Making the unbearable, bearable: Qualitative examination of patient, family and nurses' perspectives on the role and value of specialist metastatic breast care nurses.

PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.

Evaluation of an online education program for healthcare professionals on best practice management of perinatal deaths: IMPROVE eLearning.

BACKGROUND: The IMPROVE (IMproving Perinatal Mortality Review and Outcomes Via Education) eLearning, developed by the Stillbirth Centre of Research Excellence in partnership with the Perinatal Society of Australia and New Zealand was launched in December 2019. Based on the successful face-to-face program, the eLearning aims to increase availability and accessibility of high-quality online education to healthcare professionals providing care for families around the time of perinatal death, to improve the delivery of respectful and supportive clinical care and increase best practice investigation of perinatal deaths. AIMS: To evaluate participants' reported learning outcomes (change in knowledge and confidence) and overall acceptability of the program. METHODS: Pre- and post-eLearning in-built surveys were collected over two years (Dec. 2019-Nov. 2021), with a mix of Likert and polar questions. Pre- and post-eLearning differences in knowledge and confidence were assessed using McNemar's test. Subgroup analysis of overall acceptability by profession was assessed using Pearson's χ2 . RESULTS: One thousand, three hundred and thirty-nine participants were included. The majority were midwives (80.2%, n = 1074). A significant improvement in knowledge and confidence was shown across all chapters (P < 0.01). The chapter showing the greatest improvement was perinatal mortality audit and classification (21.5% pre- and 89.2% post-education). Over 90% of respondents agreed the online education was relevant, helpful, acceptable, engaging. Importantly, 80.7% of participants considered they were likely to change some aspect of their clinical practice after the eLearning. There was no difference in responses to relevance and acceptability of the eLearning program by profession. CONCLUSIONS: The IMPROVE eLearning is an acceptable and engaging method of delivery for clinical education, with the potential to improve care and management of perinatal deaths.

Australasian genetic counselors' attitudes toward disability and prenatal testing: Findings from a cross-sectional survey.

Diagnostic genetic testing and non-invasive prenatal testing (NIPT) for conditions associated with disability are becoming increasingly available to consumers. This genetic information can be used in the disability setting to inform factors such as prognosis, management, and reproductive decision-making. Genetic counselors (GCs) play an important role in the provision of genetic testing and NIPT, and their attitudes toward disability can influence how genetic information is communicated and shape patients' responses. This study aimed to evaluate and describe Australasian GCs' experience with and attitudes toward disabilities to identify potential biases and training needs. A cross-sectional survey was distributed to 400 GCs registered with the Human Genetics Society of Australasia. Of the 106 respondents (participation rate: 26%), a significantly greater proportion were more comfortable interacting with individuals with physical disability as compared to intellectual disability (p < 0.001). GCs with personal experiences with disabilities reported significantly greater comfort interacting with people with intellectual disability than those without experience (p = 0.012). Qualitative analysis revealed discomfort was less reflective of bias than inexperience and apprehension about communicating disrespectfully. GCs believed people with disabilities experience discrimination and that having a disability could make a person stronger, wiser, and more motivated. Most GCs viewed prenatal testing for disabilities positively as it allowed for decisions regarding continuing the pregnancy and/or provided opportunity to prepare. Challenges identified for prenatal counseling included negative societal attitudes and the low visibility of disability. GCs felt that 'personal beliefs' was the primary factor influencing the decision to terminate a pregnancy affected by disability. These findings highlight important education and training needs for GCs to improve preparedness and comfort when communicating with people with a disability.

My Baby's Movements: An assessment of the effectiveness of the My Baby's Movements phone program in reducing late-gestation stillbirth rates.

