to the marriage relationship or the embryo was a potential outcome. Religion can impact views on ART. Sanctity of marriage and sanctity of the embryo are major concerns for some Christians, but details are unclear. A cross-sectional online survey was used to collect data from 1587 participants over a 3-month period in 2013, of which 1334 were of the Christian faith and included in this study. Descriptive statistics were reported for in idual ARTs, and a general score of all ART approval was calculated. A multivariable linear and logistic regression was conducted on general approval for ART to identify predictors of ART approval. Indicators of religiosity (religious meeting attendance and Bible reading frequency) showed that this was a highly religious s le. We found that in this cohort of English-speaking, well-educated, practising and mainly Protestant Christians 164 (12.3%) of those had personal experience of ART. Most participants that had successfully used ART were positive or moderately positive in their views. Throughout the cohort, procedures were less acceptable if there was a perception that the marriage relationship or the life of the embryo was threatened: including donated gametes (28.7–29.1% approval), surrogacy (22.7–33.1% approval), and PGD (1.0–23.8% approval). A multivariable analysis of the ART approval score found that it was higher among those with Protestant compared with Catholic/Orthodox faith (P 0.001 mean score difference, 5.06 95% CI 4.36–5.81) and those who believe life begins after fertilisation (P 0.001 mean score difference, 4.86 95% CI 4.14–5.57). Approval was also higher, but to a lesser extent, in women than men (P = 0.008 mean score difference, 0.73 95% CI 0.18–1.28), and those with lower religiosity (P 0.001). The area raising most indecision for this cohort was disposal of excess embryos. This s le includes an uneven geographical spread of respondents and restriction to English-speaking participants. Different views may be expressed by a different religious cohort. Use of an online survey platform means that a bias towards those with computers (consistent with education levels of this cohort) could exist. Use of this platform also makes it impossible to know the response rate, and the veracity of responses cannot be verified. However, despite these limitations we believe this survey gives us insight into the reservations held among a certain population of Christians regarding the use of reproductive technology. Our findings highlight the need for ART clinicians to consider the influence of patient spiritual beliefs on therapeutic options and provide detailed information that will allow them to be accommodated. Practices such as widening the options for collecting semen and limiting the number of embryos created through IVF so as to reduce or eliminate excess embryos may be helpful for these patients. This study was supported by a grant from The Center for Bioethics & Human Dignity in Deerfield, Illinois, USA. The authors have no conflicts of interest to declare. N/A
Publisher: Springer Science and Business Media LLC
Date: 16-12-2018
DOI: 10.1007/S00520-017-4017-9
Abstract: In the palliative oncology setting, genetic assessment may not impact on the patient's management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are addressed in this setting. This review aims to examine current practices, identify practice barriers and determine the genetic information and support needs of patients, family members and health providers. Key databases were systematically searched to identify both quantitative and qualitative studies that addressed these aims. Data was extracted and coded using thematic analysis. Eight studies were included for review. Suboptimal genetic practices were identified, with lack of knowledge and poor confidence amongst providers reported as barriers in both qualitative and quantitative studies. Providers expressed concern about the emotional impact of initiating these discussions late in the disease trajectory however, qualitative interviews amongst palliative patients suggested there may be emotional benefits. All lines of evidence suggest that genetics is currently missing from the palliative agenda, signifying lost opportunities for mutation detection, genetic counselling and appropriate risk management for surviving relatives. There is an urgent need for interventions to improve provider knowledge and awareness of genetic referral pathways and for research into the genetic information and support needs of palliative care patients.
Publisher: Springer Science and Business Media LLC
Date: 24-07-2023
DOI: 10.1007/S00520-023-07916-Y
Abstract: As COVID-19 spread across the globe, cancer services were required to rapidly pivot to minimise risks without compromising outcomes for patients or staff. The aim of this study was to document changes to oncology services as a result of COVID-19 from the perspectives of both providers and receivers of care during the initial phase of the pandemic. Participants were recruited between June and December 2020 through an email invitation via professional or consumer organisations, two hospital-based oncology services and snowballing. Semi-structured interviews focused on health service changes and their impacts, which were then analysed by thematic analysis. Thirty-two patients, 16 carers and 29 health professionals were recruited. Fifteen patients ( n = 47%) had localised disease, and 19 ( n = 59%) were currently receiving treatment. Oncology staff included oncologists, palliative care physicians, nurses, allied health and psychosocial practitioners. Four themes arose from the data: safety, increased stress and burnout, communication challenges and quality of cancer care. There is an ongoing need for cancer-specific information from a single, trusted source to inform medical practitioners and patients/carers. More data are required to inform evidence-based guidelines for cancer care during future pandemics. All stakeholders require ongoing support to avoid stress and burnout.
Publisher: Wiley
Date: 14-07-2021
DOI: 10.1002/PON.5764
Abstract: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates. Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later). High stable ( N = 52 7.3%) and low/moderate stable ( N = 56 7.8%) FCP patterns over time typified the largest participant groups ( N = 721). Those with an immediately actionable variant versus a non‐actionable variant ( p = 0.045), with higher FCP ( p 0.001), and lower Functional Assessment of Chronic Illness Therapy—Spiritual Well‐being (FACIT‐Sp) scores ( p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 ( p 0.001) and at T1 ( p 0.001), lower FACIT‐Sp scores at T1 ( p = 0.001), lower education ( p = 0.031) and female gender ( p = 0.027) had higher FCP at T2. Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease.
Publisher: Wiley
Date: 11-08-2020
DOI: 10.1002/PON.5446
Publisher: Springer International Publishing
Date: 24-11-2018
Publisher: Oxford University Press (OUP)
Date: 18-01-2017
Publisher: Springer Science and Business Media LLC
Date: 15-01-2020
DOI: 10.1186/S12904-019-0508-4
Abstract: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care stakeholders, leaders and decision makers responsible for training and education as well as national and local curricula development groups. Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.
