Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain. In this study, participants had many different views on the act itself, often divisive, but also with common concepts such as respecting the choices and decisions of others.

A qualitative study exploring challenges and solutions to negotiating goals of care at the end of life in hospital settings.

BACKGROUND: Negotiating goals of care (GoC) with patients is an essential skill for all health-care professionals (HCPs) in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth-funded project that delivers free, peer-reviewed, evidence-based, online education and practice change resources. To date, around 26 000 doctors, nurses and allied health professionals have registered to access the education. 'Planning End-of-Life Care-Goals of Care' features in the suite of EOLE modules and includes education around negotiating GoC with patients and families. OBJECTIVE: The aim of the study was to explore the views of module learners (HCPs) on challenges they have faced when negotiating GoC at the EOL with patients and families. METHODS: Participants were learners (HCPs) who registered to the EOLE website and engaged with the GoC module. Learners' responses to the question posed at the end of the module 'What are the hardest or most challenging things about negotiating GoC with patients and families?' were extracted for a 12-month period. Qualitative data were analysed thematically in NVivo V.12, guided by the theoretical framework of pragmatism. An open, inductive approach was used to code the data, with axial coding used to refine and organize themes and subthemes. RESULTS: A total of 451 learner statements were analysed. Five themes emerged from the data: (i) differing views and opinions; (ii) challenges to understanding; (iii) managing emotions; (iv) initiating the EOL conversation and (v) lack of professional knowledge or capacity. Five subthemes were also organized under the theme 'differing views and opinions'. CONCLUSION: Planning EOL care demands high-level, compassionately skilful and sensitive care and services, which are in line with the patient's and family's wishes. In practice, however, there are many challenges to this, such as ensuring that patients, families, and HCPs are aware of different expectations regarding future health-care possibilities, and that HCPs are prepared for negotiating GoC to achieve quality and safe EOL care in hospitals.

"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care.

Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professionals working in acute hospitals, including one on end-of-life care in pediatric settings. This study aimed to evaluate this module and explore learners' views on challenges faced when caring for a dying child and their family in a hospital setting. Learners comprised nurses, doctors, and allied health professionals. A quantitative pre-/post-evaluation analysis was conducted using learner data (n = 552) on knowledge and skills gained from engagement with the module, along with a qualitative thematic content analysis on learner responses (n = 395) to a post-evaluation free-text response question, between May 2019 and May 2020. Learners' post-evaluation ranks of perceived knowledge, skill, attitude, and confidence were significantly higher than pre-evaluation ranks (p < 0.001). Effect sizes were small to medium, ranging from 0.31 to 0.38 (95% confidence intervals from 0.23 to 0.45). Emerging themes from the qualitative data were dealing with emotions, and communicating effectively. This evaluation suggests that the Pediatrics module could be a useful online learning resource for health professionals. A planned longitudinal study will further investigate practice change.

Teams and continuity of end-of-life care in hospitals: managing differences of opinion.

BACKGROUND: Recognised as an essential element in end-of-life care by the Australian Commission on Safety and Quality in Health Care, effective teamwork can enhance the quality and safety of end-of-life care for patients in hospitals. End-of-Life Essentials (EOLE) is a Commonwealth funded project that delivers peer-reviewed, evidence-based, online education and practice change resources for doctors, nurses and allied health professionals working in hospitals. 'Teams and Continuity for the Patient' features in the suite of EOLE modules and includes education around effective teamwork in end-of-life care. The aim of this study was to explore the views of module learners on managing differences of opinion among staff regarding patient care management. METHODS: Participants were learners (health professionals) who registered to the EOLE website and engaged with the Teams module. Learner responses to a question posed at the end of the module 'How do you manage differences of opinion among staff regarding patient care management?' were extracted for a 12-month period. Qualitative data were analysed thematically in NVivo V.12, with pragmatism as an overarching theoretical framework. Data were coded using an inductive, open approach, and axial coding was used to organise the codes into themes and subthemes. FINDINGS: A total of 293 learner statements were analysed, with subthemes organised into three overarching themes: prioritising the patient, team collaboration and communication skills and emotional awareness. CONCLUSION: In complex, fast-paced, hospital environments, the potential for conflict among teams is high. Quality care relies on team members who work in unison, who can also recognise conflict emerging and respond in respectful and appropriate ways. In this study, the management actions reported by health professionals as proving helpful when differences of opinion among team members arise, are valuable to organisations who are considering how to prepare for quality and safety accreditation.