BACKGROUND: Delayed reporting of decreased fetal movements (DFM) could represent a missed opportunity to prevent stillbirth. Mobile phone applications (apps) have the potential to improve maternal awareness and reporting of DFM and contribute to stillbirth prevention. AIMS: To evaluate the effectiveness of the My Baby's Movements (MBM) app on late-gestation stillbirth rates. MATERIALS AND METHODS: The MBM trial evaluated a multifaceted fetal movements awareness package across 26 maternity services in Australia and New Zealand between 2016 and 2019. In this secondary analysis, generalised linear mixed models were used to compare rates of late-gestation stillbirth, obstetric interventions, and neonatal outcomes between app users and non-app users including calendar time, cluster, primiparity and other potential confounders as fixed effects, and hospital as a random effect. RESULTS: Of 140 052 women included, app users comprised 9.8% (n = 13 780). The stillbirth rate was not significantly lower among app users (1.67/1000 vs 2.29/1000) (adjusted odds ratio (aOR) 0.79; 95% CI 0.51-1.23). App users were less likely to have a preterm birth (aOR 0.81; 0.75-0.88) or a composite adverse neonatal outcome (aOR 0.87; 0.81-0.93); however, they had higher rates of induction of labour (IOL) (aOR 1.27; 1.22-1.32) and early term birth (aOR 1.08; 1.04-1.12). CONCLUSIONS: The MBM app had low uptake and its use was not associated with stillbirth rates but was associated with some neonatal benefit, and higher rates of IOL and early term birth. Use and acceptability of tools designed to promote fetal movement awareness is an important knowledge gap. The implications of increased IOL and early term births warrant consideration in future studies.

Time trends, projections, and spatial distribution of low birthweight in Australia, 2009-2030: Evidence from the National Perinatal Data Collection.

INTRODUCTION: Infants with low birthweight (LBW, birthweight <2500 g) have increased in many high-resource countries over the past two decades. This study aimed to investigate the time trends, projections, and spatial distribution of LBW in Australia, 2009-2030. METHODS: We used standard aggregate data on 3 346 808 births from 2009 to 2019 from Australia's National Perinatal Data Collection. Bayesian linear regression model was used to estimate the trends in the prevalence of LBW in Australia. RESULTS: Wefound that the prevalence of LBW was 6.18% in 2009, which has increased to 6.64% in 2019 (average annual rate of change, AARC = +0.76%). If the national trend remains the same, the projected prevalence of LBW in Australia will increase to 7.34% (95% uncertainty interval, UI = 6.99, 7.68) in 2030. Observing AARC across different subpopulations, the trend of LBW was stable among Indigenous mothers, whereas it increased among non-Indigenous mothers (AARC = +0.81%). There is also an increase among the most disadvantaged mothers (AARC = +1.08%), birthing people in either of two extreme age groups (AARC = +1.99% and +1.53% for <20 years and ≥40 years, respectively), and mothers who smoked during pregnancy (AARC = +1.52%). Spatiotemporal maps showed that some of the Statistical Area level 3 (SA3) in Northern Territory and Queensland had consistently higher prevalence for LBW than the national average from 2014 to 2019. CONCLUSION: Overall, the prevalence of LBW has increased in Australia during 2009-2019; however, the trends vary across different subpopulations. If trends persist, Australia will not achieve the Sustainable Development Goals (SDGs) target of a 30% reduction in LBW by 2030. Centering and supporting the most vulnerable subpopulations is vital to progress the SDGs and improves perinatal and infant health in Australia.

Screening for adverse childhood experiences in antenatal care settings: A scoping review.

BACKGROUND: Adverse childhood experiences (ACEs) are associated with many health problems in women during pregnancy, including depression/anxiety, gestational diabetes and adverse birth outcomes. However, unlike other health risk factors, screening for ACEs has not been widely implemented in antenatal care settings. AIMS: The aim of the scoping review was to explore the challenges in screening for ACEs in antenatal care settings and to provide the lessons learnt and evidence that guide the practice of ACE screening for both healthcare providers and pregnant women. METHODS: A five-stage process for conducting the scoping review was utilised. Searches of four key databases (PubMed, PsycINFO, CINAHL and SCOPUS) and reference lists from relevant studies were conducted. RESULTS: Seven publications met the inclusion criteria. Challenges identified for healthcare providers in screening for ACEs include lack of knowledge and confidence in ACE tool and shortage of time and resources to undertake screening. Impediments for pregnant women include concerns about privacy. However, there were examples of effective practice for ACE screening in antenatal care settings that could apply widely. CONCLUSION: Addressing impediments to ACE screening is critical in implementing trauma-informed practices that can identify women at risk of adverse health outcomes during pregnancy. A study on screening for ACEs in antenatal care in both public and private settings is needed to examine its feasibility and acceptability in the Australian context before being included in the National Perinatal Data Collection.

