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.

Exploring work-related stressors experienced by mental health nurses: A qualitative descriptive study.

INTRODUCTION: The challenging work environments mental health nurses (MHNs) encounter can negatively impact their mental health, psychological well-being and physical health. While these impacts have been investigated in quantitative research, little is known about work-related stress from the perspective of MHNs. AIM: To explore the stresses faced by nurses working in mental health settings and to gain an understanding of the underlying workplace context. METHOD: A descriptive qualitative study with data collected via semi-structured individual telephone interviews conducted with n = 21 Western Australian MHNs. Data were analysed using reflexive thematic analysis. RESULTS: A total of 85 codes were generated that led to the identification of 13 subthemes and 4 main themes: (1) mental health nursing context, (2) work environment stressors, (3) factors that alleviate stress and (4) the impact of workplace stress. DISCUSSION: Many of the stressors MHNs were exposed to are modifiable, such as understaffing and poor skill mix. Modifiable stressors increased risk for MHNs, impeded patient care and exacerbated inherent stressors such as patient acuity and complexity. IMPLICATIONS FOR PRACTICE: This study collected data that provide rich descriptions of the experiences of MHNs and identify modifiable work-related stressors that could be alleviated through effective leadership and management.

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.

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.

A survey of genetic and palliative care health professionals' views of integrating genetics into palliative care.

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.

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.

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.

BEhavioral Health Stratified Treatment (B.E.S.T.) to optimize transition to adulthood for youth with intellectual and/or developmental disabilities.

Youth with intellectual and/or developmental disabilities (IDD) often struggle with depression and anxiety, which adversely impacts transition to adulthood. Integrated behavioral health care coordination, wherein care coordinators and behavioral health specialists collaborate to provide systematic, cost-effective, patient-centered care, is a promising strategy to improve access to behavioral health services and address factors that impact transition to adulthood, including depression/anxiety symptoms. Current care coordination models (e.g., Title V Maternal and Child Health Bureau [MCHB]) do not include behavioral health services. The CHECK (Coordinated HealthCarE for Complex Kids) mental health model, hereby refined and renamed BEhavioral Health Stratified Treatment (B.E.S.T.), is a behavioral health intervention delivery program designed for integration into care coordination programs. This study aims to determine whether an integrated behavioral health care coordination strategy (i.e., MCHB care coordination plus B.E.S.T.) would be more acceptable and lead to better youth health and transition outcomes, relative to standard care coordination (i.e., MCHB care coordination alone). Results would guide future investment in improving outcomes for youth with IDD. This study is a two-arm randomized clinical trial of 780 transition-aged youth with IDD (13-20 years) to evaluate the comparable efficacy of MCHB Care Coordination alone vs. MCHB Care Coordination plus B.E.S.T. on the following outcomes: 1) decreased symptoms and episodes of depression and anxiety over time; 2) improved health behaviors, adaptive functioning and health related quality of life; 3) increased health care transition (HCT) readiness; and 4) improved engagement and satisfaction with care coordination among stakeholders.

Where the joy comes from: a qualitative exploration of deep GP-patient relationships.

BACKGROUND: Relationship-based, whole person care is foundational to quality general practice. Previous research has identified several characteristics of deep General Practitioner (GP)-patient relationships and their association with improved patient concordance, satisfaction and perceived health outcomes. Psychological attachment theory has been used to understand therapeutic relationships, but has only been explored to a limited extent in the general practice context. Additionally, evolving changes in sociocultural and commercial practice contexts may threaten relationship-based care. In view of this, we aimed to explore the nature and experience of deep GP-patient relationships, as identified by patients, from GP and patient perspectives. METHODS: Semi-structured interview design. An initial survey assessed patients' perceived depth of their relationship with their GP, using the Health Care Provider Attachment Figure Survey and Patient-Doctor Depth of Relationship Scale. Patients who reported a deep relationship, and their GPs, were purposively selected for individual interviews exploring their experience of these relationships. A post-interview survey assessed interviewees' attachment styles, using the Modified and Brief Experiences in Close Relationships Scale. Patient interviewees also rated the patient-centredness of their GP's clinic using the Person-Centred Primary Care Measure. Transcripts were analysed using thematic analysis. RESULTS: Thirteen patients and five GPs were interviewed. Four themes characterised deep relationships: the 'professional'; human connection; trust; and 'above and beyond'. Patient, GP and practice team all contributed to their cultivation. CONCLUSIONS: We present a revised conceptual framework of deep GP-patient relationships. Deep relationships come to the fore in times of patient trouble. Like attachment relationships, they provide a sense of safety, caring and support for patients experiencing vulnerability. They can stretch GP boundaries and capacity for self-care, but also provide joy and vocational satisfaction. Patients may not always desire or need deep relationships with their GP. However, findings highlight the importance of enabling and cultivating these for times of patient hardship, and challenges of doing so within current healthcare climates.