Publisher: Springer Science and Business Media LLC
Date: 25-05-2021
Publisher: Wiley
Date: 10-2021
DOI: 10.1111/IMJ.15377
Abstract: There has been widespread public and political interest in Euthanasia and Physician‐Assisted Suicide (EPAS) in recent years. Polling in Australia and New Zealand has generally shown a majority of people support some form of legal EPAS however, the level of support varies between polls. To explore whether public support for and opposition to EPAS as measured in historic Australian and New Zealand polls has been influenced by the wording of survey questions. Australian and New Zealand random‐s le post‐1995 EPAS poll questions asked of the general public were identified and subjected to content analysis. In idual phrases and words were considered in terms of their favourability towards or unfavourability against EPAS and each poll question was assigned a net favourability score. Variation of support for EPAS based on year, location and favourability of language was analysed by various statistical methods. Mean public support for EPAS in Australia and New Zealand between 1995 and the present was 70.2% with support ranging between 47 and 85%. Support did not vary by location and has remained unchanged over time. However, support was positively associated with increasing levels of favourable wording, accounting for over 20% variation in mean support. Allusions to hopelessness had an especially strong effect on increasing support for EPAS. Use of emotive phrases and language is associated with influencing attitudes to EPAS in Australia and New Zealand. Therefore, caution should be exercised when interpreting public support for EPAS based on in idual polls.
Publisher: Wiley
Date: 26-11-2019
DOI: 10.1111/CGE.13664
Abstract: Implementation of any new medical test, including germline genome sequencing (GS) to inform cancer risk, should take place only when a test is effective, ethically justifiable and acceptable to a population. Little empirical evidence exists on patient views regarding GS for cancer risk. The aim of this study was to elicit opinions on who should be offered GS and who should pay for it. Participants with a probable genetic basis for their cancer (n = 335) and blood relatives (n = 199) were recruited to undergo GS and invited to complete questionnaires at baseline. A subset (n = 40) also participated in qualitative interviews about their views regarding access to GS to detect cancer risk. Our response rate was 92% for questionnaires and 100% for interviews. Participants expressed high enthusiasm overall for access to GS for those with a family history of cancer and anyone who requested testing, but enthusiasm was lower for universal access, if opting out was possible and finances not an issue. Rationales for these views reflected maximising the sound use of resources. Challenges to introducing community screening via GS to limit cancer burden were raised, including the current limits of science and in idual ability to cope with uncertain results. Participants undergoing GS supported cancer risk testing for those with a family history of cancer but were concerned about the challenges of designing and implementing a population-based GS cancer-screening program.
Publisher: Springer Science and Business Media LLC
Date: 05-04-2018
Publisher: Elsevier BV
Date: 07-2022
Publisher: Cambridge University Press (CUP)
Date: 12-07-2023
DOI: 10.1017/S1478951523000974
Abstract: Definitions of spirituality abound however, the importance of context and need for better understanding within health-care practice has been emphasized. In particular, the understanding of spirituality for nurses has been shown to have an impact both professionally and personally. This study used a conceptual analysis to explore the understanding of spirituality by German-speaking nurses in an educational context. A total of 91 nursing students (83.5% female, 16.5% male) took the spiritual care course between January 2022 and January 2023. The majority of participants ( n = 63, 69.6%) were in the 26- to 40-year age bracket, 50 (54.9%) identified themselves as Christian, 15 (16.5%) chose other, 12 (13.2%) atheist, 6 (6.6%) humanist or agnostic, and 2 (2.2%) Buddhist. A conceptual analysis of nursing students’ written responses to the question “What is spirituality to me?” was conducted. Two overarching categories were identified. The first category was titled “What aspects or characters are linked to spirituality?” and included 5 subcategories: people, life, experience, a sense of security, and capacity. The second category was titled “How is spirituality experienced, practiced and lived?” and included 5 subcategories: sometimes just a hug, to align one’s life with that purpose, to be content with myself, conscious attention to oneself, and demarcation from religion. These subcategories were interrelated to one another. These findings have implications for how spirituality is introduced in nursing education.
Publisher: Elsevier BV
Date: 09-2020
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 10-2022
Publisher: Elsevier BV
Date: 06-2021
Publisher: Wiley
Date: 03-07-2021
DOI: 10.1002/JGC4.1455
Abstract: Genomic Sequencing (GS) to identify high cancer risk will soon enter clinical practice at significant cost to the health system. This study aimed to quantify perceived value of GS to Australian cancer patients and their first‐degree relatives participating in a genomic sequencing study, and factors associated with value. Participants were recruited upon consent to the genomics study. Eligible participants (with cancer of likely genetic etiology, or a first‐degree relative) completed a questionnaire prior to GS. Willingness to pay was assessed via hypothetical trade‐off scenarios of actionable result return rates of 1%, 10%, 20%, 30%, 40% or 50%. Of 348 probands and 213 relatives (92% and 93% response rate), 81% would consistently have GS for as little as a 1% actionable return rate. Participants would pay a median of $1,000 for return rates of at least 20% (probands) or 30% (relatives), and $300 for lower return rates. Probands with common cancers and negative attitudes to uncertainty were more likely to have GS those with higher education were more willing to pay $1,000 and $3,000 for lower return rates. This study found high interest in, but lower willingness to pay for GS in cancer patients and their first‐degree relatives, possibly due to inability to pay. Further research is needed to improve our understanding of how in iduals in different risk circumstances, trade‐off the risks, harms, and benefits of GS.
Publisher: Cambridge University Press (CUP)
Date: 07-12-2022
DOI: 10.1017/S1478951521001851
Abstract: The aim was to identify determinants of nurse spiritual/existential care practices toward end-of-life patients. Nurses can play a significant role in providing spiritual/existential care, but they actually provide this care less frequently than desired by patients. A systematic search was performed for peer-reviewed articles that reported factors that influenced nurses’ spiritual/existential care practices toward adult end-of-life patients. The review identified 42 studies and included the views of 4,712 nurses across a range of hospital and community settings. The most frequently reported factors/domains that influenced nurse practice were patient-related social influence, skills, social rofessional role and identity, intentions and goals, and environmental context and resources. A range of personal, organizational, and patient-related factors influence nurse provision of spiritual/existential care to end-of-life patients. This complete list of factors can be used to gauge a unit's conduciveness to nurse provision of spiritual/existential care and can be used as inputs to nurse competency frameworks.
