Search

This paper draws together critical learnings from diverse qualitative health research projects in Australia that sought to shift power and focus on the strengths and expertise of people with lived experience who are involved as co-researchers. These projects have included exploring and challenging identities, understanding experiences in treatment programs, critiquing and designing/re-designing services, and sharing experiences with the wider community in novel and innovative ways. Lived experiences included alcohol and other drug dependency, mental health, domestic, family or sexual violence, and living with HIV. This paper provides important learnings and actions about partnering with co-researchers with lived experience. In this paper we draw on a process of reflective discussions that occurred over six months with fortnightly online meetings between co-researchers, including co-authors with lived experience external to academia and university-based researchers, some of whom also have lived-experience that intersects with their research. From this, we distilled key learnings across seven themes: (1) the ethics of ethics, which highlights a need for constant reflection on the ethical issues in co-research; (2) recruiting co-researchers, which focuses on ensuring and integrating a diversity of voices; (3) creating safety for all, which must be a priority of engagement and support self-determination; (4) supporting different ways of partnering, which emphasises the need for diverse roles and ways to contribute on research teams; (5) capacity building and training, which requires ongoing evaluation of needs and tailored responses; (6) positioning, which highlights the need to transition from the idea of vulnerability to a strengths-based perspective of lived experience; and (7) power plays, reflecting the need to disrupt the dynamics and established hierarchies of privileging certain forms of knowledge and expertise. The paper includes recommendations for action against these seven themes. [ABSTRACT FROM AUTHOR]

This paper explores the application of Constructivist Grounded Theory (C-GT) methodology for social work research. First, it argues that C-GT methodology is well aligned with social work as the two value the individual in the context of their environmental influences. Both also prioritise the importance of respecting and valuing the participant or individual, seeing their perspective as unique and significant. Finally, this research methodology's systematic yet flexible guidelines align with social work ethics, which also focus on the importance of professional integrity. The paper then provides an example of a C-GT PhD study in relation to an area of social work practice, that is, stability in statutory kinship care in Queensland, Australia. The paper details the specific recruitment and sampling of participants, data collection and coding analysis examples from the PhD study. The examples evidence the relevance of C-GT methodology and its application for research in the area of social work practice, specifically statutory kinship care. [ABSTRACT FROM AUTHOR]

Faced with a series of COVID-19 related lockdowns in Australia across 2020 and 2021, and anxious about the safety of our research participants, we developed a novel approach to body mapping, an arts-based research method typically undertaken in-person. We produced a facilitated body mapping workshop hosted via an online videoconferencing platform. Workshops brought together 29 participants with disability, mental distress and/or refugee background who used body mapping to represent their embodied experiences of stigma and discrimination. These workshops generated rich data, and participants reported a high level of satisfaction with the process. In this paper we describe our novel approach to body mapping, and share practical tips for others who wish to undertake body mapping remotely. We outline strengths associated with this method: increased accessibility, enhanced connection between participants, the formation of a space to explore challenging subject matter, the production of rich data, and the creation of diverse body maps. We also discuss shortcomings and challenges which those considering the method should be aware of: increased logistical burden, demands related to space, IT difficulties, the danger of over-sharing, and diminished cohort sizes. To our knowledge, this is the first paper to report on body mapping facilitated via web-based workshops. Here, we seek to provide practical advice and useful insights for others hoping to utilise body mapping online. [ABSTRACT FROM AUTHOR]

Researchers have found that many post-secondary music students suffer from physical and mental health issues. However, researchers have mainly studied these problems at the individual level, with little investigation of how music students' work is shaped by the coordinating effects of policies, texts, and discourses at and beyond their local site. This paper describes a protocol for an international project that will explore the health of music students in the context of their daily work. Using an institutional ethnography approach, we will examine the social organization of music students' work at three universities: two in Canada and one in Australia. This will be the first set of studies that use institutional ethnography specifically for the purpose of understanding how the social organization of music students' work shapes their health. Data will be collected using several methods common to institutional ethnography: interviews, focus groups, observations, and collecting texts. Data analysis will begin during the data collection process and proceed in two fluid stages. The first stage will involve a detailed investigation of the pertinent work activities at each music school. The second will involve linking that work to specific social relations within and beyond the institution. After data analysis has been completed at all three sites, findings will be compared to one another to identify commonalities and differences in how students' work is organized. Findings of the entire project may inform policy-making and lead to positive change at the institutions studied, as well as others where similar social organization may occur. The novel approach described here will provide opportunities to expand current knowledge about music students' work and health beyond what has been learned through approaches that focus on students' individual behaviours and attributes. [ABSTRACT FROM AUTHOR]