Nature-based interventions for bereavement care: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to understand the types of nature-based interventions currently used in bereavement care and to map the theories of change explaining how such interventions may support bereavement care. INTRODUCTION: Bereavement can be associated with adverse psychosocial health outcomes. Nature-based interventions have been shown to have positive health and well-being outcomes, and offer diverse and flexible design and delivery options. However, this is an emerging field, and there is a need to explore the literature on the different types of nature-based interventions used in bereavement care and to identify the underpinning theories of change. INCLUSION CRITERIA: This review will include studies or reviews of participants who have experienced bereavement following the death of a loved one, and who have taken part in a nature-based intervention (eg, animal-assisted therapy, care farming, therapeutic horticulture, community gardens). Considering all nature contexts and geographic locations, this review will include studies that explore the role of nature-based interventions in bereavement care. METHODS: Searches will be conducted in eight databases: Web of Science, Scopus, PubMed, PsycINFO, CINAHL, Social Science Database (ProQuest), PTSDpubs (ProQuest), and Research Library: Health and Medicine (ProQuest). Manual searches of reference lists of included full-text articles and keyword searches of prominent journals will be conducted. Data on the type of nature-based intervention, target sample, health outcomes, measures and methods used, and theory of change will be extracted from selected articles. The data extraction results will be presented in tabular format along with a narrative summary.

Evidence available to guide care during labor and birth for women and their partners who know their baby will be stillborn: a scoping review protocol.

OBJECTIVE: The aim of the proposed scoping review is to explore and summarize the range of available evidence for bereavement care, specifically in relation to labor and birthing experiences of a stillborn baby. INTRODUCTION: Clinical practice guidelines for bereavement care following pregnancy loss have been developed. However, there remains a lack of evidence to guide recommendations for providing appropriate care to parents at the time of diagnosis, and during the labor and birth of a stillborn baby. INCLUSION CRITERIA: The proposed review will consider studies, reports, guidelines, evidence syntheses, and other relevant literature that explore the experiences, needs, and care provided to bereaved parents during labor and birth of a stillborn baby. METHODS: The search strategy for the proposed scoping review will aim to locate both published and unpublished documents, using a three-step search strategy. An initial search will be conducted using the databases MEDLINE and CINAHL to identify relevant articles; a second search will be conducted across all included databases, incorporating identified keywords and index terms; and finally the reference lists of included studies will be screened for additional sources. Google Scholar and Web of Science will be searched for relevant gray literature. The search will restrict documents from 2000 to present to maintain clinical relevancy. Only studies published in English will be included. Results of the search will be exported into a template, where data will be categorized using five key domains (communication, recognition of parenthood, effective support, shared decision-making, and organizational response) summarized into positive, negative, or neutral outcomes, and further refined into common issues across these domains. SCOPING REVIEW REGISTRATION: Open Science Framework "birthing in grief: a scoping review" https://osf.io/xw9md.

Stillbirth in Lao PDR: a healthcare provider perspective.

BACKGROUND: Stillbirth is a major global concern. However, most research has been conducted in high-income countries. Understanding of the experience and management of stillbirth in low-middle income countries is needed. OBJECTIVE: This qualitative study explored health professionals' experiences of providing stillbirth care in the Lao People's Democratic Republic, a lower-middle-income country in South-East Asia. METHODS: In-depth interviews were conducted with 33 health professionals (doctors, midwives and nurses) and thematic analysis was undertaken. RESULTS: All participants acknowledged stillbirth as a concern, but its incidence and causes were largely undocumented and unknown. A lack of training in managing stillbirth left health professionals often ill-equipped to support mothers and provide responsive care. Social stigma surrounds stillbirth, meaning mothers found limited support or opportunities to openly express their grief. CONCLUSIONS: Better awareness of stillbirth causes could promote more positive experiences for healthcare providers and parents and more responsive healthcare. This requires improved training for healthcare professionals and awareness raising in the wider community.

