From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

"Not me!" a qualitative, vignette-based study of nurses' and physicians' reactions to spiritual distress on neuro-oncological units.

PURPOSE: People with primary malignant brain tumors experience serious health-related suffering caused by limited prognosis and high symptom burden. Consequently, neuro-oncological healthcare workers can be affected emotionally in a negative way. The aim of this study was to analyze the attitudes and behavior of nurses and physicians when confronted with spiritual distress in these patients. METHODS: Neurospirit-DE is a qualitative vignette-based, multicenter, cross-sectional online survey that was conducted in Bavaria, Germany. Reflexive thematic analysis was used for data analysis. RESULTS: A total of 143 nurses and physicians working in neurological and neurosurgical wards in 46 hospitals participated in the survey. The participants questioned if the ability to provide spiritual care can be learned or is a natural skill. Spiritual care as a responsibility of the whole team was highlighted, and the staff reflected on the appropriate way of involving spiritual care experts. The main limitations to spiritual care were a lack of time and not viewing spiritual engagement as part of the professional role. Some were able to personally benefit from spiritual conversations with patients, but many participants criticized the perceived emotional burden while expressing the imminent need for specific training and team reflection. CONCLUSIONS: Most neuro-oncological nurses and physicians perceive spiritual care as part of their duty and know how to alleviate the patient's spiritual distress. Nonetheless, validation of spiritual assessment tools for neuro-oncology and standardized documentation of patients' distress, shared interprofessional training, and reflection on the professional and personal challenges faced when confronted with spiritual care in neuro-oncology require further improvement and training.

Effect of a Spiritual Care Training Program to Build Knowledge, Competence, Confidence and Self-awareness Among Australian Health and Aged Care Staff: An Exploratory Study.

The aim of this study was to evaluate a new spiritual care training program with health and aged care staff. A four-module program was delivered to 44 participants at a large Catholic health and aged care provider in Australia. Pre, post and 6 week follow-up surveys were administered and included measures of spiritual care competency, confidence, perspectives of spirituality and spiritual care, spiritual well-being, and satisfaction. Paired sample t-tests showed total scores of participants' spiritual well-being, spiritual care competency and confidence significantly improved following the training and were largely maintained at follow-up. Perspectives on spirituality and spiritual care did not significantly change over time.

Military Perspectives on the Provision of Spiritual Care in the Australian Defence Force: A Cross-Sectional Study.

A module to explore perspectives on chaplaincy services was included in an online enterprise survey randomly distributed to members of the Australian Defence Force (ADF) during 2021. Up to eight questions were answered by 2783 active military personnel relating to their perception of chaplain activities and the impact of chaplaincy services. Of those military participants answering the question on religious status (n = 1116), a total of 71.6% (n = 799) of respondents identified as non-religious while 28.4% (n = 317) identified as holding a religious affiliation. Approximately 44.2% (n = 1230) of participants had sought support from a chaplain, of which 85.3% (n = 1049) found chaplaincy care to be satisfactory or very satisfactory. While the data suggest there is a lack of clarity around the multiple roles undertaken by chaplaincy, nevertheless respondents were just as likely to prefer chaplains for personal support (24.0%), as they were to seek help from non-chaplaincy personnel such as a non-ADF counsellor (23.2%), their workplace supervisor (23.1%) or a psychologist (21.8%). This evidence affirms that the spiritual care provided by military chaplaincy remains one of several preferred choices and thus a valued part of the holistic care provided by the ADF to support the health and wellbeing of its members.

Australian Patient Preferences for Discussing Spiritual Issues in the Hospital Setting: An Exploratory Mixed Methods Study.

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 individual characteristics of the staff member are more important than their role.

Measurement of Spiritual Wellbeing in an Australian Hospital Population Using the Functional Assessment of Chronic Illness Therapy: Spiritual Wellbeing Scale (FACIT-Sp-12).

Spiritual wellbeing is known to be a predictor of increased patient coping in hospital settings. Therefore, access to a valid and reliable measure of spiritual wellbeing amongst general hospital patients is highly recommended. The aim of this study was to investigate the dimensionality, reliability, and validity of the Functional Assessment of Chronic Illness Therapy Spiritual Wellbeing scale (FACIT-Sp-12) in a heterogeneous cohort of hospital patients. A cross-sectional survey was administered to 897 adult patients across six hospitals in Sydney, Australia. Confirmatory factor analysis for the three-factor FACIT-12-Sp indicated a poor fit, but after removal of Item 12, the three-factor FACIT-11-Sp presented a good fit to the data. Reliability testing indicated acceptable to good internal consistency. Validity was supported by statistically significant differences between patients who considered themselves 'both spiritual and religious' and 'not religious or spiritual'. While some caution should be taken when using the FACIT-Sp due to several limitations, nevertheless, in a general hospital population in Australia, the three-factor FACIT-11-Sp indicated good dimensionality, reliability, and validity.