Background: Doctors with a history of mental health or substance use challenges face barriers accessing treatment and are difficult to recruit for research. This makes understanding their experiences challenging, yet essential. Overcoming barriers to research participation among unwell doctors is critical to advancing their overall health and wellbeing. Methods: A qualitative interview study of 21 allegedly impaired doctors in Australia and Aotearoa New Zealand who were subject to regulatory processes relating to their health. Based in an interpretative phenomenological paradigm, this paper examines participants' motivations for participation in this study and their reactions to participating. It highlights wider implications for sensitive research involving doctors and marginalised groups. Results: Participants were strongly motivated to participate in our research for their own benefit (desire to be heard, catharsis, and empowerment) and to benefit others (to change the system, and to avoid other doctors experiencing what they experienced). Careful planning and communication of unique legal risks fostered a trusting researcher-participant relationship. To assist other researchers undertaking sensitive qualitative research with vulnerable participants, we describe our research protocol, challenges, and successes in detail. Conclusions: Despite ethical concerns about research risk, researchers can and should pursue qualitative research into the experiences of under-represented groups, including allegedly impaired doctors. Without involving them in research that examines issues directly impacting on them, we may be inadvertently perpetuating the barriers and stigma that also hinder them from accessing treatment and support. This also deprives us of knowledge that can be used to improve doctors' health. This paper has broader relevance for anyone doing research with doctors, people in vulnerable positions, people disempowered by institutional or social systems, people who are stigmatised or shamed, and people who have experienced trauma. [ABSTRACT FROM AUTHOR]

Australia responded to the emergence of the COVID-19 global pandemic in 2020 by initiating a border and bio-security zone lockdown and policies emphasising social distancing and hand hygiene. To understand the public response to this, Southern Queensland Rural Health commenced a two-phase research project exploring attitudes and practices towards the COVID-19 pandemic in Australia. An initial online survey foreshadowed 90 qualitative interviews with respondents to explore what the pandemic meant for everyday life. This paper details use of a qualitative approach by a national collaborative of investigators from 9 rural university departments in Australia who came together to research the qualitative phase of the project. Our methodological approach aligned with extant literature describing the management of large-scale interviewing and coding in the context of unfolding and dynamic contexts. The 'RITA' model (Rapid Identification of Themes from Audio recordings) entails a five-step process designed to progress from identifying research foci, through deductive and iterative coding to identify key concepts. We used a combination of coding templates, organisation and tagging of field notes and real-time sharing through a secure cloud drive to create a data set for immersive analysis and generation of ideas. Use of this method has added to the collective knowledge about successful rapid research investigations, recognising the inherent tension between speed and rigour. This is not a binary but a dialectic; trustworthiness is integral to qualitative research. However, use of fresh approaches is accommodated by new technologies and can preserve adequate rigour while enabling collaboration, research capacity building and increasing the pace of data collection and analysis. This project has presented methodological challenges and highlights some strengths of such an approach. It is hoped that reporting our approach and experiences is useful for the broader health and research community considering large-scale qualitative research. [ABSTRACT FROM AUTHOR]

In 2012, the Australian Commonwealth Government introduced a series of reforms for the aged care sector including the implementation of the National Prioritisation System for a flexible, accessible and demand-driven approach to home care services for older people. Nevertheless, an increasing number of older people continue to wait for months to be assigned home care packages on the national prioritisation queue, a component of the National Prioritisation System. There is limited evidence on the impact of the national prioritisation queue on discharge planning practices of social workers in supporting older people returning home from hospital admission. The aim of the research described in this paper is to explore the perceptions of social workers from rural and urban health services areas on how the introduction of the national prioritisation queue has influenced discharge planning of older people who are still waiting assignment of home care packages. This study protocol establishes the need for this qualitative study and provides an overview of the theoretical framework underpinning the research; discusses and describes the methods for sampling/recruitment and data collection, the approach to be utilised for qualitative analysis and the planned dissemination strategy. Understanding how social workers respond to the perceived challenges to discharge planning posed by the national prioritisation queue and the implications arising from the research have the potential to inform the development of best practice approaches and further enhance social work response to identified issues. [ABSTRACT FROM AUTHOR]

