From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement.

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers.

Approaches for improving sexuality and sexual health care in mental health settings: A qualitative study exploring clinicians' own perspectives.

There is an acknowledged professional practice gap regarding sexuality and sexual health related needs within mental health settings in Australia and internationally. Yet little is known about how clinicians can be best supported or enabled to improve sexuality-related practice, from their own perspective. This is important, given the sensitive and complex nature of sexuality and sexual health within the context of mental distress and service provision. This article reports a follow-up study, where mental health clinicians who participated in an initial study were invited to reflect on and discuss the (finalized) results and recommendations generated. The aim was to generate insights into the tools, strategies, and approaches participants felt would best equip and support clinicians to better incorporate sexuality and sexual health into their work. Six clinicians from three disciplines (mental health nursing, psychology, and psychiatry) participated in in-depth interviews to reflect on a plain language summary of the initial study. Three interconnected themes were generated via reflexive thematic analysis: (1) access to knowledge and information; (2) support from peers, senior colleagues, and workplaces; and (3) enacting a focus on sexuality-related care. These findings provide valuable insights into how clinicians may want to be supported in relation to (improving) their sexuality-related practice. The analysis also demonstrates the importance of a multifaceted approach to improving sexuality-related care in mental health and other health settings. This knowledge will contribute to directing future research and development of interventions, tools, strategies, or other approaches to this end.

Maintaining High-Touch in High-Tech Digital Health Monitoring and Multi-Omics Prognostication: Ethical, Equity, and Societal Considerations in Precision Health for Palliative Care.

Advances in digital health, systems biology, environmental monitoring, and artificial intelligence (AI) continue to revolutionize health care, ushering a precision health future. More than disease treatment and prevention, precision health aims at maintaining good health throughout the lifespan. However, how can precision health impact care for people with a terminal or life-limiting condition? We examine here the ethical, equity, and societal/relational implications of two precision health modalities, (1) integrated systems biology/multi-omics analysis for disease prognostication and (2) digital health technologies for health status monitoring and communication. We focus on three main ethical and societal considerations: benefits and risks associated with integration of these modalities into the palliative care system; inclusion of underrepresented and marginalized groups in technology development and deployment; and the impact of high-tech modalities on palliative care's highly personalized and "high-touch" practice. We conclude with 10 recommendations for ensuring that precision health technologies, such as multi-omics prognostication and digital health monitoring, for palliative care are developed, tested, and implemented ethically, inclusively, and equitably.

"We were all looking for the magic pill": A qualitative study of patient experiences using gabapentinoids for chronic pain.

BACKGROUND: Gabapentinoid medications are increasingly being used in chronic pain management, yet very little is known about the experiences of those using them. The aim of this study was to address this gap in the literature by qualitatively exploring the lived experiences of patients using gabapentinoids for chronic pain. METHODS: Semi-structured interviews were conducted with 12 adults prescribed a gabapentinoid medication - either pregabalin or gabapentin - for chronic pain in Australia. Interviews were conducted in May 2022 via telephone or online video chat. Audio recordings of the interviews were transcribed verbatim, and data were analysed using reflexive thematic analysis. The Medication Adherence Model was used as a framework for synthesising the data and organising themes. RESULTS: For participants in this study, the initial decision to use gabapentinoids for chronic pain was driven by a level of desperation for pain relief, a perceived lack of pain management alternatives, and a belief that the medication was safer and easier to access than opioids. However, once using gabapentinoids, experiences varied considerably with some viewing the medication as effective and safe, and others viewing it as useless or harmful. Some participants expressed concern that they were not adequately informed by their prescribers about the risks of gabapentinoid use. CONCLUSION: These findings emphasise the importance of patient-provider communication and taking a patient-centred approach to gabapentinoid prescribing and de-prescribing. Future qualitative research in this area should involve primary care providers to gain a better understanding of factors driving increased gabapentinoid prescribing in chronic pain management as well as barriers to patient education.

Nurse-Led Physical Health Interventions for People with Mental Illness: A Scoping Review of International Literature.