Publisher: The Royal Australian College of General Practitioners
Date: 04-2020
Publisher: AMPCo
Date: 27-08-2018
DOI: 10.5694/MJA18.00227
Abstract: Precision medicine aims to link molecular targets in tumours with corresponding therapies, particularly for patients with rare cancers. Innovative approaches are needed to translate molecular opportunities into clinical care. The Cancer Molecular Screening and Therapeutics (MoST) program employs a molecular screening platform to identify molecular changes of therapeutic relevance (actionable changes) and a master protocol for multiple, parallel signal-seeking clinical substudies, focused on therapies for patients with rare and neglected cancers. Methods and analysis: Archival pathology laboratory s les from patients with treatment-refractory advanced solid cancer of any histologic type undergo molecular tumour profiling. Following review by a Molecular Tumour Board, eligible patients are offered treatment in therapeutic substudies. This novel master protocol allows expedited addition of in idual substudies at least 12 open label, single arm, signal-seeking substudies during the initial 4 years of MoST are planned. The primary objectives are to identify signals of efficacy for developing biomarker-driven therapies and biomarkers that more accurately predict response to therapy, as well as to evaluate the MoST design. Ethics approval: The program has been approved by the St Vincent's Hospital Sydney Human Research Ethics Committee (reference, HREC/16/SVH/23). Dissemination of results: A report summarising and interpreting collected study data will be published. Our findings will be presented at national and international conferences and scientific meetings, and published in peer-reviewed journals. Australia New Zealand Clinical Trials Registry: ACTRN12616000908437 (8 July 2016).
Publisher: Springer Science and Business Media LLC
Date: 23-04-2018
Publisher: Wiley
Date: 10-11-2021
DOI: 10.1002/AJMG.A.62563
Abstract: This study assessed the psychological predictors of preferences for return of comprehensive tumor genomic profiling (CTGP) results in patients with advanced cancers, enrolled in the Molecular Screening and Therapeutics Program. Patients completed a questionnaire prior to undergoing CTGP. Of the 1434 who completed a questionnaire, 96% would like to receive results that can guide treatment for their cancer, and preference for receiving this type of result was associated with lower tolerance of uncertainty. Sixty‐four percent would like to receive results that cannot guide treatment , and lower tolerance of uncertainty, self‐efficacy, and perceived importance were associated with this preference. Fifty‐nine percent would like to receive variants of unknown significance , which was associated with lower tolerance of uncertainty, higher self‐efficacy, and perceived importance. Eighty‐six percent wanted to receive germline results that could inform family risk . This was associated with higher self‐efficacy, perceived importance, and perceived susceptibility. Although most patients wanted to receive all types of results, given the differing patient preferences regarding the return of results depending on the utility of the different types of results, it appears critical to safeguard patient understanding of result utility to achieve informed patient choices. This should be accompanied by appropriate consent processes.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2021
Publisher: Springer Science and Business Media LLC
Date: 29-01-2022
DOI: 10.1007/S10943-022-01498-5
Abstract: Euthanasia and physician-assisted suicide (EPAS) are important contemporary societal issues and religious faiths offer valuable insights into any discussion on this topic. This paper explores perspectives on EPAS of the four major world religions, Christianity, Islam, Hinduism and Buddhism, through analysis of their primary texts. A literature search of the American Theological Library Association database revealed 41 relevant secondary texts from which pertinent primary texts were extracted and exegeted. These texts demonstrate an opposition to EPAS based on themes common to all four religions: an external locus of morality and the personal hope for a better future after death that transcends current suffering. Given that these religions play a significant role in the lives of billions of adherents worldwide, it is important that lawmakers consider these views along with conscientious objection in jurisdictions where legal EPAS occurs. This will not only allow healthcare professionals and institutions opposed to EPAS to avoid engagement, but also provide options for members of the public who prefer an EPAS-free treatment environment.
Publisher: Informa UK Limited
Date: 05-07-2022
DOI: 10.1080/08854726.2022.2095779
Abstract: The value of spiritual care training for all staff working in health and aged care has been demonstrated. This study investigated how spiritual care specialists (SCSs) perceive their role in delivering spiritual care education to other staff. Fourteen SCSs participated in three online focus groups. Two key themes were identified: First, SCSs build upon existing capacity of staff by: (i) recognising existing strengths and capabilities (ii) using relevant stories (iii) using language which makes spiritual care accessible (iv) making training relevant and practical (v) tapping into staff vocation or calling and (vi) building awareness of one's own spirituality. Second, SCSs assist staff to draw upon SCS expertise by establishing a trusting relationship and developing staff awareness of the SCS role. The SCS's role in delivering spiritual care education is an important one, and further consideration regarding how to support them in this role is warranted.
Publisher: Springer Science and Business Media LLC
Date: 11-09-2018
Publisher: Wiley
Date: 20-10-2023
DOI: 10.1111/JAN.15908
Publisher: Frontiers Media SA
Date: 22-04-2021
DOI: 10.3389/FPSYG.2021.647502
Abstract: There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up (prior to receiving results). Participants ( N = 353) had negative attitudes towards uncertainty ( M = 4.03, SD 0.68) at baseline, and low levels of uncertainty at three ( M = 8.23, SD 7.37) and 12 months ( M = 7.95, SD 7.64). Uncertainty about genome sequencing did not change significantly over time [ t (210) = 0.660, p = 0.510]. Greater perceived susceptibility for cancer [ r (348) = 0.14, p & 0 .01], fear of cancer recurrence [ r (348) = 0.19, p & 0 .01], perceived importance of genome sequencing [ r (350) = 0.24, p & 0 .01], intention to change behavior if a gene variant indicating risk is found [ r (349) = 0.29, p & 0 .01], perceived ability to cope with results [ r (349) = 0.36, p & 0 .01], and satisfaction with decision to have genome sequencing [ r (350) = 0.52, p & 0 .01] were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses [B = −2.364 [−4.238, −0.491], p = 0.014], lower perceived ability to cope with results [B = −0.1.881 [−3.403, −0.359], p = 0.016] at baseline, greater anxiety about genome sequencing (avoidance) [B = 0.347 [0.148, 0.546], p = 0.0012] at 3 months, and greater perceived uncertainty about genome sequencing [B = 0.494 [0.267, 0.721] p = 0.000] at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety (avoidance) about genome sequencing at 12 months [B = 0.291 [0.072, 0.509], p = 0.009]. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity.