What is a compassionate response in the emergency department? Learner evaluation of an End-of-Life Essentials online education module.

OBJECTIVE: To evaluate the End-of-Life Essentials education module 'Emergency Department End-of-Life Care' and explore learners' views on what constitutes a compassionate response in the ED. METHODS: The present study used a multi-methods approach. Learners comprised a mix of nurses, doctors and allied health professionals. A quantitative pre-post evaluation analysis of learners' (n = 959) knowledge, skills, attitude and confidence was conducted, along with a qualitative thematic content analysis on learner responses (n = 538) to the post-evaluation question, 'What is a compassionate response for you in the emergency department?' Data were extracted for a 12-month period, 6 May 2019 to 6 May 2020. RESULTS: Learners' post-evaluation ranks of knowledge, skill, attitude and confidence were significantly higher than the pre-evaluation ranks (P < 0.001). Emerging themes from the qualitative data were organised into three overarching categories: communication skills (e.g. listening and use of names), care discussion and provision (e.g. provide information and discuss care plans) and humanising healthcare (e.g. emotional support and empathy, taking the time, and offering kindness and comfort). CONCLUSION: The 'Emergency Department End-of-Life Care' module had a significant positive impact on learners in relation to perceived knowledge, skill, attitude and confidence. This evaluation suggests that the End-of-Life Essentials ED module could be a useful online learning resource for health professionals.

"It's given me confidence": a pragmatic qualitative evaluation exploring the perceived benefits of online end-of-life education on clinical care.

BACKGROUND: Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many health professionals report they lack confidence to provide this care, particularly those in acute hospital settings. This study explored the perceived benefits of online education on health professionals' capacity to provide end-of-life care. METHODS: This qualitative study adopted a pragmatic approach. Thirty semi-structured interviews were conducted with allied health professionals, nurses and doctors who had completed a minimum of three End-of-Life Essentials online education modules. Interviews were held on line and face-to-face, audio-recorded and transcribed verbatim. Demographic data were also collected. Three major themes and one minor theme were constructed from the data using inductive thematic analysis. RESULTS: Themes were (1). Perceptions of preparedness to provide end-of-life care, (2). Shifts in approaching end-of-life discussions and (3). Motivation for engagement with online modules. Participants reported validation of knowledge and improved confidence to have end-of-life discussions with patients, carers and team members. They also noted improved ability to recognise the dying process and improved conversations with team members about patient and carer needs. Videos portraying a novice and then more able end-of-life discussions were particularly valued by participants. Modules provided practical guidance on how to engage in discussions about the end of life and care needs. Participants were self-motivated to improve their knowledge and skills to enhance end-of-life care provision. Continuing professional development requirements were also a motivator for module completion. CONCLUSIONS: This study explored health professionals' perspectives about the perceived benefits of online education modules on their clinical practice. Module completion enhanced participant confidence and self-reported improved competence in end-of-life care provision. Findings build on existing research that supports the valuable role online education plays in supporting confidence and ability to actively engage with patients, carers and colleagues about provision of end-of-life care; however, self-report cannot be used as a proxy for improved clinical competence.

Evaluation of an End-of-Life Essentials Online Education Module on Chronic Complex Illness End-of-Life Care.

Chronic complex illness/multimorbidity is a leading cause of death worldwide. Many people with chronic complex illnesses die in hospital, with the overall quality of end-of-life care requiring substantial improvement, necessitating an increase in the knowledge of the health professionals caring for them. End-of-Life-Essentials (EOLE) offers online education modules for health professionals working in acute hospitals, including one on chronic complex illness. A quantitative pre-post-evaluation analysis was undertaken on data from learners (n = 1489), who completed a questionnaire related to knowledge gained from module completion between December 2018 and November 2019. A qualitative post-evaluation analysis was also conducted using data on learner responses to a question posed between May and November 2019. Results showed a significant positive impact on learners' knowledge, skill, attitude, and confidence in providing end-of-life care to patients living with chronic complex illness. The majority (82.9%, n = 900) intended to change their practice after module completion. A total of n = 559 qualitative comments were analysed thematically, with three major themes emerging: Patient centred care and care planning, Discussion of prognosis, and Valued communication skills. This evaluation has demonstrated that healthcare professionals could benefit from this education to improve quality of care of the dying.