People with mental illness have a higher prevalence of co-occurring physical health conditions and poor health behaviors, leading a mortality gap of up to 16 years, compared with the general population. Nurses working in mental health settings play an important role in addressing factors influencing sub-optimal physical health. Therefore, this scoping review aimed to identify nurse-led physical health interventions and align interventions to eight recognized physical healthcare priority areas (i.e. Equally Well in Victoria Framework). A systematic search strategy was used to identify relevant literature. Data extraction included alignment to the Equally Well priority areas, research design, and indication of co-design (meaningful and collaborative involvement of consumers and significant others) and recovery-oriented practice (focusing on needs and goals of a consumer's recovery journey). All included papers (n = 74) were aligned to at least one of eight Equally Well priority areas. Papers were predominately quantitative (n = 64, 86%), with the remainder mixed methods (n = 9, 9%) or qualitative (n = 4, 5%). Most papers were aligned to improving metabolic health and support to quit smoking. One study focused on nurse-led intervention designed to reduce falls. Recovery-oriented practice was evident in six papers. No paper described evidence of co-design. A research gap was identified for nurse-led intervention to reduce falls and improve dental/oral care. Relative to mental healthcare policy, there is a need for future nurse-led physical health research to be co-designed and include recovery-oriented practice. Evaluation and description of future nurse-led physical interventions should seek to report perspectives of key stakeholders as these remain relatively unknown.

Mapping young people's journeys through mental health services: A prospective longitudinal qualitative study protocol.

Mental ill health is a major health risk for young people. There is unmet need for mental health assessment and treatment across Australia despite significant investment in government-funded plans to cover mental health and youth-oriented services. Understandings of mental health care for young people are impeded by a lack of longitudinal research. Without this research, it is difficult to understand how services do or do not support the recovery of young people over time. This project will analyse the healthcare journeys of young people aged 16-25 years experiencing their first episode of mental ill health for which they have sought GP support, over 12 months in the Australian Capital Territory. The study team will recruit up to 25 diverse young people and their general practitioners (GPs), and conduct four qualitative semi-structured interviews over 12 months with each participant. GP interviews will explore their role in the mental health care and care coordination for the young person. Interviews with young people will explore experiences and perceptions of navigating the health system, and the supports and resources they engaged with during the 12-month period. In between interviews, young people will be asked to keep a record of their mental health care experiences, through their choice of media. Participant-produced materials will also form the basis for interviews, providing stimuli to discuss the lived experience of care. Through analysing the narratives of both young people and their GPs, the study will establish how young people understand value in mental health care delivery. The study will use longitudinal qualitative mapping of healthcare journeys to identify key barriers and enablers to establishing effective, person-centred health care for young people with mental ill health.

Factors of emotional distress in lymphoma: A systematic review.

OBJECTIVE: Distress is prevalent among lymphoma patients/survivors. Current processes of distress identification rely on self-reporting by patients/survivors, which may be limited by their willingness to report symptoms. To help identify patients/survivors at greater risk, this systematic review aims to comprehensively review factors that may contribute to distress in lymphoma patients/survivors. METHODS: PubMed was systematically searched for peer-reviewed primary articles (1997-2022) consisting of standardised keywords "lymphoma" and "distress." Information from 41 articles was integrated via narrative synthesis. RESULTS: Consistent risk factors of distress include younger age, relapsed disease, and greater comorbidities and symptom burden. Active treatment and the transition from treatment to post-treatment could be challenging phases. Adequate social support, adaptive adjustment to cancer, engaging in work and healthcare professionals' support may mitigate distress. There is some evidence that older age may be associated with greater depression and life changes/experiences may shape how individuals cope with lymphoma. Gender and marital status were not robust predictors of distress. Other clinical, psychological and socioeconomic factors are understudied or have mixed findings. CONCLUSIONS: While several factors of distress align with that of other cancers, more research is needed to identify significant factors of distress in lymphoma patients/survivors. The identified factors may support clinicians in identifying distressed lymphoma patients/survivors and providing interventions where necessary. The review also highlights avenues for future research and a need to routinely collect data on distress and its factors in registries.

Using photovoice to explore Bolivian children's experiences of COVID-19.

Our capacity to facilitate the empowerment of children is dependent on our ability to understand their values and experiences. This study aimed to explore Bolivian children's experiences of COVID-19. This study used a participatory action research method, photovoice, which involved focus groups, individual interviews and the use of cameras by participants to capture their reality and express their ideas through photographs. Ten participants aged 12-15 years were recruited from a school in the municipality of Mecapaca in Bolivia. Thematic analysis was used to identify and report response patterns. Four themes were developed through analysis: (i) sadness and fear of getting sick, (ii) the challenges of online learning, (iii) the tension between traditional knowledge and modern medicine, and (iv) the role of nature and culture in supporting well-being-natural and cultural capital. The narratives and choice of images by the children illustrate some issues and experiences. These findings also highlighted the importance of considering and exploring how children's experiences and interactions with their habitat, nature and their physical environment impacts on their health and well-being.