Publisher: Elsevier BV
Date: 02-2022
DOI: 10.1016/J.PEC.2021.05.018
Abstract: To understand advanced cancer patients' experience of uncertainty when receiving comprehensive tumor genomic profiling (CTGP) results, and their perceptions of how healthcare provider (HCP) communication impacts uncertainty. Thirty-seven semi-structured interviews with advanced cancer patients were conducted within two weeks of patients receiving CTGP results. Transcripts were thematically analyzed, using an inductive approach. We identified three themes that illustrate patient experience of uncertainties when receiving CTGP results: 1. Type and degree of uncertainty fluctuates along with changing illness circumstances and the nature of the CTGP results 2. HCPs' co-ordination of care and communication shapes uncertainty, with immediate, clearer and simpler information promoting certainty and 3. Patients felt that communicating results to reduce relatives' uncertainty is important, with patients choosing the time and process for achieving this and desiring HCPs support. Oncology patients are confronted with an array of uncertainties. Clear, simple communication from HCPs about results and their implications, and support to manage uncertainty, will be of benefit. If CTGP is to become routine clinical practice, clear communication will be crucial in reducing uncertainty. Awareness of potential uncertainties experienced by patients when receiving results, will assist HCPs to address uncertainties, reduce uncertainty where possible, and offer targeted support to patients struggling with uncertainty.
Publisher: Royal College of General Practitioners
Date: 19-02-2019
DOI: 10.3399/BJGPOPEN18X101633
Abstract: As part of a pilot randomised controlled trial examining the impact of personal melanoma genomic risk information on behavioural and psychosocial outcomes, GPs were sent a booklet containing their patient’s genomic risk of melanoma. Using this booklet as an ex le of genomic risk information that might be offered on a population-level in the future, this study explored GP attitudes towards communicating genomic risk information and resources needed to support this process. Semi-structured interviews were conducted with 22 Australian GPs. The interviews were recorded and transcribed, and data were analysed thematically. GPs in this s le believed that communicating genomic risk may become a responsibility within primary care and they recommended a shared decisionmaking approach to guide the testing process. Factors were identified that may influence how and when GPs communicate genomic risk information. GPs view genomics-based risk as one of many disease risk factors and feel that this type of information could be applied in practice in the context of overall risk assessment for diseases for which prevention and early detection strategies are available. They believe it is important to ensure that patients understand their genomic risk and do not experience long-term adverse psychological responses. GPs desire clinical practice guidelines that specify recommendations for genomic risk assessment and patient management, point-of-care resources, and risk prediction tools that include genomic and traditional risk factors. These findings will inform the development of resources for preparing GPs to manage and implement genomic risk information in practice.
Publisher: Springer Science and Business Media LLC
Date: 04-02-2023
DOI: 10.1007/S10943-023-01752-4
Abstract: The aim of this study was to explore Australian chaplains’ views of spirituality. Semi-structured online interviews were conducted with 16 participants. Participants relied heavily on metaphors and analogies to describe spirituality. Four inter-related themes were identified through reflexive thematic analysis: (1) The core of spirituality: spirituality as a source of meaning or belief which leads to connectedness with something greater than oneself (2) A function of spirituality: spirituality empowers people to cope in a crisis, by providing motivation, hope and comfort (3) The experience of spiritual crisis: admission to hospital or residential care can lead to existential struggle and (4) The spiritual practice: of holding space between struggle and growth. Greater understanding of the theoretical basis of their work may allow chaplains to offer more in the therapeutic space.
Publisher: Wiley
Date: 10-06-2022
DOI: 10.1111/CGE.14169
Abstract: It is important to understand how in iduals perceive uncertainties and the consequent impact on their psychological well‐being and health behavior. The Perceptions of Uncertainties in Genome Sequencing (PUGS) scale measures clinical, affective, and evaluative uncertainties about information from sequencing. The PUGS scale has been shown to be valid and reliable among in iduals receiving results about their genomes. This study assessed whether its validity generalized to patients with cancer undergoing tumor sequencing. Exploratory factor analysis (EFA) was conducted on data from the Molecular Screening and Therapeutics Program ( n = 310) to identify a measurement model. Confirmatory factor analysis (CFA) was used to determine the adequacy of the resulting fit. EFA identified the same three‐factor structure reported previously. CFA confirmed that the measurement model yielded a good fit ( χ 2 /df = 3.72, CFI = 0.96, SRMR = 0.05, and RMSEA = 0.09) and satisfied convergent and discriminant validity. These findings provide further evidence of the validity and reliability of the PUGS scale in measuring three types of uncertainty. Continued application will facilitate an evidence‐based approach to intervention and enhance understanding of what it is like to receive results. In turn, this will improve clinical outcomes as undergoing sequencing becomes an increasingly common experience.
Publisher: Elsevier BV
Date: 05-2022
DOI: 10.1016/J.JPAINSYMMAN.2021.12.024
Abstract: Renal Supportive Care Services (RSCS) were introduced in Australia to provide patient-centred care with a focus on better symptom management and improved quality of life in end stage kidney disease (ESKD) patients managed with or without dialysis. While RSCS have demonstrated clinical benefits with reduced length of hospital stay and symptom burden, there is a gap in understanding the experience of patients referred to RSCS. To identify patient attitudes, beliefs, and perspectives on the RSCS. Qualitative interviews were conducted with 20 participants from both dialysis and conservative treatment pathways. Transcripts were then thematically analysed and primary themes identified, which were reviewed with a stakeholder group that included doctors, nurses and allied health staff to provide triangulation. Patients perceived the RSCS as a provider of multidisciplinary, holistic and patient-centred care that, in addition, helped to ensure prognostic awareness and timely end-of-life care planning. This contributed to an overall sense of patient empowerment with healthcare decisions. This study identified three major themes: (1) Expectations of care (2) Experience of care and (3) Understanding patient needs. The study found that RSCS support patient-centred and family-orientated initiatives in decision making and control over healthcare management. This is empowering for patients. Additional patient values, needs and wants from the RSCS were also identified and these could be addressed to improve the patient experience. Our findings support the ongoing use of RSCS to improve the experience of ESKD patients.