Understanding the Barriers and Enablers to Using Outdoor Spaces in Nursing Homes: A Systematic Review.

BACKGROUND AND OBJECTIVES: Despite acknowledged benefits of residents in nursing homes spending time outdoors, little is known about factors related to their use of outdoor space. This systematic review summarizes reported barriers and enablers to nursing home residents' use of outdoor spaces. RESEARCH DESIGN AND METHODS: Multiple databases were searched to May 2018. Qualitative or mixed methods studies describing barriers/enablers to use of outdoor areas by residents of nursing homes (aged 65 years and older), as reported by residents, staff, or family members were included. Study quality rating, thematic analysis, and stratified analyses were performed and confidence in findings assessed using GRADE-CERQual. RESULTS: Twenty-four studies were included. Nineteen collected data from residents, 15 from staff/caregivers, 7 from families. Major themes and key findings concerned: design of the outdoor area (importance of garden greenery and built features), safety concerns and staffing issues, weather and seasons (appropriate shade and shelter), design of the main building (easy to open doors and nearby access points) and social activities. CONCLUSIONS AND IMPLICATIONS: Providing gardens with seasonal plants and interactive features, weather protected seating, manageable doors at accessible thresholds, planned social activities, and appropriate clothing are fundamental to facilitate nursing home residents' access to the outdoors. Cultural change at an organizational level, addressing perceptions of safety as a barrier is important. Incorporation of the recommendations in this review by architects, facility managers, and policy makers in the design and management of nursing homes, may increase use of outdoor areas and improve the quality of life of residents. REGISTRATION: The protocol is registered in Prospero (CRD42018100249).

An evaluation of behaviour change techniques in health and lifestyle mobile applications.

Despite the current popularity and potential use of mobile applications (apps) in the area of behaviour change, health promotion, and well-being for young people, it is unclear whether their design is underpinned by theory-based behaviour change techniques. Understanding the design of these apps may improve the way they can be used to support young people's well-being.The objectives of this study were to investigate what behaviour change techniques are included in the content of health and lifestyle apps, and determine which of these are prominent in app design. Thirty of the top-listed health and lifestyle apps across three categories (physical activity, diet, and sleep) were freely downloaded from the two most popular app stores (GooglePlay™ and AppStore™). Selected apps were used by trained researchers and the features identified coded against the Behaviour Change Techniques Taxonomy 1, a systematic classification of techniques used in behaviour change interventions. It was found that 9 of the 93 behaviour change techniques listed in the Behaviour Change Techniques Taxonomy 1 were common across the chosen health and lifestyle apps. The app found to include the most behaviour change techniques had 20 (21%), while the app found to include the least had 1 behaviour change technique (1%). The most frequently used behaviour change techniques were related to goal setting and feedback. Entire categories in the Behaviour Change Techniques Taxonomy 1 were absent in the design of the selected apps.

Designing Online Interventions in Consideration of Young People's Concepts of Well-Being: Exploratory Qualitative Study.

BACKGROUND: A key challenge in developing online well-being interventions for young people is to ensure that they are based on theory and reflect adolescent concepts of well-being. OBJECTIVE: This exploratory qualitative study aimed to understand young people's concepts of well-being in Australia. METHODS: Data were collected via workshops at five sites across rural and metropolitan sites with 37 young people from 15 to 21 years of age, inclusive. Inductive, data-driven coding was then used to analyze transcripts and artifacts (ie, written or image data). RESULTS: Young adults' conceptions of well-being were diverse, personally contextualized, and shaped by ongoing individual experiences related to physical and mental health, along with ecological accounts acknowledging the role of family, community, and social factors. Key emerging themes were (1) positive emotions and enjoyable activities, (2) physical wellness, (3) relationships and social connectedness, (4) autonomy and control, (5) goals and purpose, (6) being engaged and challenged, and (7) self-esteem and confidence. Participants had no difficulty describing actions that led to positive well-being; however, they only considered their own well-being at times of stress. CONCLUSIONS: In this study, young people appeared to think mostly about their well-being at times of stress. The challenge for online interventions is to encourage young people to monitor well-being prior to it becoming compromised. A more proactive focus that links the overall concept of well-being to everyday, concrete actions and activities young people engage in, and that encourages the creation of routine good habits, may lead to better outcomes from online well-being interventions.

Efficacy of a Web-Based Guided Recommendation Service for a Curated List of Readily Available Mental Health and Well-Being Mobile Apps for Young People: Randomized Controlled Trial.