Understanding the influence of rural social determinants on health can contribute to alleviating disparities between the health of urban and rural populations. Qualitative methodologies have made a substantial contribution to our understanding of rural health issues. However, there are few published case studies of the process of designing qualitative studies which can contribute to a better understanding of how to conduct and evaluate qualitative research. This paper adds to the methodological literature by describing the process of developing a methodology for a study of how women in remote areas achieve health and well-being. In the paper the author documents the process and illustrates an individual's search for a method that would suit her research problem and her personal and professional ideology. Metaethnography, constructivist grounded theory, and dialogic/performance narrative methods are identified as a qualitative methods particularly suited to health and other areas of rural social research. [ABSTRACT FROM AUTHOR]

Across disciplines, qualitative researchers have documented epistemological and practical tensions in the ethical review of community-based and participatory research, with many arguing that ethics committees' decisions perpetuate the exclusion of marginalised communities from research engagement. In the existing literature, the research team and the ethics committee are often characterised as staunch opponents. Conversely, in our recent qualitative research addressing communication about sexuality with young people with cerebral palsy who use communication methods other than speech (augmentative and alternative communication), we found that constructive collaboration between researchers and committee members yielded novel insights. Co-authored by a multi-disciplinary research team and the former chair of a Human Research Ethics Committee, this reflexive case study identified three key tensions which arose in the ethical review of research involving this purportedly marginalised population, which reflected the wider importance of trust. We propose a series of practical recommendations to support productive collaboration in the pursuit of safe, inclusive and community-driven research. Plain language summary: Introduction: In Australia, researchers follow rules and policies to make sure their research is safe, fair, and correct. Before a research project starts, a group of experts called an ethics committee checks the researchers' plan, to make sure it is safe. Sometimes, ethics committees are worried that people with a disability could be hurt or upset by a research project. To protect people with a disability, ethics committees may say: • that the research activities need to change, or • that children with disability or people with intellectual disability can't participate in the research, or • that other people (e.g., a parent or guardian) should always give their permission for the person with a disability to participate. Sometimes these changes are sensible and safe. But sometimes they make research unfair or hard to access for people with a disability. This is frustrating when a research plan has been designed by people with a disability, or by people who know them well. What We Did: We did research with young people who have cerebral palsy who use methods other than speech to communicate (like gestures, communication books, or communication devices). Our research was about private topics like relationships and sex. When we applied to do our research, the ethics committee had lots of concerns. They asked us to change a lot of things. They even asked us to change some of the things that people with disability told us they wanted or needed. It was a long and frustrating process. We talked with the leader of the ethics committee and decided to write this article together. We wanted to help other researchers, ethics committees, and people with disabilities to work better together. What We Found: It is important that people with a disability be included in research that is fair and safe. Ethics committees have a big responsibility to keep people safe, but the experts who work on an ethics committee may not know a lot about disability. Stories and videos of people with disabilities participating in research can help the ethics committee to understand what is possible. Ethics committees can also talk to people with a disability, to learn more about their research needs and experiences. All research participants with a disability are unique. Every person will have different risks and different needs. Some people will have more than one accessibility need. For example, a young person with physical disability like cerebral palsy may also have difficulty reading and may not use speech to communicate. When ethics paperwork asks about each need separately, it can be hard to explain how a person with a lot of access needs will be supported. When research participants have complex needs, ethics committees can feel confused and worried. If this happens, they should have a conversation with the researchers about it, instead of saying "no" to the research. Sometimes researchers want to use special or creative research methods to involve people with disabilities. These need to be explained clearly, so the ethics committee can trust that they are safe. Researchers and ethics committees can also use research rules and resources that are created for, and by, people with a disability. These are written by large organisations like the International Association for the Scientific Study of Intellectual and Developmental Disabilities (https://iassidd.org/). By following these steps, we think that research can be safer and more inclusive for everyone. Contact: If you want more information about this article, you can email Megan Walsh at mcwalsh@deakin.edu.au. [ABSTRACT FROM AUTHOR]