Publisher: Wiley
Date: 03-2022
DOI: 10.1002/PON.5908
Abstract: To determine whether the existing Multidimensional Impact of Cancer Risk Assessment (MICRA) scale, which assesses impact of receiving genetic test results on in iduals being assessed for cancer risk, can be successfully adapted to cancer patients experiencing prolonged waiting for results of germline genome sequencing (GS). Patients previously diagnosed with likely hereditary cancer ( n = 250) who were waiting for germline GS results completed questionnaires 3 months after baseline. We adapted the MICRA to measure anxiety associated with waiting for results, and assessed factor structure, internal consistency, test–retest reliability and construct validation. Factor analysis revealed four factors: distress, positive experience, family support and uncertainty. Internal consistency for each sub‐scale was high with the values of Cronbach's alpha for the distress, positive experiences, family support and uncertainty sub‐scales 0.92, 0.88, 0.92 and 0.87, respectively. Test–retest reliability was poor, with intra‐class correlations of 0.53, 0.13, 0.33 and 0.52 for the four factors, respectively. Construct validation showed large correlations between the MICRA distress and uncertainty sub‐scale scores and the Impact of Events score intrusion (0.42 and 0.62, respectively) and IES avoidant thinking sub‐scales (0.40 and 0.58, respectively) but not the Hospital Anxiety and Depression Scale sub‐scales. The adapted MICRA identified test‐related anxiety and uncertainty in a population of cancer patients waiting for germline GS results. Results suggest that the distress and uncertainty sub‐scales of the adapted measure are most useful in this context.
Publisher: Wiley
Date: 18-07-2023
DOI: 10.1111/AJCO.13808
Abstract: The risk of dying from COVID‐19 is higher for those who are older, immune‐compromised, or chronically ill. Vaccines are an effective strategy in reducing mortality and morbidity from COVID‐19. However, for COVID‐19 vaccination programs to reach full potential, vaccines must be taken up by those at greatest risk, such as cancer patients. Understanding the perspectives of all stakeholders involved in cancer patient COVID‐19 vaccine uptake will be critical to ensuring appropriate support, and information is provided to facilitate vaccination. The aim of this research was to explore the longitudinal views of cancer stakeholders regarding COVID‐19 vaccination. Semistructured interviews were conducted with cancer patients ( n = 23), family members ( n = 10), cancer health professionals ( n = 19), and representatives of cancer nongovernment organizations ( n = 7) across Australia 6 and 12 months postrecruitment. Transcripts were thematically analyzed, using an inductive approach. All stakeholder groups expressed mostly positive attitudes toward COVID‐19 vaccination, with the following key themes identified: (1) high motivation—vaccination perceived as offering health protection and hope (2) hesitancy—concern about vaccine hesitancy among the general population, with a minority hesitant themselves (3) confusion and frustration—regarding the vaccine rollout and patient eligibility (4) uncertainty—about vaccination in the context of cancer (5) access to vaccination and (6) desire for expert in idualized advice—on vaccine interaction with cancer treatments. These findings highlight the COVID‐19 vaccine concerns and information needs of cancer stakeholders. Policymakers need to provide clear tailored information regarding vaccine eligibility, accessibility, benefits, and risks to facilitate vaccine uptake.
Publisher: SAGE Publications
Date: 20-04-2015
Abstract: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness. This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients. A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature. MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992–2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritual or existential issues or concerns not leading to suffering. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are reported according to AMSTAR guidelines. The studies represented seven intervention types. Meaning-centred, hope-centred and stress-reduction interventions were found to be effective. Results of both psycho-educational and spiritual interventions in improving spiritual well-being were mixed. Supportive-expressive interventions – with the exception of forgiveness therapy – were not efficacious. There was little or no evidence for the efficacy of creative and healing arts and other assessed interventions such as animal therapy and haptotherapy. This systematic review found that spiritual well-being, meaning, hope and benefit finding can be positively impacted by a variety of treatment modalities.
Publisher: American Medical Association (AMA)
Date: 14-05-2020
Publisher: The Royal Australian College of General Practitioners
Date: 12-2019
Publisher: Cambridge University Press (CUP)
Date: 13-07-2021
DOI: 10.1017/S1478951521001024
Abstract: The aim was to to establish core components of spiritual care training for healthcare professionals in Australia. This study used the Delphi technique to undertake a consensus exercise with spiritual care experts in the field of healthcare. Participant opinion was sought on (i) the most important components of spiritual care training (ii) preferred teaching methods (iii) clinical scenarios to address in spiritual care training and (iv) current spiritual assessment and referral procedures. Of the 107 participants who responded in the first round, 67 (62.6%) were female, 55 (51.4%) worked in pastoral care, and 84 (78.5%) selected Christian as their religious affiliation. The most highly ranked components of spiritual care training were “relationship between health and spirituality,” followed by “definitions of spirituality and spiritual care.” Consensus was not achieved on the item “comparative religions study/alternative spiritual beliefs.” Preferred teaching methods include case studies, group discussion, role-plays and/or simulated learning, videos of personal stories, and self-directed learning. The most highly ranked clinical scenario to be addressed in spiritual care training was “screening for spiritual concerns for any patient or resident.” When asked who should conduct an initial spiritual review with patients, consensus was achieved regarding all members of the healthcare team, with most nominating a chaplain or “whoever the patient feels comfortable with.” It was considered important for spiritual care training to address one's own spirituality and self-care. Consensus was not achieved on which spiritual care assessment tools to incorporate in training. This Delphi study revealed that spiritual care training for Australian healthcare professionals should emphasize the understanding of the role of spirituality and spiritual care in healthcare, include a range of delivery methods, and focus upon the incorporation of spiritual screening. Further work is required to identify how spiritual care screening should be conducted within an Australian healthcare setting.
Publisher: Elsevier BV
Date: 06-2022
DOI: 10.1016/J.EJMG.2022.104516
Abstract: This study assessed the psychological predictors of attitudes toward the return of germline genomic sequencing results in cancer patients and their biological relatives with a likely genetic basis for their cancer diagnosis, who completed a questionnaire prior to undergoing genomic sequencing. Of 602 probands and relatives, 94% of probands and 89% of relatives thought people would like to be informed about single-gene conditions for which there is prevention or treatment. Amongst relatives, this view was associated with higher perceived susceptibility and self-efficacy. Probands (66%) and relatives (59%) thought people would be interested in learning about single-gene conditions for which there is no prevention or treatment. Amongst probands, this view was associated with lower tolerance of uncertainty and amongst relatives with higher self-efficacy. Probands (92%) and relatives (90%) thought people would like to be informed about polygenic conditions that can have a major impact on health. Amongst probands this view was associated with lower perceived susceptibility of cancer recurrence, and amongst relatives, with higher perceived susceptibility and self-efficacy. Probands (86%) and relatives (86%) thought that people would like to be informed about polygenic conditions that can have a lower impact on health, and this view was associated with a lower perceived susceptibility of recurrence amongst probands. In conclusion, these findings show that in iduals' attitudes about the return of results depend on the perceived utility of different types of tests. Therefore, in iduals need to gain a clear understanding of test utility, and appropriate consent processes are required to achieve informed choices.