"I can't make all this work." End of life care provision in natural disasters: a qualitative study.

BACKGROUND: Natural disasters are becoming more frequent and severe and profoundly impact the end-of-life care experience, including service provision. There is a paucity of research examining healthcare workers' experiences in responding to care demands when disasters strike. This research aimed to fill this gap by exploring end-of-life care providers' perceptions of the impact of natural disasters on end-of-life care. METHODS: Between Feb 2021-June 2021 ten in-depth semi-structured interviews were conducted with healthcare professionals providing end-of-life care during recent natural disasters, COVID-19, and/or fires and floods. Interviews were audio-recorded, transcribed, and analysed using a hybrid inductive and deductive thematic approach. RESULTS: The overarching theme from the healthcare workers' accounts was of being unable to provide effective compassionate and quality care - "I can't make all this work." They spoke of the considerable burdens the system imposed on them, of being overextended and overwhelmed, having their roles overturned, and losing the human element of care for those at end-of-life. CONCLUSION: There is urgent need to pioneer effective solutions to minimise the distress of healthcare professionals in delivering end-of-life care in disaster contexts, and to improve the experience of those dying.

'They don't really know why they're here' mental health professionals' perspectives of consumer representatives.

There are several barriers to meaningful, non-tokenistic consumer representation in mental health, including stigma and negative attitudes towards consumers. The aim of this study was to examine mental health professionals' perspectives about collaborating with consumer representatives. Semi-structured interviews were conducted with 11 mental health professionals across Australia. Informed by the social identity framework, the findings are discussed in relation to the themes of (1) the need for greater clarity about the roles of consumer representatives, (2) perceptions about whether consumer representatives are held to equal professional standards, (3) understandings of consumers' place in organizational hierarchies, (4) facilitating more meaningful collaboration between consumer representatives and non-consumer health professionals and (5) the blurring of these identities when mental health professionals have lived experience. Findings suggest that the social identities of mental health consumer representatives (along with their organizational roles) are often unclear and need development within healthcare organizations. Leaders can provide guidance on group boundaries to enable effective collaboration. The implications for healthcare organizations and policy include the provision of clear frameworks for collaborative mental healthcare and clear roles, terminology and responsibilities for mental health consumer representatives.

"It Breaks the Ice": A Qualitative Examination of Drinking Game Motives, Harms and Protective Behavioral Strategies among University Students in Australia.

Background: Most research on drinking games (DG) behaviors and cognitions has been conducted among university students from the United States. Understanding why DGs are played, consequences and protective behavioral strategies (PBS) to reduce negative consequences is needed among Australian students. Objectives: In Australia, five focus groups (n=3-8) were held with 27 university students (63% female) aged 18-24 years who had played a DG in the past month. The study aimed to identify motives for playing DGs, consequences and adoption of PBS. Results: Four themes were identified: (1) social lubrication and conformity: playing to fit in; (2) community and camaraderie (perceived social benefits of DGs); (3) a means to an end (where getting drunk/predrinking was the goal and avoidance of PBS was prevalent); and (4) it is not a levelled playing field, which highlights that the risks are not equal for everyone. Conclusions: The interplay between DG motives, PBS and associated harms was identified. Expanding measurement of pre-existing DG motives and PBS is recommended, as well as the potential of DG motives to inform proposed interventions.

Qualitative Story Completion: Opportunities and Considerations for Health Research.

Qualitative story completion (QSC) is an innovative research method that offers researchers a range of unique opportunities for generating and analysing data. Participants are asked to write a 'story' in response to a hypothetical 'story stem', often in the third-person and involving fictional characters, rather than reporting on their direct experiences. QSC is being developed and increasingly taken up by researchers working across a range of fields; but it has been little used in health research, especially in the fields of nursing, health services research, medicine, and allied health. This means that health researchers have few examples to draw on when considering what QSC can offer them and how to rigorously design, conduct, and report a QSC study within health-related fields. We aim to address this gap and contribute to existing QSC literature by promoting increased use of QSC by health researchers and supporting them to produce rigorous QSC research. We outline three case examples illustrating how we have used QSC to conduct multidisciplinary health research relevant to nursing, medicine and nutrition. Drawing on these case examples, we reflect on challenges that we encountered, describe decision-making processes, and offer recommendations for conducting rigorous health research using QSC.

End-of-life care in natural disasters including epidemics and pandemics: a systematic review.

