Secondary use of genomic data: patients' decisions at point of testing and perspectives to inform international data sharing.

International sharing of genomic data files arising from clinical testing of patients is essential to further improve genomic medicine. Whilst the general public are reluctant to donate DNA for research, the choices patients actually make about sharing their clinical genomic data for future re-use (research or clinical) are unknown. We ascertained the data-sharing choices of 1515 patients having genomic testing for inherited conditions or cancer treatment from clinical consent forms. To understand the experiences and preferences of these patients, surveys were administered after test consent (RR 73%). Almost all patients (98%) consented to share their data. Survey respondents' decision recall was high (90%), but poorer if English was an additional language (p < 0.001). Parents deciding on behalf of children were over-represented amongst data-sharing decliners (p = 0.047) and decliners were more likely to believe that stored data could be easily reidentified (p < 0.001). A quarter of respondents did not know if reidentification would be easy and 44% of them were concerned about this possibility. Of those willing to share data overseas (60%), 23% indicated the recipient researcher's country would affect their decision. Most respondents (89%) desired some ongoing control over research use of their data. Four preliminary data-sharing profiles emerged; their further development could inform tailored patient resources. Our results highlight considerations for establishment of systems to make clinical genomic data files available for reanalysis locally and across borders. Patients' willingness to share their data - and value of the resulting research - should encourage clinical laboratories to consider sharing data systematically for secondary uses.

Evaluation of a two-step model of opportunistic genomic screening.

Increasing use of diagnostic genomic sequencing is pushing health services to confront the issue of opportunistic genomic screening (OGS). To date, OGS has been offered concomitant with diagnostic testing. In contrast, we piloted a service offering OGS after return of diagnostic testing results. Evaluation was designed to provide insights for future models of service and included patient surveys at three time points, semi-structured interviews with genetic counsellors (GCs) and a focus group with medical scientists. Uptake was relatively low: 83 of 200 patients approached (42%) attended the OGS service, with 81 accepting OGS. Whilst many who declined to attend the service cited practical barriers, others gave reasons that indicated this was a considered decision. Despite specific genetic counselling, one third of patients did not understand the scope of re-analysis. Yet after post-test counselling, all respondents with novel pathogenic additional findings (AF) understood the implications and reported relevant follow-up. Recall was high: five months after last contact, 75% recalled being offered OGS without prompting. GC interviews and patient survey responses provide insights into complexities that influence patient support needs, including diagnostic status and AF result type. There was no consensus among patients or professionals about when to offer OGS. There was a clear preference for multiple, flexible methods of information provision; achieving this whilst balancing patient support needs and resource requirements is a challenge requiring further investigation. Decisions about whether, when and how to offer OGS are complex; our study shows the two-step approach warrants further exploration.

Embedding telehealth for sustainable health services linking Oceania.

The expansion of telehealth during the COVID-19 pandemic can be further adapted and extended to align with principles of climate justice. We argue that high-emission countries with well-developed medical systems, like Australia, should support communities disproportionately impacted by climate change who request assistance, like in small island states of Oceania. Linking health services in small island states with neighbouring countries' medical systems can support sustainability, if such reconfigurations are appropriately resourced and accessibility is prioritized. Investments in telehealth, particularly reconfiguring services through community-led linkages with larger medical systems, supports the sustainable development goal of universal access to healthcare.

Accessing hearing-health services for deaf and hard-of-hearing children during the COVID-19 pandemic: Parent and child perspectives.

To describe hearing-health service use, especially use of telehealth, during the early stages of the COVID-19 pandemic in deaf/hard-of-hearing children. In 2020, the Victorian Childhood Hearing Longitudinal Databank surveyed 497 (61.6%) families of deaf/hard-of-hearing children aged 0.4-19.6 years, with 449 (90.3%) providing quantitative data and 336 (67.6%) providing free-text comments about COVID-19's impact on service use and access. We summarised quantitative data using descriptive statistics and analysed free-text responses using inductive and deductive reasoning. Of the 1152 services families used during the pandemic, 711 (62%) were accessed via telehealth. Parents reported several challenges and facilitators of service access during the pandemic, particularly regarding telehealth. Parents reported that their child found telehealth appointments more difficult (347/665, 52.1%) and of worse quality (363/649, 55.9%) compared to in-person. These difficulties were more evident in pre-school than school-age children. Consideration of these factors when implementing telehealth practice beyond the pandemic would improve family experiences, ensuring quality of care.

Perceived benefits of accessing a children’s sensory garden in a healthcare setting.