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.

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.

Family communication and results disclosure after germline sequencing: A mixed methods study.

OBJECTIVE: Research on family communication of germline genome sequencing (GS) results (versus of genetic results after targeted genetic testing) is still emerging, yet potentially complex results increase the importance of communicating risk to relatives. Promoting equity by ensuring patients have sufficient health literacy to interpret results is important in this context. This study aimed to identify cancer patients' perceived importance of result disclosure, predictors of perceptions, and perspectives on family communication. METHODS: This explanatory-sequential, cross-sectional mixed-methods study involved participants (n = 246) completing a questionnaire and (n = 20) a semi-structured interview. Ordinal logistic regressions determined associations between potential predictors and perceived importance of result disclosure. Interview transcripts were analysed thematically using a constant-comparative approach. RESULTS: More participants intended disclosing to nuclear (77.4%) than to extended family (42.7%). More than half (59.3%) felt results were family information; 62.7% believed it was important to disclose results to family members. Nuclear and extended family communication scores and education level were significantly positively associated with perceived importance of disclosure (p < 0.05). Six qualitative themes were identified: i) Responsibility to inform, ii) Choice, iii) Autonomy, iv) Family Communication, v) Significance of results, and vi) Health professional role. CONCLUSION: Low health literacy and family conflict can complicate communication of GS results. Patients seek clear, interpretable information in a format they can easily communicate. PRACTICE IMPLICATIONS: Healthcare professionals can facilitate discussion of GS results by offering written information, encouraging disclosure, exploring existing family dynamics and communication patterns, and offering strategies to improve family communication. Centralised genetic communication offices and chatbots can also be helpful.

Whole person assessment for family medicine: a systematic review.

OBJECTIVES: To identify and evaluate clinical approaches to whole person assessment (WPA) that are translatable to family medicine regarding feasibility, quality and alignment with theoretical models of whole person care (WPC). DESIGN: Systematic literature review. DATA SOURCES: MEDLINE, CINAHL, PsycINFO and ATLA Religion databases were searched through 9 March 2020, with additional handsearches. ELIGIBILITY CRITERIA: English language clinical assessments of multiple domains; which involve patient-clinician interaction and are translatable to general practice (GP); from the fields of medicine, allied health, nursing, mental health and pastoral care. Tools designed for single diseases or symptoms, for outcome rather than clinical assessment or with outdated classification systems were excluded. DATA EXTRACTION AND SYNTHESIS: We appraised the quality of included papers using Johanna Briggs' Institute Checklists and Terwee's criteria for validation studies. Clinical assessments' alignment with theoretical WPC, feasibility for adaptation to GP and quality were examined. We analysed extracted data using framework synthesis. RESULTS: Searches retrieved 7535 non-duplicate items. Fifty-nine were included after screening, describing 42 WPA methods and representing multiple disciplines, purposes and formats. All included assessments aligned partially with models of WPC, but most did not adequately encompass all aspects of WPC. Robustness varied significantly and was often inadequately described. We judged none of the identified assessments to be ideal as a multipurpose WPA in GP. Some could be used for specific purposes, such as elicitation of patient perspectives or complexity assessment. CONCLUSIONS: While no WPAs were found that were sufficient for broad implementation in GP, some approaches may be suitable with adaptation and evaluation. Strengths of existing approaches could inform WPA development in future. PROSPERO REGISTRATION NUMBER: CRD42020164417.

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.

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 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.

What is the role of spiritual care specialists in teaching generalist spiritual care? The perspectives of pastoral care staff in a large Catholic health and aged care organisation.

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.