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.

"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.

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.

"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.

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.

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.

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.

"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.

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.

'I know you shouldn't compare to other people, but I can't do anything most people can': Age, family and occupation categorisations in men's reasoning about their anxiety in an online discussion forum.

Despite its prevalence, men's anxiety is arguably under-researched and poorly understood. The present study explores the reasoning provided by male posters to an online discussion forum about the source of their anxiety. Posts were collected from an Australian anxiety online discussion forum. This study utilises discursive psychology, informed by principles of membership categorisation analysis, to describe how age, occupation and family-related identities can be invoked within common sense reasoning about the source of male anxiety. References to various identity categories were routinely employed by male forum posters in their representations of themselves, in order to describe the source of their anxiety in terms of a contrast between how they are, and how they should be. In examining accounts of anxiety and responses to those accounts, we can trace cultural knowledge about issues regarding men, masculinity and anxiety that those accounts make relevant. Findings illustrate how men's descriptions of the source of their anxiety should be understood as culturally bound and related to expectations and obligations associated with their social context and category memberships. By enhancing understandings of how men describe the source of their anxiety, this study offers insight into improving the identification and engagement of men experiencing anxiety in health services.

'People Just Need to Try It to Be Converted!': A Picture of Consumer Mental Health Research in Australia and New Zealand.

A range of barriers that impede collaborations between consumer researchers and other researchers have been identified, despite clear acknowledgement of the benefits of this approach in the literature. Recent research has questioned whether the costs of collaborative research outweigh the benefits. The overarching aim of the current study is to better understand non-consumer researchers' attitudes to, and issues concerning, engagement with consumer researchers. Non-consumer researchers from mental health disciplines were invited to participate in the cross-sectional Consumers as Researchers in Mental Health survey, and to respond to open-ended questions about their experiences of collaborative research with consumer researchers. The findings demonstrate a range of benefits associated with collaborations with consumer researchers - including increased relevance and credibility of research, and greater translation of research findings into changes in health policy, service, research and education. Collaborations were found to be varied and not limited by research design, decision-making styles, or research topic. Understanding these benefits within the context of identified barriers can make an important contribution to the proliferation of mental health consumer researcher roles.

Becoming an Expert by Experience: Benefits and Challenges of Educating Mental Health Nursing Students.

Expert by Experience involvement in mental health nursing education is increasing in popularity as a teaching technique. The emerging literature attests to its benefits in enriching the educational experience for students. Much less attention has been devoted to the experience from the perspective of the Experts themselves. To address this gap and ensure this important perspective is captured and considered, the aim of this paper is to present the perceptions and experiences of Experts by Experience in delivering an educational module to mental health nursing students. A qualitative exploratory approach was adopted, involving in-depth individual interviews with Experts by Experience who delivered a learning module to nursing students in Australia and Europe. Data were analysed thematically. Analysis produced two overarching themes: Empowerment, and Challenges. Challenges included six sub-themes: Being constructive, not just critical; Time to unpack and reflect; Need for co-production and support from nursing academics; Emotional and practical support; maintaining personal boundaries; and adapting to the audience. These findings make a significant contribution to a broader understanding of Expert by Experience involvement in mental health education. The use of standards to maintain integrity and avoid tokenism is recommended.

"But I'm not going to be a mental health nurse": nursing students' perceptions of the influence of experts by experience on their attitudes to mental health nursing.

BACKGROUND: Mental health nursing skills and knowledge are vital for the provision of high-quality healthcare across all settings. Negative attitudes of nurses, towards both mental illness and mental health nursing as a profession, limit recognition of the value of these skills and knowledge. Experts by Experience have a significant role in enhancing mental health nursing education. The impact of this involvement on attitudes to mental health nursing has not been well researched. AIM: To explore the impact of Expert by Experience-led teaching on students' perceptions of mental health nursing. METHODS: Qualitative exploratory study involving focus groups with nursing students from five European countries and Australia. RESULTS: Following Expert by Experience-led teaching, participants described more positive views towards mental health nursing skills and knowledge in three main ways: learning that mental health is everywhere, becoming better practitioners, and better appreciation of mental health nursing. CONCLUSIONS: Experts by experience contribute to promoting positive attitudinal change in nursing students towards mental health nursing skills and knowledge. Attitudinal change is essential for the provision of high-quality mental health care in specialist mental health services and throughout the healthcare sector.

'Not in the room, but the doctors were': an Australian story-completion study about consumer representation.

Current mental health policy requires consumer involvement in all levels of health service management (i.e. planning, implementation, delivery and evaluation). However, current models often limit consumers to 'representation' roles that are criticized for silencing consumer views. This study compares understandings of consumer representatives' and health professionals' participation in decision-making processes in the mental health sector in Australia. Story completion methods were employed, with 34 participants (21 consumers, 8 health professionals and 5 people identifying both as consumer and health professional) completing a story stem about either a consumer representative or a health professional changing a committee meeting agenda. Using a thematic approach, three overarching themes were developed: how consumer representative roles remain unvalued, how such lack of value translates to not achieving co-production and how consumer representative roles can be better supported through allyship or subversion against organizational cultural norms. Findings suggest that organizational cultural norms in health settings need to be more inclusive of consumers to maximize the benefits of partnerships and fulfil policy expectations. Two methods for greater empowerment of consumers working in mental health are through allyship with non-consumer health professionals who support the goals of the consumer movement, and subversion of current practices.