BACKGROUND: Mental disorders are highly prevalent for the people who are aged between 16 and 25 years and can permanently disrupt the development of these individuals. Easily available mobile health (mHealth) apps for mobile phones have great potential for the prevention and early intervention of mental disorders in young adults, but interventions are required that can help individuals to both identify high-quality mobile apps and use them to change health and lifestyle behavior. OBJECTIVES: The study aimed to assess the efficacy of a Web-based self-guided app recommendation service ("The Toolbox") in improving the well-being of young Australians aged between 16 and 25 years. The intervention was developed in collaboration with young adults and consists of a curated list of 46 readily available health and well-being apps, assessed and rated by professionals and young people. Participants are guided by an interactive quiz and subsequently receive recommendations for particular apps to download and use based on their personal goals. METHODS: The study was a waitlist, parallel-arm, randomized controlled trial. Our primary outcome measure was change in well-being as measured by the Mental Health Continuum-Short Form (MHC-SF). We also employed ecological momentary assessments (EMAs) to track mood, energy, rest, and sleep. Participants were recruited from the general Australian population, via several Web-based and community strategies. The study was conducted through a Web-based platform consisting of a landing Web page and capabilities to administer study measures at different time points. Web-based measurements were self-assessed at baseline and 4 weeks, and EMAs were collected repeatedly at regular weekly intervals or ad hoc when participants interacted with the study platform. Primary outcomes were analyzed using linear mixed-models and intention-to-treat (ITT) analysis. RESULTS: A total of 387 participants completed baseline scores and were randomized into the trial. Results demonstrated no significant effect of "The Toolbox" intervention on participant well-being at 4 weeks compared with the control group (P=.66). There were also no significant differences between the intervention and control groups at 4 weeks on any of the subscales of the MHC-SF (psychological: P=.95, social: P=.42, emotional: P=.95). Repeat engagement with the study platform resulted in a significant difference in mood, energy, rest, and sleep trajectories between intervention and control groups as measured by EMAs (P<.01). CONCLUSIONS: This was the first study to assess the effectiveness of a Web-based well-being intervention in a sample of young adults. The design of the intervention utilized expert rating of existing apps and end-user codesign approaches resulting in an app recommendation service. Our finding suggests that recommended readily available mental health and well-being apps may not lead to improvements in the well-being of a nonclinical sample of young people, but might halt a decline in mood, energy, rest, and sleep. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12614000710628; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366145 (Archived by WebCite at http://www.webcitation.org/ 6pWDsnKme).

People, processes, and systems: An observational study of the role of technology in rural youth mental health services.

The merits of technology-based mental health service reform have been widely debated among academics, practitioners, and policy makers. The design of new technologies must first be predicated on a detailed appreciation of how the mental health system works before it can be improved or changed through the introduction of new products and services. Further work is required to better understand the nature of face-to-face mental health work and to translate this knowledge to computer scientists and system designers responsible for creating technology-based solutions. Intensive observation of day-to-day work within two rural youth mental health services in South Australia, Australia, was undertaken to understand how technology could be designed and implemented to enhance young people's engagement with services and improve their experience of help seeking. Data were analysed through a lens of complexity theory. Results highlight the variety of professional roles and services that can comprise the mental health system. The level of interconnectedness evident in the system contrasted with high levels of service self-organization and disjointed information flow. A mental health professional's work was guided by two main constructs: risk and engagement. Most clients presented with a profile of disability, disadvantage, and isolation, so complex client presentations and decision-making were core practices. Clients (and frequently, their families) engaged with services in a crisis-dependent manner, characterized by multiple disengagements and re-engagements over time. While significant opportunities exist to integrate technology into existing youth mental health services, technologies for this space must be usable for a broad range of medical, psychological and cognitive disability, social disadvantage, and accommodate repeat cycles of engagement/disengagement over time.

The promise and the reality: a mental health workforce perspective on technology-enhanced youth mental health service delivery.