Objectives This pilot study aimed to explore the perceived benefits of a new children's sensory garden in a healthcare centre in south-eastern Melbourne that provides specialised care, support and guidance to parents. Methods A mixed-method research design was employed in this study comprising a combination of quantitative (surveys) and qualitative (interviews) data collection methods. A total of 19 staff and 36 parents completed surveys relating to their experiences in the new garden. Results The staff members and parents surveyed were found to use the new children's garden on a regular basis and suggested that the new garden provided them with an opportunity to escape and feel calmer and had positively impacted on their interactions with their child. Interviews were also undertaken with four staff members who indicated that they believe the new garden is affording them perceived personal wellbeing benefits and that the activities in the new garden led to better perceived outcomes for families. Conclusion The perceived benefits reported provide support for the development of sensory gardens at other similar healthcare facilities.

Accessing Green Spaces Within a Healthcare Setting: A Mixed Studies Review of Barriers and Facilitators.

This review describes the facilitators and barriers impacting on passive access to green spaces within healthcare settings. A systematic mixed-studies review was undertaken to review the quantitative and qualitative evidence on access to green spaces within healthcare settings, as well as to review the methodological quality of the studies eligible for inclusion. A total of 24 articles met the inclusion criteria and were included in the review. The barriers to access were grouped into three themes: "awareness," "accessibility," and "comfort." The facilitators were grouped into 13 themes: "flora and foliage," "views," "water features," "sun, rain, fresh air, wind," "animal life," "diverse textures, heights, shapes," "lawn," "natural versus artificial material," "rest areas," "shade," "private areas," "play equipment," and "safety." These findings can be explained through multiple lenses, using existing theories on contact with nature and supportive garden design. In an era of elevated stress, patient admissions, and staff turnover in hospitals, and rising costs of providing healthcare services, the creation of settings conducive to health promotion, stress reduction, and faster recovery is relevant and timely. This article, which has collated over three decades of research evidence, is invaluable in addressing this issue.

Feel blue, touch green: examples of green spaces promoting mental health.

The design of hospital environments with an increased focus on incorporating nature and natural features has been reported to have multiple health and well-being benefits. This paper reports on three Australian case studies that each investigated the relationship between green spaces and people's mental health. The results suggest that gardens or other green spaces should be included within plans for future healthcare design. While we acknowledge that there are a range of considerations in the allocation of healthcare resources and programmes for maximum benefit, we believe that those programmes which highlight the beneficial outcomes for people with mental illness of 'feeling blue and touching green' are worth implementing.

Questioning skills of clinical facilitators supporting undergraduate nursing students.

AIMS AND OBJECTIVES: To report on a study investigating questioning skills of clinical facilitators who support the learning of undergraduate nursing students. BACKGROUND: The ability to think critically is integral to decision-making and the provision of safe and quality patient care. Developing students' critical thinking skills is expected of those who supervise and facilitate student learning in the clinical setting. Models used to facilitate student learning in the clinical setting have changed over the years with clinicians having dual responsibility for patient care and facilitating student learning. Many of these nurses have no preparation for the educative role. This study adapted a comparative study conducted over fifteen years ago. DESIGN: Descriptive online survey including three acute care patient scenarios involving an undergraduate nursing student. Participants were required to identify the questions they would ask the student in relation to the scenario. METHODS: A total of 133 clinical facilitators including clinical teachers, clinical educators and preceptors from five large partner healthcare organisations of one Australian university participated. RESULTS: The majority of questions asked were knowledge questions, the lowest category in the cognitive domain requiring only simple recall of information. Facilitators who had undertaken an education-related course/workshop or formal qualification asked significantly more questions from the higher cognitive level. CONCLUSION: The study provides some evidence that nursing facilitators in the clinical setting ask students predominantly low-level questions. Further research is needed to identify strategies that develop the capacity of facilitators to ask higher level cognitive questions. RELEVANCE TO CLINICAL PRACTICE: Clinical facilitators should undertake targeted education that focuses on how to frame questions for students that demand application, analysis, synthesis and evaluation.

Optimising Health Literacy and Access of Service Provision to Community Dwelling Older People with Diabetes Receiving Home Nursing Support.

Background. Health literacy is the ability to access, understand, and use information and services for good health. Among people with chronic conditions, health literacy requirements for effective self-management are high. The Optimising Health Literacy and Access (Ophelia) study engaged diverse organisations in the codesign of interventions involving the Health Literacy Questionnaire (HLQ) needs assessment, followed by development and evaluation of interventions addressing identified needs. This study reports the process and outcomes of one of the nine organisations, the Royal District Nursing Service (RDNS). Methods. Participants were home nursing clients with diabetes. The intervention included tailored diabetes self-management education according to preferred learning style, a standardised diabetes education tool, resources, and teach-back method. Results. Needs analysis of 113 quota-sampled clients showed difficulties managing health and finding and appraising health information. The service-wide diabetes education intervention was applied to 24 clients. The intervention was well received by clients and nurses. Positive impacts on clients' diabetes knowledge and behaviour were seen and nurses reported clear benefits to their practice. Conclusion. A structured method that supports healthcare services to codesign interventions that respond to the health literacy needs of their clients can lead to evidence-informed, sustainable practice changes that support clients to better understand effective diabetes self-management.