There is a profoundly troubling history of research being done on Indigenous peoples without regard for their priorities and accompanying calls to decolonize health research. Storytelling methods can privilege Indigenous voices in research. Indigenous people's knowledge systems have existed for millennium, where knowledge is produced and shared through stories. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous Elders, patients, healthcare providers, and administrators, conducted a participatory, scoping review to examine how storytelling has been used as a method in Indigenous health research on Turtle Island (North America), Australia, and Aotearoa (New Zealand). We searched key databases and online sources for qualitative and mixed-methods studies that involved Indigenous participants and used storytelling as a method in health research. Reviewers screened abstracts/full texts to confirm eligibility. Narrative data were extracted and synthesized. An intensive collaboration was woven throughout and included gatherings incorporating Indigenous protocol, Elders' teachings on storytelling, and sharing circles. We included 178 articles and found a diverse array of storytelling approaches and adaptations, along with exemplary practices and problematic omissions. Researchers honoured Indigenous ways of knowing, being, and doing through careful preparation and community engagement to do storywork, inclusion of Indigenous languages and protocols, and Indigenous initiation and governance. Storytelling centered Indigenous voices, was a culturally relevant and respectful method, involved a healing process, and reclaimed Indigenous stories. But it could result in several challenges when researchers did not meaningfully engage with Indigenous peoples. These findings can guide respectful storytelling research that bridges divergent Indigenous and Western knowledge systems, to decolonize health research. [ABSTRACT FROM AUTHOR]

Unintentional injuries are a leading cause of preventable harm among adolescents. Adolescents also experience an increased risk of farm injury, and in Australia, injury-related farm fatalities among adolescents have remained largely unchanged over the past two decades. A third of all incidents involve farm visitors, indicating the need for population-level safety information. This project uses qualitative data to inform a co-design process with adolescents, and their teachers, to develop a game-based farm injury prevention online educational resource. This protocol describes the multi-phase co-design project. Focus group discussions regarding farm injury prevention will be held with students (Year 7 & 8; ∼12–14 years of age) and teachers at high schools with an agricultural focus across two Australian states. Inductive thematic analysis of discussion transcripts, and analysis of farm injury data, will inform the development of the modules and content of the game. User experience testing of the prototype will form the final phase of the project. This process is supported by a Stakeholder Advisory Group, which includes representatives of youth farming organisations, agricultural educators, and national child safety organisations. This group will assist in interpretation and dissemination of findings and promoting the resultant educational resource in schools. Ethical approval has been granted by the University of New South Wales Human Research Ethics Committee. Results will be disseminated through peer-reviewed publications, mass media releases, academic conferences, and the agricultural education sector in Australia via the stakeholder advisory group. This study will provide useful insights into co-designing injury prevention resources for adolescents using gamification and result in a co-designed farm injury prevention educational resource for schools and the general community via mobile and web-based applications. [ABSTRACT FROM AUTHOR]

Exploring constructions of mental health in the perinatal period among Indian immigrants can be challenging. This article describes the use of visual methods, photo elicitation, free listing and pile sorting, as an adjunct to face-to-face interviews to understand the constructions of perinatal mental health among Indian immigrants in Australia. The benefits and challenges of using these methods and modifications made during the research are explained. The modifications resulted in a broader understanding of terminology used by the Indian community. Incorporating visual methods as an adjunct to interviews when discussing perinatal mental health with Indian immigrants is effective and using multiple methods enhances the richness of data. [ABSTRACT FROM AUTHOR]