Publisher: Springer Science and Business Media LLC
Date: 17-05-2023
Publisher: SAGE Publications
Date: 21-12-2021
DOI: 10.1177/15423050211067724
Abstract: Chaplain leadership may have played a pivotal role in shaping chaplains’ roles in health care amidst the COVID-19 pandemic. We convened an international expert panel to identify expert perception on key chaplain leadership factors. Six leadership themes of professional confidence, engaging and trust-building with executives, decision-making, innovation and creativity, building integrative and trusting connections with colleagues, and promoting cultural competencies emerged as central to determining chaplains’ integration, perceived value, and contributions during the pandemic.
Publisher: Springer Science and Business Media LLC
Date: 21-06-2023
DOI: 10.1038/S41431-023-01409-6
Abstract: Genetic counselling and testing have utility for people with palliative care needs and their families. However, genetic and palliative care health professionals have described difficulties initiating palliative-genetic discussions. Between March and July 2022, we received n = 73 surveys (6% response rate) from genetic and palliative care health professionals in Australia and New Zealand that assessed and compared barriers and facilitators. The main perceived barrier to both groups was palliative care health professionals’ lack of genetic knowledge (44%). Most palliative care health professionals were ‘not at all confident’ performing several activities, including discussing DNA banking (52%) and knowing their legal responsibilities when sharing genetic information (58%). The most frequently selected facilitator for genetic health professionals was fostering close relationships with palliative care health professionals (52%), while palliative care health professionals indicated a genetic referral template (51%) would be of assistance. Almost all participants agreed genetic discussions do not undermine the central ethos of palliative care (87%). Fewer palliative care health professionals considered themselves well situated to have genetic discussions with a palliative patient’s family compared to genetic health professionals ( p = 0.014). Our results suggest that genetic and palliative care health professionals support integrating genetics into palliative care, although refinement of the palliative care health professionals’ role in this process is required. We have identified intervention targets to overcome barriers related to knowledge and confidence, which ought to be integrated into future interventions designed to support health professionals deliver the benefits of genetic information to people with palliative care needs and their families.
Publisher: AME Publishing Company
Date: 12-2022
DOI: 10.21037/APM-22-1199
Publisher: Springer Science and Business Media LLC
Date: 21-01-2022
DOI: 10.1007/S10943-021-01477-2
Abstract: Chaplains have been embedded in military settings for over a millennium. In recent years however, the decline in spiritual/religious (S/R) affiliation of military personnel across Western cultures has led to some commentators questioning the utilization of religious chaplains by defence personnel. This scoping review maps the literature on S/R and non-S/R factors that influence utilizing military chaplains-with a particular emphasis on the Australian military context. A systematic scoping review of tertiary literature databases using Arksey and O'Malley (2003) and Joanna Briggs Institute methodologies (JBI, 2021), revealed a total of 33 articles meeting the inclusion criteria. Results fell into three broad categories: (i) how personal religious views influence utilization of military chaplaincy, (ii) barriers and enablers to personnel utilizing military chaplains, and (iii) the impact of chaplaincy. Despite the current reduction in religiosity in Western society, findings from this scoping review suggest there is little evidence that low religiosity among military personnel forms a significant barrier to utilizing chaplaincy services. To the contrary, the literature revealed that chaplains provide trusted, confidential, and holistic support for military personnel that if diminished or compromised would leave a substantial gap in staff well-being services.
Publisher: Elsevier BV
Date: 10-2022
DOI: 10.1016/J.PEC.2022.06.009
Abstract: The Knowledge of Genome Sequencing (KOGS) questionnaire was recently developed to measure knowledge of genomic sequencing (GS), with preliminary psychometric data supporting its reliability and validity. The aim of this study was to test the reliability and validity of the KOGS in a larger s le, and to confirm its utility in a cancer setting. The Genetic Cancer Risk in the Young (RisC) study recruits participants with a personal history of cancer, to investigate heritable cancer causes and future cancer risk using germline GS. Participants (n = 261) in a psychosocial substudy of RisC completed a questionnaire after consent to RisC but before GS, including the KOGS, the Intolerance of Uncertainty Scale, the Chew health literacy scale and items assessing demographic and disease variables. Confirmatory factor analysis (CFA), Cronbach alpha and correlational analyses were undertaken. The CFA testing a single-factor model yielded a good model fit, χ2/df = 2.43, comparative fit index (CFI) = 0.97, root mean square error of approximation (RMSEA) = 0.07 and weighted mean root square (WRMR) = 1.03. Factor loadings of all items were above 0.60 and ranged between.66 and.93. The single factor score demonstrated excellent internal consistency (α = 0.82). KOGS scores were significantly associated with health literacy (r = 0.23, p < .001), having a university education [t(258) = -4.53, p < .001] and having a medical or science background [t(259) = -3.52, p < .001] but not with speaking a language other than English at home, time since diagnosis, previous genetic counselling/testing or intolerance of uncertainty. This study confirmed a single-factor structure for the KOGS, and its reliability and validity in a cancer population. Associations with measures of health literacy and education were significant and positive as expected, supporting the KOG's construct validity. Previous genetic counselling may not be sufficient to provide specific knowledge of GS.
Publisher: MDPI AG
Date: 28-02-2023
DOI: 10.3390/REL14030320
Abstract: Palliative care has always included spiritual care, but the provision and inclusion of spiritual care within and across palliative care services internationally is sub-optimal. In this summary overview, we address understandings and meanings of spirituality and related terms, both generally and in the context of healthcare, and outline the importance of spiritual well-being and spiritual care at the end of life. We summarise what spiritual care involves, its benefits for palliative care patients and their families, and consider how its provision might be helped or hindered. There is currently a limited evidence base for the efficacy of interventions including spiritual and/or religious care, and large-scale studies in particular are lacking. However, those mostly small-scale and/or qualitative studies which have been conducted to date show that addressing the spiritual needs of patients in palliative care is associated with many positive outcomes for both patients and their relatives. More research in this area is necessary to develop and enhance the evidence base, and optimal provision of spiritual care requires that providers explicitly recognise the need for such care, including through providing training and support for staff.
