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.

Vignettes as a novel research tool in spiritual care: A methods paper.

AIMS: To discuss the construction and use of vignettes as a novel approach in spiritual care research and education. DESIGN: Methods paper. METHODS: In this methods paper, the authors introduce the use of vignettes in spiritual care research and provide insight into the construction of vignettes. The vignette presented was part of a study of neurosurgical nurses' attitudes and responses to the spiritual needs of neuro-oncology patients. The development process, consisting of four steps, is explained in this paper. RESULTS: Using a vignette to explore nurses' attitudes towards spiritual care is an innovative way to understand what behaviours nurses consider appropriate in situations where the patient is seeking meaning and connection. Transparent description of the development process is crucial to ensure reproducibility. CONCLUSION: The use of theoretically constructed and validated vignettes in spiritual care research is new. Vignettes used in surveys have the potential to elicit nurses' responses to patients' search for meaning and connectedness. IMPLICATIONS: In order to investigate nurses' attitudes and behaviours towards patients' spiritual needs, carefully constructed and validated vignettes are valuable research tools. IMPACT: Vignettes have proven to be a valuable research tool in the social and health sciences. So far, their use as a survey instrument in spiritual care research has not been investigated. Therefore, this method paper introduces vignettes as a novel approach to spiritual care research. Our findings contribute to the further development of vignettes in nursing science, as there are similarities with case development and simulation training in nursing education. REPORTING METHOD: Reporting guideline is not applicable. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Nurses' models of spiritual care: A cross-sectional survey of American nurses.

OBJECTIVES: 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. METHODS: A convenience sample 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

An Online Survey of Australian Medical Students' Perspectives on Spiritual History Taking and Spiritual Care.

It is reported that little spiritual care communication skills training occurs in Australian medical schools. This survey explored the experience of final year students in this domain in order to inform the construction of a new curriculum. Medical students in their final year at four Australian medical schools were invited to participate in an online survey, which included questions about demographic details, exposure to spiritual history taking, perceived learning needs, and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being 12 item Non-Illness score. Two-hundred and sixty students from a cohort of 766 responded (34%). One in nine students had witnessed spiritual history taking, and one in ten students had been given the opportunity to do so. Barriers and enablers were identified. Two-thirds of the students reported no recollection of any training in spiritual care. When it did occur, it was limited in scope and structure. Final year medical students recognise that spiritual care deserves a place in the modern, broad-based medical school curriculum. This supports the argument for inclusion of spiritual care training as part of all medical student curricula in Australia.

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.

The Spiritual Supporter Scale as a New Tool for Assessing Spiritual Care Competencies in Professionals: Design, Validation, and Psychometric Evaluation.

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.

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.

Validation of the multidimensional impact of Cancer Risk Assessment Questionnaire to assess impact of waiting for genome sequencing results.

OBJECTIVE: To determine whether the existing Multidimensional Impact of Cancer Risk Assessment (MICRA) scale, which assesses impact of receiving genetic test results on individuals being assessed for cancer risk, can be successfully adapted to cancer patients experiencing prolonged waiting for results of germline genome sequencing (GS). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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.