BACKGROUND: Digital technologies show promise for reversing poor engagement of youth (16-24 years) with mental health services. In particular, mobile and internet based applications with communication capabilities can augment face-to-face mental health service provision. The literature in this field, however, fails to adequately capture the perspectives of the youth mental health workforce regarding utility and acceptability of technology for this purpose. METHODS: This paper describes results of in-depth qualitative data drawn from various stakeholders involved in provision of youth mental health services in one Australian rural region. Data were obtained using focus groups and semi-structured interviews with regional youth mental health clinicians, youth workers and support/management staff (n = 4 focus groups; n = 8 interviews) and analysed via inductive thematic analysis. RESULTS: Results question the acceptability of technology to engage clients within youth mental health services. Six main themes were identified: young people in a digital age, personal connection, power and vulnerability, professional identity, individual factors and organisational legitimacy. CONCLUSIONS: These findings deepen the understanding of risks and challenges faced when adopting new technologies in mental healthcare. Recommendations for technology design and implementation in mental health services are made.

Paid and Unpaid Online Recruitment for Health Interventions in Young Adults.

PURPOSE: There is a growing need to identify new and innovative approaches to recruit representative samples of young adults in health intervention research. The current study used a data set of screening information from an online well-being intervention trial of young adults, to investigate cost-effectiveness of different recruitment strategies and whether the clinical and demographic characteristics of participants differed depending on paid or unpaid online recruitment sources. METHODS: Data were collected from 334 18- to 25-year-old Australians. The study was advertised through a variety of paid and unpaid online recruitment channels (e.g., Google, Facebook, Twitter, YouTube, recruitment agency), with response rates to different recruitment channels tracked using unique Web links. Well-being of participants was measured using the Mental Health Continuum Short Form. Analyses consisted of independent t tests and χ2 tests. RESULTS: Overall, unpaid recruitment channels had a considerably higher yield than paid recruitment channels. Of paid recruitment channels, a recruitment agency and paid Facebook advertisements attracted the largest number of individuals. This study also found differences between paid and unpaid online recruitment channels with regard to the well-being and mood of participants. CONCLUSIONS: Although the success of online recruitment channels is likely subject to a complex interplay between the number of exposures, the targeted sample, the wording, and placement of the advertisement, as well as study characteristics, our study demonstrated that unpaid recruitment channels are more effective than paid channels and that paid and unpaid channels may result in samples with different characteristics.

Development of an online well-being intervention for young people: an evaluation protocol.

BACKGROUND: Research has shown that improving well-being using positive mental health interventions can be useful for predicting and preventing mental illness. Implementing online interventions may be an effective way to reach young people, given their familiarity with technology. OBJECTIVE: This study will assess the effectiveness of a website called the "Online Wellbeing Centre (OWC)," designed for the support and improvement of mental health and well-being in young Australians aged between 16 and 25 years. As the active component of the study, the OWC will introduce a self-guided app recommendation service called "The Toolbox: The best apps for your brain and body" developed by ReachOut.com. The Toolbox is a responsive website that serves as a personalized, ongoing recommendation service for technology-based tools and apps to improve well-being. It allows users to personalize their experience according to their individual needs. METHODS: This study will be a two-arm, randomized controlled trial following a wait-list control design. The primary outcome will be changes in psychological well-being measured by the Mental Health Continuum Short Form. The secondary outcomes will be drawn from a subsample of participants and will include depression scores measured by the Center for Epidemiologic Studies Depression Scale, and quality of life measured by the Assessment of Quality of Life-four dimensions (AQOL-4D) index. Cost-effectiveness analysis will be conducted based on a primary outcome of cost per unique visit to the OWC. Utility-based outcomes will also be incorporated into the analysis allowing a secondary outcome to be cost per quality-adjusted life year gained (based on the AQOL-4D values). Resource use associated with both the intervention and control groups will be collected using a customized questionnaire. Online- and community-based recruitment strategies will be implemented, and the effectiveness of each approach will be analyzed. Participants will be recruited from the general Australian population and randomized online. The trial will last for 4 weeks. RESULTS: Small but clinically significant increases in well-being symptoms are expected to be detected in the intervention group compared with the control group. CONCLUSIONS: If this intervention proves to be effective, it will have an impact on the future design and implementation of online-based well-being interventions as a valid and cost-effective way to support mental health clinical treatment. Findings regarding recruitment effectiveness will also contribute to developing better ways to engage this population in research. CLINICALTRIAL: This study is registered in the Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12614000710628.

Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions.

BACKGROUND: Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth. OBJECTIVE: To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth. METHODS: Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis. RESULTS: A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation. CONCLUSIONS: Consumer consultations helped shape intervention design. However, with little evidence of outcomes and a lack of implementation following piloting, the value of participatory research remains unclear.