Associations between sex, age and spiritual well-being scores on the EORTC QLQ-SWB32 for patients receiving palliative care for cancer: A further analysis of data from an international validation study.

OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores. METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied. RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self. CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.

Accreditation Standard Guideline Initiative for Tai Chi and Qigong Instructors and Training Institutions.

Evidence of the health and wellbeing benefits of Tai Chi and Qigong (TQ) have emerged in the past two decades, but TQ is underutilized in modern health care in Western countries due to lack of promotion and the availability of professionally qualified TQ instructors. To date, there are no government regulations for TQ instructors or for training institutions in China and Western countries, even though TQ is considered to be a part of Traditional Chinese medicine that has the potential to manage many chronic diseases. Based on an integrative health care approach, the accreditation standard guideline initiative for TQ instructors and training institutions was developed in collaboration with health professionals, integrative medicine academics, Tai Chi and Qigong master instructors and consumers including public safety officers from several countries, such as Australia, Canada, China, Germany, Italy, Korea, Sweden and USA. In this paper, the rationale for organizing the Medical Tai Chi and Qigong Association (MTQA) is discussed and the accreditation standard guideline for TQ instructors and training institutions developed by the committee members of MTQA is presented. The MTQA acknowledges that the proposed guidelines are broad, so that the diversity of TQ instructors and training institutions can be integrated with recognition that these guidelines can be developed with further refinement. Additionally, these guidelines face challenges in understanding the complexity of TQ associated with different principles, philosophies and schools of thought. Nonetheless, these guidelines represent a necessary first step as primary resource to serve and guide health care professionals and consumers, as well as the TQ community.

Barriers and enablers to implementing scalp cooling in Australia: a qualitative study of health professionals' attitudes to and experience with scalp cooling.

BACKGROUND: Chemotherapy-induced alopecia is a common and distressing adverse event for patients. Scalp cooling to reduce this alopecia has been available in Europe for more than a decade, but only recently introduced in Australia. The aim of this study was to qualitatively explore health professionals' perceptions of the barriers and enablers to the implementation of scalp cooling in Australian cancer centres. METHODS: Using a qualitative methodology, telephone interviews were conducted with 21 health professionals working in a tumour stream where chemotherapy-induced alopecia is an adverse event of treatment. Participants were recruited from five centres in Australia where scalp cooling is currently available and one centre without access to the technology. RESULTS: Four interrelated themes were identified: (1) health professional attitudes, (2) concerns for patient equity, (3) logistical considerations and (4) organisational support. CONCLUSIONS: This qualitative study provides the first methodological exploration of Australian health professionals' perceptions of barriers and enablers to scalp cooling uptake. The results highlighted health professional support drives the introduction of scalp cooling. Integration of the technology requires adjustments to nursing practice to manage the increased time, workload and change in patient flow. Strategies to manage the change in practice and organisational support for change in work flow are essential for successful implementation into routine care.

Randomized controlled trial of a structured intervention to facilitate end-of-life decision making in patients with advanced cancer.

PURPOSE: This study tested the efficacy of an intervention on end-of-life decision making for patients with advanced cancer. PATIENTS AND METHODS: One hundred twenty patients with metastatic cancer who were no longer being treated with curative intent (and 87 caregivers) were randomly assigned to the intervention (n = 55) or treatment as usual (n = 65). Primary outcome measures were the proportion of patients with do-not-resuscitate (DNR) orders, timing of DNR orders, and place of death. Secondary outcome measures were completed at study enrollment, 3 weeks later, and 3 months later, including patients' knowledge, mood, and caregiver burden. RESULTS: High, but equivalent, rates of DNR orders were observed in both groups. In per-protocol analyses, DNR orders were placed earlier for patients who received the intervention (median, 27 v 12.5 days; 95% CI, 1.1 to 5.9; P = .03) and they were more likely to avoid a hospital death (19% v 50% (95% CI, 11% to 50%; P = .004). Differences between the groups over time were evident for estimates of cardiopulmonary rehabilitation (CPR) success rates (P = .01) but not knowledge of CPR (P = .2). There was no evidence that the intervention resulted in more anxious or depressive symptoms. Caregivers experienced less burden in terms of disruption to schedule if the patient received the intervention (P = .05). CONCLUSION: An intervention, consisting of an informational pamphlet and discussion, was associated with earlier placement of DNR orders relative to death and less likelihood of death in hospital. There was no negative impact of the intervention on secondary outcomes, although the sample may have been too small to detect differences.