Publisher: Springer Science and Business Media LLC
Date: 28-03-2023
DOI: 10.1007/S10943-023-01791-X
Abstract: This article considers the contribution of faith-based chaplains who provide holistic pastoral and spiritual care within critical environments such as the military, first responders, and hospitals. The contribution of faith-based chaplains can sometimes be taken for granted or not properly understood, particularly in some Western countries which are currently experiencing a decline in religiosity. Following on from a previous paper regarding chaplaincy utilization (Layson et al. 2022), this article presents an alternative argument to the secularist-humanist perspective by noting five ways by which the faith based chaplaincy model provides best practice service and builds a capability advantage for organizations that engage faith-based chaplaincy services. The first section discusses faith-based chaplaincy and organizational holistic care the second section considers the role of faith-based chaplains—much of which is largely unknown and poorly appreciated the third section considers the unique capability of faith-based chaplains to provide spiritual and religious care to those of faith and for those of none the fourth section explores how faith-based chaplains can leverage the positive impact of religious organizations to provide additional low-cost resources for other organizations and their staff and lastly, the operational advantage of faith-based chaplains on the world stage is considered, particularly in light of culturally and linguistically erse populations to whom religiosity is increasingly important.
Publisher: Elsevier BV
Date: 09-2021
Publisher: Springer Science and Business Media LLC
Date: 11-03-2022
DOI: 10.1038/S41431-022-01069-Y
Abstract: Germline genome sequencing (GS) holds great promise for cancer prevention by identifying cancer risk and guiding prevention strategies, however research evidence is mixed regarding patient preferences for receiving GS results. The aim of this study was to discern preferences for return of results by cancer patients who have actually undergone GS. We conducted a mixed methods study with a cohort of cancer probands ( n = 335) and their genetic relatives ( n = 199) undergoing GS in a research setting. Both groups completed surveys when giving consent. A subset of participants ( n = 40) completed semi-structured interviews. A significantly higher percentage of probands thought people would like to be informed about genetic conditions for which there is prevention or treatment that can change cancer risk compared to conditions for which there is no prevention or treatment (93% [311] versus 65% [216] p 0.001). Similar results were obtained for relatives (91% [180] versus 61% [121] p 0.001). Themes identified in the analysis of interviews were: (1) Recognised benefits of GS, (2) Balancing benefits with risks, (3) Uncertain results are perceived as unhelpful and (4) Competing obligations. While utility was an important discriminator in what was seen as valuable for this cohort, there was a variety of responses. In view of varied participant preferences regarding return of results, it is important to ensure patient understanding of test validity and identify in idual choices at the time of consent to GS. The nature and value of the information, and a contextual understanding of researcher obligations should guide result return.
Publisher: Cambridge University Press (CUP)
Date: 12-07-2023
DOI: 10.1017/S1478951523000676
Abstract: Despite there being many models for how spiritual care should be provided, the way nurses actually provide spiritual care often differs from these models. Based on the premise that the way a person enacts their work role is related to how they understand that role, this study aims to describe the qualitatively different ways that nurses understand their spiritual care role. A convenience s le of 66 American nurses completed an anonymous, online questionnaire about what spiritual care means for them and what they generally do to provide spiritual care. Their responses were analyzed phenomenographically. Four qualitatively different ways of understanding emerged: active management of the patient’s experience, responsive facilitation of patient’s wishes, accompaniment on the patient’s dying journey, and empowering co-action with the patient. Each understanding was found to demonstrate a specific combination of 5 attributes that described the spiritual care role: nurse directivity, the cues used for spiritual assessment, and the nurse’s perception of intimacy, the patient, and the task. The findings of this study may explain why nurses vary in their spiritual care role and can be used to assess and develop competence in spiritual care.
Publisher: Springer Science and Business Media LLC
Date: 30-04-2018
Publisher: MDPI AG
Date: 09-2016
DOI: 10.3390/JCM5090077
Abstract: Despite known health benefits of spiritual care and high patient interest in discussing spirituality with their physicians, the frequency of spiritual discussions in the medical consultation is low. We investigated spiritual conversations for doctors caring for patients with advanced cancer why these conversations so difficult and what the underlying challenges are for discussing spirituality with patients Participants were contacted through the Australian and New Zealand Society of Palliative Medicine and the Medical Oncology Group of Australia, including physicians from two secular countries. Semi-structured interviews were taped and transcribed verbatim. The text was analyzed using thematic analysis Thematic saturation was reached after 23 participants had been interviewed. The following themes were identified: (1) confusing spirituality with religion (2) peer pressure (3) personal spirituality (4) institutional factors (5) historical factors This study explored the underlying attitudes contributing to the reluctance doctors have to discuss spirituality in the medical consultation. Underlying confusion regarding the differences between religion and spirituality, and the current suspicion with which religion is regarded in medicine needs to be addressed if discussion of spirituality in the medical consultation is to become routine. Historical opposition to a biopsychosocial-spiritual model of the human being is problematic.
Publisher: BMJ
Date: 12-2018
DOI: 10.1136/BMJOPEN-2018-023758
Abstract: The importance of ‘whole person’ or ‘holistic’ care is widely recognised, particularly with an increasing prevalence of chronic multimorbidity internationally. This approach to care is a defining feature of general practice. However, its precise meaning remains ambiguous. We aimed to determine how the term ‘whole person’ care is understood by general practitioners (GPs), and whether it is synonymous with ‘[w]holistic’ and ‘biopsychosocial’ care. Systematic literature review. MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Proquest Dissertations and Theses, Science.gov (Health and Medicine database), Google Scholar and included studies’ reference lists were searched with an unlimited date range. Systematic or literature reviews, original research, theoretical articles or books/book chapters specific to general practice relevant to the research question and published in English were included. Included literature was critically appraised, and data were extracted and analysed using thematic synthesis. Fifty publications were included from 4297 non-duplicate records retrieved. Six themes were identified: a multidimensional, integrated approach the importance of the therapeutic relationship acknowledging doctors’ humanity recognising patients’ in idual personhood viewing health as more than absence of disease and employing a range of treatment modalities. Whole person, biopsychosocial and holistic terminology were often used interchangeably, but were not synonymous. Whole person, holistic and biopsychosocial terminology are primarily characterised by a multidimensional approach to care and incorporate additional elements described above. Whole person care probably represents the closest representation of the basis for general practice. Health systems aiming to provide whole person care need to address the challenge of integrating the care of other health professionals, and maintaining the patient–doctor relationship central to the themes identified. Further research is required to clarify the representativeness of the findings, and the relative importance GPs’ assign to each theme. CRD42017058824.