Asthma is a chronic inflammatory condition of the airways with a heterogenous symptom profile. When symptoms are poorly controlled and frequent, asthma sufferers are impacted regularly, with limitations on physical activities and sleep disturbances, significantly impairing quality of life. Asthma is highly prevalent and the leading cause of disease burden in young people. Those aged 0–14 contribute to over half of the asthma hospitalisations within Australia. Asthma education and self-management remains a key component of care; however, challenges remain in the paediatric population with difficulties of engagement. Augmented reality (AR) may provide a novel and effective solution with its ability to superimpose virtual objects into a real-world setting. Using a smartphone or tablet to deliver AR makes this modality accessible to much of the population. AR is a growing field in technology and has already established uses in education and training. The ability to increase motivation, enhance enjoyment and encourage faster concept understanding in the educational setting is encouraging and supports our proposal that AR technology can provide a generation appropriate education delivery modality for young people with asthma. To ensure successful implementation of an AR asthma educational resource on a large scale, the usability, acceptability, barriers and enablers of its use must be investigated. Using an iterative co-design process, an asthma resource utilising AR to deliver education on inhaler technique will be created. Qualitative research will be undertaken using semi-structured interviews with moderator guides to obtain mixed-method data on the AR resource. Participants will be key members of the asthma community including children and adolescents with asthma (8–17 years old), caregivers of children and adolescents with asthma, and health professionals. Understanding the usability, acceptability, barriers and enablers of the AR resource will enable us to improve our alpha version and test an optimal version in a planned feasibility study. [ABSTRACT FROM AUTHOR]

Children who live in households where domestic violence is occurring have been variously described in the literature over time as silent witnesses, witnesses, a cohort who is "exposed" to the violence, and more recently, as individual victim survivors and active agents in their own right, each with their own lived experience of violence. Research methodologies in this arena have shifted from adult-focused measurements of the impacts of domestic violence on children to more qualitative attempts to understand the experience from the child's perspective. In doing so, there have been notions of giving "voice to the voiceless" and doing no further harm through a desire to protect children from exposure. However, the relational framing of children's voices and recognition and enabling of children's agency is less evolved in research and professional interventions. A study undertaken in Australia researched with a primary care population of 23 children and 18 mothers, children's experiences of safety and resiliency in the context of domestic violence. The findings of the research were realized using qualitative research methods with children and the analytical framing of hermeneutical phenomenology, ethics of care and in particular dialogical ethics, to draw practical understanding and application in health care settings. This article aims to demonstrate how the analytical methodology chosen was applied in the research process and reveals the elements required for children to experience agency in navigating their relationships in an unsafe world, while learning about themselves. It draws upon understandings of the child's relational context and introduces a model of children's agency, which may have applicability for domestic violence policy and practice settings. [ABSTRACT FROM AUTHOR]

This article will aim to demonstrate how we applied a collaborative dialogical research approach to understand perspectives of an Aboriginal wellbeing program by extending Habermas' Theory of Communicative Action to respect Australian Aboriginal ways of knowing, being and doing. This process aims to disrupt the colonizing discourse by bridging the disconnect between Indigenous decolonizing methods and Western knowledges, toward a dialogical, respectful, appropriate and reciprocally beneficial research project. We discuss how layers of reflexivity (self, interpersonal and collective) have a role in communicative relationality (trust and shared decision making). We propose cross-cultural communicative relationality is strengthened by three key researcher actions; inner listening, relational actions beyond discourse and collective knowledge, along with Habermas criteria for discerning the motivations of action (communicative vs strategic). This article provides researchers from a variety of disciplines a way to respectively research in the critical paradigm while considering Aboriginal ways toward building a relationship that is mutually beneficial. [ABSTRACT FROM AUTHOR]

New or adapted methods and tools are needed to ensure the voices of older people with cognitive impairment and dementia are included in evaluations of care services which aim to support their quality of life (QoL). In this study, cognitive interviewing practices were used with a group of 26 older service users with cognitive impairment from two service providers in New South Wales, Australia, to test and modify the Adult Social Care Outcomes Toolkit Easy Read (ER) survey to improve its suitability for this cohort. We used Antonovsky's "sense of coherence" framework to describe our research approach and how it was adapted to provide a manageable, meaningful, and comprehensible experience for our participants. While the modified ER format made the survey more comprehensible and meaningful, it was the techniques of cognitive interviewing that made the research approach manageable. We argue that while ER does support the research process for older service users with cognitive impairment, combining ER pictorials with the qualitative interactions with the researcher, in particular cognitive interviewing strategies, is needed to support a cohesive approach to assess care-related QoL in this vulnerable group. [ABSTRACT FROM AUTHOR]