BACKGROUND: Natural disasters are becoming more frequent and severe, and place additional strains on end-of-life care services and users. Although end-of-life and palliative care are considered essential components of disaster planning and response, there are gaps in understandings about their real-life application, and how natural disasters impact end-of-life care. OBJECTIVE: To synthesise existing evidence of the impacts of natural disasters (eg, bushfires, communicable pandemics, etc) on end-of-life care. METHODS: A systematic review with a narrative synthesis was undertaken. The review was registered on PROSPERO (registration: CRD42020176319). PubMed, Scopus, PsycINFO, Science Direct and Web of Science were searched for studies published in English between 2003 and 2020, with findings explicitly mentioning end-of-life care impacts in relation to a natural disaster. Articles were appraised for quality using a JBI-QARI tool. RESULTS: Thirty-six empirical studies met the inclusion criteria and quality assessment. Findings were synthesised into three key themes: impacts on service provision, impacts on service providers and impacts on service users. This review demonstrates that natural disasters impact profoundly on end-of-life care, representing a stark departure from a palliative care approach. CONCLUSIONS: Clinical practitioners, policy makers and researchers must continue to collaborate for viable solutions to achieve universal access to compassionate and respectful end-of-life care, during natural disasters. Using models, policies and practices already developed in palliative care, involving those most impacted in disaster planning and anticipating barriers, such as resource shortages, enables development of end-of-life care policies and practices that can be rapidly implemented during natural disasters.

The "affected" pharmacist and the "business as usual" pharmacist: Exploring the experiences of pharmacists during COVID-19 through cluster analysis.

BACKGROUND: The global coronavirus disease 2019 (COVID-19) pandemic has necessitated considerable changes in the delivery of pharmacy services, with pharmacists experiencing increasing demands and a high rate of burnout. The ability to categorize pharmacists based on their burnout risk and associated factors could be used to tailor burnout interventions. OBJECTIVE: This study aimed to identify subgroups (profiles) of pharmacists and use these profiles to describe interventions tailored to improve pharmacist's well-being. METHODS: A survey was disseminated to pharmacists working in Australia during April and June 2020. The survey measured demographics, burnout, and psychosocial factors associated with working during COVID-19. A two-step cluster analysis was used to categorize pharmacists based on burnout and other variables. RESULTS: A total of 647 survey responses contained data that were used for analysis. Participants were mostly female (75.7%) and working full time (65.2%). The final cluster analysis yielded an acceptable two-cluster model describing 2 very different pharmacist experiences, using 10 variables. Cluster 2 (representing 53.1% of participants) describes the "affected" pharmacist, who has a high degree of burnout, works in community pharmacy, experiences incivility, is less likely to report sufficient precautionary measures in their workplace, and has had an increase in workload and overtime. In contrast, cluster 1 (representing 46.9% of participants) describes the profile of a "business as usual" hospital pharmacist with the opposite experiences. Interventions focused on the "affected" pharmacist such as financial support to employ specialized staff and equitable access to personal protective equipment should be available to community pharmacists, to reduce the risk to these frontline workers. CONCLUSION: The use of cluster analysis has identified 2 distinct profiles of pharmacists working during COVID-19. The "affected" pharmacist warrants targeted interventions to address the high burnout experienced in this group.

"You say you're inclusive, but can you show us?" The importance of cultural competence when working with sexual minorities in a mental health setting.

OBJECTIVES: Sexual minorities experience higher rates of psychological distress than heterosexual people, likely due to minority stress. While rates of help-seeking by sexual minorities are high, sexual minorities report greater dissatisfaction with mental health service providers. This dissatisfaction may result from poor cultural competence practices. Our study sought to determine the importance of service provider cultural competence practices to a community sample of sexual minority people. METHODS: Participants (n = 274) were sexual minority Australians recruited from affirming Facebook groups, organizations, and research-based organizations. To measure the importance of cultural competence practices, participants completed a modified online version of the Gay Affirming Practices Scale (GAP) and responded to open-ended questions. RESULTS: Between 80% and 99% of participants endorsed each item on the GAP, indicating the importance of service providers demonstrating an array of culturally affirming practices. No significant associations were found between overall GAP score and age or sexual orientation, though further analyses revealed individual items on the GAP showed associations with age. A structured tabular thematic analysis, of open-ended participant responses, found positive attitudes, knowledge, and affirming practices were the three most important characteristics for service providers seeking to demonstrate culturally competent practices, mirroring the tripartite model (attitudes, knowledge, and skills) of cultural competence. CONCLUSION: Recommendations for service providers to demonstrate cultural competence include: utilizing affirming practices such as inclusive language, increasing knowledge about sexual minorities, and utilizing education resources such as cultural competence workshops, lived experience stories, and seeking mentorship from service providers with expertise in working with sexual minorities.