Publisher: Elsevier BV
Date: 12-2019
DOI: 10.1016/J.PEC.2019.06.016
Abstract: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC). This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors. 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion. Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns. Doctors caring for patients at the end of life should routinely raise spiritual issues.
Publisher: Springer Science and Business Media LLC
Date: 05-03-2016
DOI: 10.1007/S00520-016-3135-0
Abstract: A previous survey of the Multinational Association of Supportive Care in Cancer (MASCC) members found low frequency of spiritual care provision. We hypothesized that physicians with special training in palliative medicine would demonstrate an increased sense of responsibility for and higher self-reported adequacy to provide spiritual care to patients than health professionals with general training. We surveyed members of the Australian and New Zealand Palliative Medicine Society (ANZSPM) to ascertain their spiritual care practices. We sent 445 e-mails on four occasions, inviting members to complete the online survey. Tabulated results were analyzed to describe the results. One hundred and fifty-eight members (35.5 %) responded. Physicians working primarily in palliative care comprised the majority (95 %) of the s le. Significantly more of the ANZSPM than MASCC respondents had previously received training in spiritual care and had pursued training in the previous 2 years. There was a significant difference between the two groups with regard to interest in and self-reported ability to provide spiritual care. Those who believed it was their responsibility to provide spiritual care were more likely to have had training, feel they could adequately provide spiritual care, and were more likely to refer patients if they could not provide spiritual care themselves. Training in spiritual care was more common in healthcare workers who had received training in palliative care. ANZSPM members gave higher scores for both the importance of spiritual care and self-reported ability to provide it compared to MASCC members.
Publisher: SAGE Publications
Date: 09-06-2014
Abstract: Being at peace is important for the quality of life of dying cancer patients, but its features, and the role of the doctor in facilitating peace, are unclear. We sought to understand the features of a peaceful patient, and patients’ preferences regarding the role of the doctor in facilitating a sense of peace. A grounded theory approach was used with semi-structured interviews. Patients were asked about the things that gave their life meaning and a sense of peace and how the doctor could support their spiritual well-being. Patients were also questioned about their concerns for their future. In total, 15 cancer patients with advanced disease were interviewed in a variety of care settings. Patients were observed to be along a spectrum between having peace and not having peace. Features of the two extreme positions are described. Doctors could facilitate peace by developing a good relationship with cancer patients and supplying clear and honest information about what patients could expect as they approached their death. Spiritual well-being in cancer patients can be promoted by communication from doctors regarding prognosis, which allows them time to prepare for death, and recognition of their fears. However, acceptance of death does not always lead to the patient experiencing peace.
Publisher: Springer Science and Business Media LLC
Date: 26-07-2022
DOI: 10.1007/S10943-022-01608-3
Abstract: This study aimed to design, validate and standardize the Spiritual Supporter (SpSup) Scale, a tool designed to assess competency to provide spiritual care including knowledge, sensitivity to spiritual needs and spiritual support skills. This instrument can be used by all those engaged in or training for caregiving roles. The study was conducted in Poland in the Polish language. The SpSup Scale demonstrates high overall reliability (Cronbach’s α = 0.88), a satisfactory diagnostic accuracy (0.79), and a satisfactory discriminatory power of the items. Given the psychometric properties of SpSup Scale demonstrated here, the scale is recommended for the assessment of the competency to provide spiritual care in both clinical and research settings in Poland.
Publisher: Informa UK Limited
Date: 28-12-2022
DOI: 10.1080/08854726.2020.1861536
Abstract: The global coronavirus pandemic (COVID-19) has brought about physical, psychological and spiritual challenges within health and aged care services across Australia. The aim of this study was to consider the impact of COVID-19 from the perspective of Australian chaplains. Semi-structured interviews were conducted with 17 chaplains. A grounded theory analysis identified three overarching themes: (1) a changing healthcare environment (2) the impact of the virus and (3) chaplains responding to the crisis. Increased healthcare restrictions in response to COVID-19 raised levels of fear and anxiety among patients, residents, family members and staff, and generated feelings of isolation and disconnection. Chaplains responded by providing a calm presence, being available, holding out hope, introducing creative ways to provide spiritual care and seeking spiritual nourishment themselves. The value of chaplaincy in health and aged care services is discussed in light of these findings.
Publisher: Wiley
Date: 31-03-2021
DOI: 10.1002/JGC4.1398
Abstract: Cancer‐related illness uncertainty has been associated with poorer psychological outcomes for patients. While some cancer patients believe obtaining genomic information will reduce their illness uncertainty, the complexity of genomics has the potential to compound illness uncertainty. The aim of this mixed‐methods study was to investigate uncertainty in patients with a cancer of likely heritable origin immediately following their decision to have germline genome sequencing. Participant ( N = 348) negative attitudes toward uncertainty were associated with higher satisfaction with decision to have germline genome sequencing and greater fear of cancer recurrence. Thematic analysis of semi‐structured interviews with a subset of participant ( N = 20) revealed the following four themes: (a) germline genome sequencing to reduce illness uncertainty (b) germline genome sequencing to reduce uncertainty related to relatives’ risk (c) uncertainty generated by germline genome sequencing and (d) resilience and coping with uncertainty. This study demonstrated the complexity of uncertainty in germline genome sequencing in cancer patients. These results provide genomic healthcare professionals with important information about cancer patient's motivation to pursue germline genome sequencing, the specific uncertainties generated by germline genome sequencing, and how cancer patients cope with uncertainty.
Publisher: Elsevier BV
Date: 09-2020
Publisher: Cambridge University Press (CUP)
Date: 11-11-2015
DOI: 10.1017/S1478951514001217
Abstract: An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer. A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared. A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component. Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.
Location: Australia
Location: Australia
No related grants have been discovered for Megan Best.