Stakeholder perspectives on the impact of COVID-19 on oncology services: a qualitative study.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Evaluation of the Interprofessional Spiritual Care Education Curriculum in Australia: Online.

OBJECTIVE: 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. METHOD: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Spirituality is "sometimes just a hug": A conceptual analysis from the perspective of nursing students.

OBJECTIVES: 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. METHODS: This study used a conceptual analysis to explore the understanding of spirituality by German-speaking nurses in an educational context. RESULTS: 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. SIGNIFICANCE OF RESULTS: These findings have implications for how spirituality is introduced in nursing education.

Chaplaincy Perspectives on the Role of Spirituality in Australian Health and Aged Care.

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.

The Impact of Faith-Based Pastoral Care in Decreasingly Religious Contexts: The Australian Chaplaincy Advantage in Critical Environments.

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 diverse populations to whom religiosity is increasingly important.

Australian Patient Preferences for the Introduction of Spirituality into their Healthcare Journey: A Mixed Methods Study.

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.

Further validation of the Perceptions of Uncertainties in Genome Sequencing scale among patients with cancer undergoing tumor sequencing.

It is important to understand how individuals 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 individuals 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 (χ2 /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.

Psychological predictors of advanced cancer patients' preferences for return of results from comprehensive tumor genomic profiling.

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.

Return of comprehensive tumour genomic profiling results to advanced cancer patients: a qualitative study.

PURPOSE: 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. METHODS: Semi-structured interviews with 37 advanced cancer patients were conducted within two weeks of patients receiving CGP results. Interviewees were purposively sampled based on CGP result, cancer type, age and gender to ensure diversity. Themes were derived from interview transcripts using a framework analysis approach. RESULTS: 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. CONCLUSION: 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.

Value of whole-genome sequencing to Australian cancer patients and their first-degree relatives participating in a genomic sequencing study.

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 individuals in different risk circumstances, trade-off the risks, harms, and benefits of GS.

Factors Influencing Military Personnel Utilizing Chaplains: A Literature Scoping Review.

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.

Longitudinal patterns in fear of cancer progression in patients with rare, advanced cancers undergoing comprehensive tumour genomic profiling.

INTRODUCTION: 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. METHODS: 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). RESULTS: 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. DISCUSSION: 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.

Fear of cancer recurrence in patients undergoing germline genome sequencing.

PURPOSE: Fear of cancer recurrence/occurrence (FCR/O) is prevalent and associated with poorer psychological outcomes but can also motivate individuals to pursue genomic information about cancer risk. Guided by Protection Motivation Theory, this study investigated FCR/O prevalence and associated factors among probands previously diagnosed with a cancer of likely heritable origin, and their relatives, who had agreed to have germline genome sequencing. METHODS: Three hundred and forty-eight probands and 167 relatives completed the Concerns about Recurrence Questionnaire (adapted for occurrence for some relatives) within 1 month of agreeing to undertake genome sequencing. Linear regressions investigated demographic, disease, attitude and behavioral associations with FCR/O. RESULTS: Probands demonstrated greater FCR compared to relatives. In probands, greater FCR was associated with being female, non-English speaking at home, less time since diagnosis, greater intention to change behavior if gene variant found, lower perceived ability to cope with results, higher perceived susceptibility to having a recurrence, and more negative attitudes towards uncertainty. For relatives with cancer, greater FCR was associated with being male, greater intention to change behavior if a gene variant found, and higher perceived susceptibility to recurrence. In relatives without cancer, greater FCO was associated with not having had genetic testing prior to this study, lower perceived ability to cope with results, and higher perceived susceptibility to developing cancer. CONCLUSION: Current findings on FCR/O prevalence and associated demographic and attitudinal variables in those who pursue genomic risk information might be used to target interventions that can prevent adverse psychological outcomes in vulnerable patients.

Australian perspectives on spiritual care training in healthcare: A Delphi study.

OBJECTIVE: The aim was to to establish core components of spiritual care training for healthcare professionals in Australia. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.