We have to set the bar higher: towards consumer leadership, beyond engagement or involvement.

Understanding of the benefits of consumer-led health policy, practice, research and education has been developing for decades. However, barriers to genuine, non-tokenistic consumer leadership remain across the health sector. While recent calls to align Australian consumer engagement practices with those in the UK and elsewhere may sound progressive, doing so would be problematic for three reasons. First, Australia has been at the forefront of consumer leadership scholarship and advocacy for decades, and we should not ignore the work consumers and allies have done in improving our health systems. Second, although there have been positive outcomes from consumer engagement and inclusion practices (as often required in other jurisdictions), they are open to tokenism and continue to position consumers' experiential expertise as 'lesser' compared to other health sector stakeholders' knowledge. Last, compared to consumer leadership, engagement or inclusion are 'lower bars' for health professionals to aim for. If we settle for engagement or inclusion in cases where consumer leadership would have been possible, then we lose not only our position at the forefront of consumer leadership, but also the expertise of consumers. Three propositions are provided: (1) we should support consumer-led development policy for consumer leadership in health, (2) we should ensure consumer leadership in oversight over as well as conduct of health and medical research, (3) we should encourage honest claims about the extent to which projects or initiatives are led by or with consumers.

The experiences of pharmacists during the global COVID-19 pandemic: A thematic analysis using the jobs demands-resources framework.

BACKGROUND: COVID-19 has necessitated a change to the way pharmacists are providing healthcare and has impacted the psychological wellbeing of these frontline healthcare workers. OBJECTIVE: To use the job demands-resources framework of burnout to describe the experiences of pharmacists working during COVID-19. METHODS: An online survey investigating burnout, psychosocial, and work-related factors affecting pharmacists during COVID-19 was distributed to a convenience sample of pharmacists practising in Australia during April and June 2020. The survey was distributed via social media and professional organisations. This study was a thematic analysis of the free-text question of the survey that asked participants to provide comment on anything they considered important. The job demands-resources framework of burnout was applied to the themes. RESULTS: Of 647 total survey responses, 215 (33.2%) participants responded to the free text question. Thematic analysis explored the increase in demands on pharmacists with a decreased availability of resources during COVID-19. Themes associated with high demands included an increased workload, provision of education and support to the community, taking on roles traditionally performed by others, managing medication and stock supply issues, and poor consumer behaviour. Themes representing resources, which were inadequate, included feeling supported by management and colleagues, feeling adequately trained, receiving clear and consistent communication, feeling valued and appreciated, personal safety, and recovery time. CONCLUSIONS: Pharmacists have experienced increased demands and reduced resources during COVID-19 which is associated with burnout. Knowledge of these demands and resources can inform interventions at an individual, workplace, and external level. Recommendations made in this paper are aimed at increasing resources available to pharmacists.

A systematic review to determine how service provider practises impact effective service provision to lesbian, gay and bisexual consumers in a mental health setting.

Lesbian, gay and bisexual (LGB) consumers utilize mental health services at a similar rate to their heterosexual counterparts yet report greater dissatisfaction with service quality. This dissatisfaction may be explained by service provider's microaggressions, stemming from a lack of cultural competence in working with LGB consumers. This systematic review examines how the practises of mental health service providers impacted effective service provision to LGB people in a clinical practice. Five health databases (Scopus, MEDLINE, PsycINFO, Web of Science and CINAHL) were examined to determine relevant studies for this review. Twenty four qualitative and quantitative studies between 2000 and 2020 examining data related to how service provider practises impacted effective service provision to LGB people were included in the final review. A narrative synthesis, thematic summary approach was employed to account for the multi-method nature of the data. Themes developed in our analysis are organized under the three components of cultural competence, service provider attitudes, knowledge and skills. Provider attitudes ranged from positive to negative towards LGB people and heterosexism were present in several services. Poor service provider knowledge about the issues impacting LGB consumers leads to a weakened therapeutic alliance and service providers often lacked a comprehensive understanding of the issues impacting LGB people. Service providers were seen as more skilful if they were LGB, created a safe space and had completed cultural competence training. Trends within the characteristics (explorative nature, mixed service provider samples, potential for bias) of the 24 studies included in the review are discussed. Based on the results, recommendations are included to ensure services demonstrate cultural competence in working with LGB consumers.