"I Feel Abused by My Own Mind": Themes of Control in Men's Online Accounts of Living With Anxiety.

Men's experiences with anxiety are under-researched and poorly understood. Existing research gives little indication of how men talk about anxiety in situ, and little is known about how men describe their experiences of anxiety. Online discussion forums provide an opportunity to conduct naturalistic observations of how men describe their experiences with anxiety without the influence of a researcher. Thematic analysis, informed by principles of discursive psychology, was used to examine 130 opening posts to an online anxiety discussion forum. One superordinate theme, where anxiety is constructed as a loss of control, was identified. Analysis of this overarching theme generated three themes relating to how posters described a loss of control: (a) anxiety as an immobilizing force, (b) anxiety as an independent entity, and (c) anxiety as a dualist construction of the self. Our analysis has clear implications for developing and improving interventions for men experiencing anxiety.

The tyranny of difference: exploring attitudes to the role of the consumer academic in teaching students of mental health nursing.

Background: Consumer participation in mental health service delivery is now a policy expectation. Negative attitudes of health professionals towards collaboration with consumers have been identified as a major barrier to policy implementation. Consumers contributing to the education of nurses and other health positions have been identified as an effective strategy, particularly when consumers occupy academic positions. Attitudes of nurse and consumer academics to the consumer academic role remain under-researched.Aims: To explore the implementation of a consumer academic position from the perspectives of the broader academic team.Methods: Qualitative exploratory research was undertaken to give voice to different perspectives of the implementation of a consumer academic position. In-depth interviews were conducted with nurse academics, the consumer academic and the research team.Results: Thematic data analysis revealed five main themes: seeking a united perspective; who can provide a consumer perspective? How accurate is consumer perspective? One consumer, one opinion, one way, one delivery; bias and poor portrayal of nurses.Conclusions: Marked divergence in views and opinions was evident in terms of support for the role and its perceived value. Further investigation of factors facilitating successful implementation is required and strategies identified to facilitate mutual understandings and goal setting.

Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis.

BACKGROUND: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. AIM: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. DESIGN: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). DATA SOURCES: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers' leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. RESULTS: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. CONCLUSION: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.

End-of-life care in an Australian acute hospital: a retrospective observational study.

BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives. AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital. METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology. RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups. CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.

Rhetoric of representation: the disempowerment and empowerment of consumer leaders.

Policy mandates consumer involvement in decisions at all levels of the mental health system. One barrier to this involvement is the expectation that consumers involved in systemic work represent broader consumer experiences. To examine how the rhetoric of 'representation' was used in relation to consumer involvement in mental health, a qualitative exploratory design was employed using interviews for data collection. Participants were consumers (n = 6) working with public or private mental health organizations in Australia, and colleagues (n = 3) or managers (n = 5) of these consumers. Discursive psychological principles informed the analytic process, to explore contexts in which 'representativeness' was used to empower and disempower consumers. The findings suggest there is a lack of clarity about what is meant by representation in the mental health sector. Expecting individual consumer leaders to be representative of consumer views more broadly disempowered them in their roles. Some participants instead discussed ways that organizations should be responsible for seeking representation from more consumer leaders, thus empowering consumers working in the sector. Using the term 'representative' to refer to consumers working in mental health does not reflect the value of the consumer perspective and is not well understood within the sector. Comprehensive training should be provided so that mental health service providers are clear regarding the expectations of people in these roles.

Consumers at the centre: interprofessional solutions for meeting mental health consumers' physical health needs.

Interprofessional care and consumer-oriented services are embodied in modern healthcare policy and practice. The views, needs, and values of consumers are essential to ensuring translation of policy to practice. This is particularly pertinent for people diagnosed with mental illness who experience a higher risk of physical health problems and premature death. A qualitative, exploratory research project was conducted, involving focus groups with members of a mental health consumer group in the Australian Capital Territory. Participants were asked about their experiences and opinions in relation to physical health and care and treatment provided. Focus group transcripts were thematically analysed. Three themes arose via analysis: (1) Meeting diverse physical healthcare needs, where mental health consumers connect with many types of healthcare providers, conventional and non-conventional, (2) centre of the interprofessional team for holistic care, where there is preference for a consumer-centred group effort in addressing health issues as the model of care, and (3) more gateways, less gatekeeping, where points of access were affected by cost, place and gatekeepers could be enabling. People with mental illness seek enhanced collaboration between a broader range of health professionals, with potential to contribute to their overall health and well-being.