Cancer-related fatigue in women with breast cancer: outcomes of a 5-year prospective cohort study.

PURPOSE: Prolonged and disabling fatigue is prevalent after cancer treatment, but the early natural history of cancer-related fatigue (CRF) has not been systematically examined to document consistent presence of symptoms. Hence, relationships to cancer, surgery, and adjuvant therapy are unclear. PATIENTS AND METHODS: A prospective cohort study of women receiving adjuvant treatment for early-stage breast cancer was conducted. Women (n = 218) were enrolled after surgery and observed at end treatment and at 1, 3, 6, 9, and 12 months as well as 5 years. Structured interviews and self-report questionnaires were used to record physical and psychologic health as well as disability and health care utilization. Patients with CRF persisting for 6 months were assessed to exclude alternative medical and psychiatric causes of fatigue. Predictors of persistent fatigue, mood disturbance, and health care utilization were sought by logistic regression. RESULTS: The case rate for CRF was 24% (n = 51) postsurgery and 31% (n = 69) at end of treatment; it became persistent in 11% (n = 24) at 6 months and 6% (n = 12) at 12 months. At each time point, approximately one third of the patients had comorbid mood disturbance. Persistent CRF was predicted by tumor size but not demographic, psychologic, surgical, or hematologic parameters. CRF was associated with significant disability and health care utilization. CONCLUSION: CRF is common but generally runs a self-limiting course. Much of the previously reported high rates of persistent CRF may be attributable to factors unrelated to the cancer or its treatment.

Follow up after breast cancer -- views of Australian women.

BACKGROUND: Survivorship care after breast cancer treatment is increasingly complex as it aims to manage the long term effects of cancer and its treatment, including psychosocial needs. While survivorship care is traditionally delivered by surgeons and specialist oncologists in Australia, general practitioners are ideally placed to manage these issues. METHODS: This study explored the attitudes of 20 breast cancer survivors to GP involvement in follow up care through semi-structured telephone interviews, which were analysed using qualitative methods. RESULTS: Women were reluctant to change from specialist based care but identified many potential benefits of GP involvement in long term cancer care. They expressed an interest in shared care programs between specialists and GPs. Some participants thought that additional training may be required if GPs were to deliver this care. CONCLUSION: This study shows cautious interest from breast cancer survivors for increasing GP involvement in follow up care. These views should be considered as alternative models of care are developed.

Pooled analysis of diarrhea events in patients with cancer treated with lapatinib.

PURPOSE: To characterize diarrhea events in patients with cancer treated with lapatinib as monotherapy or in combination with capecitabine or taxanes. PATIENTS AND METHODS: Eleven clinical trials (phase I, II, or III) in patients with metastatic cancer were analyzed. Lapatinib was administered at doses ranging from 1,000 to 1,500 mg/day as monotherapy (n = 926) or in combination with capecitabine (n = 198) or taxanes (n = 687). Diarrhea events were characterized based on severity, time to onset, duration, required interventions, and clinical outcomes. RESULTS: In the pooled analysis of nine studies, diarrhea occurred in 55% of lapatinib-treated patients and 24% of patients not receiving lapatinib. All grade diarrhea occurred in 51% of patients treated with lapatinib monotherapy and 65% treated with lapatinib plus capecitabine. In a separate analysis, 48% of patients treated with lapatinib plus a taxane experienced diarrhea. Overall, most diarrhea events were grade 1/2. Grade 3 events occurred in <10% of patients and grade 4 events were rare (