A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy.

STUDY OBJECTIVES: Parents/carers of a child with narcolepsy are often required to become experts in narcolepsy and navigate health care, education, and welfare systems on behalf of their child. Managing pediatric narcolepsy is complex and challenges the child and the entire family, yet few studies have explored carers' experiences. METHODS: Twenty mothers (50% had a child with narcolepsy < 18 years at the time of interview; 85% narcolepsy with cataplexy) participated in a 1:1 semistructured interview. Participation from fathers was sought; however, none were recruited. A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Mothers perceived that most people misunderstood the whole-person impact of narcolepsy, including their child's peers, teachers, and support networks. Narcolepsy had a substantial psychological impact on both the child and the whole family yet was largely unaddressed by health care professionals, leaving mothers unsure of where to turn for help. Most parents described negative experiences with their child's specialist, often perceiving the specialists to lack knowledge specific to narcolepsy. Information about illness trajectory and support services was limited or inaccessible, fueling many mothers' hopes and fears for their child's future. Mothers also frequently described feelings of abandonment by the health care system. CONCLUSIONS: Our results contextualize the whole-person impact of narcolepsy from the perspective of parents and carers, highlighting the need for proactive inclusion of parents/carers in developing health care policy and practice. It calls for developing tools and resources to capture "well-managed" narcolepsy from the perspective of parents/carers for use in research and clinical practice. CITATION: Schokman A, Cheung J, Klinner C, et al. A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy. J Clin Sleep Med. 2024;20(5):699-707.

A qualitative exploration of young people's mental health needs in rural and regional Australia: engagement, empowerment and integration.

BACKGROUND: Australian rural and regional communities are marked by geographic isolation and increasingly frequent and severe natural disasters such as drought, bushfires and floods. These circumstances strain the mental health of their inhabitants and jeopardise the healthy mental and emotional development of their adolescent populations. Professional mental health care in these communities is often inconsistent and un-coordinated. While substantial research has examined the barriers of young people's mental health and help-seeking behaviours in these communities, there is a lack of research exploring what adolescents in rural and regional areas view as facilitators to their mental health and to seeking help when it is needed. This study aims to establish an in-depth understanding of those young people's experiences and needs regarding mental health, what facilitates their help-seeking, and what kind of mental health education and support they want and find useful. METHOD: We conducted a qualitative study in 11 drought-affected rural and regional communities of New South Wales, Australia. Seventeen semi-structured (14 group; 3 individual) interviews were held with 42 year 9 and 10 high school students, 14 high school staff, and 2 parents, exploring participants' experiences of how geographical isolation and natural disasters impacted their mental health. We further examined participants' understandings and needs regarding locally available mental health support resources and their views and experiences regarding mental illness, stigma and help-seeking. RESULTS: Thematic analysis highlighted that, through the lens of participants, young people's mental health and help-seeking needs would best be enabled by a well-coordinated multi-pronged community approach consisting of mental health education and support services that are locally available, free of charge, engaging, and empowering. Participants also highlighted the need to integrate young people's existing mental health supporters such as teachers, parents and school counselling services into such a community approach, recognising their strengths, limitations and own education and support needs. CONCLUSIONS: We propose a three-dimensional Engagement, Empowerment, Integration model to strengthen young people's mental health development which comprises: 1) maximising young people's emotional investment (engagement); 2) developing young people's mental health self-management skills (empowerment); and, 3) integrating mental health education and support programs into existing community and school structures and resources (integration).

A systematic review of the print media representation of ketamine treatments for psychiatric disorders.

BACKGROUND: Public and patient expectations of treatment influence health behaviours and decision-making. AIMS: We aimed to understand how the media has portrayed the therapeutic use of ketamine in psychiatry. METHOD: We systematically searched electronic databases for print and online news articles about ketamine for psychiatric disorders. The top ten UK, USA, Canadian and Australian newspapers by circulation and any trade and consumer magazines indexed in the databases were searched from 2015 to 2020. Article content was quantitatively coded with a framework encompassing treatment indication, descriptions of prior use, references to research, benefits and harms, treatment access and process, patient and professional testimony, tone and factual basis. RESULTS: We found 119 articles, peaking in March 2019 when the United States Food and Drug Administration approved esketamine. Ketamine treatment was portrayed in an extremely positive light (n = 82, 68.9%), with significant contributions of positive testimony from key opinion leaders (e.g. clinicians). Positive research results and ketamine's rapid antidepressant effect (n = 87, 73.1%) were frequently emphasised, with little reference to longer-term safety and efficacy. Side-effects were frequently reported (n = 96, 80.7%), predominantly ketamine's acute psychotomimetic effects and the potential for addiction and misuse, and rarely cardiovascular and bladder effects. Not infrequently, key opinion leaders were quoted as being overly optimistic compared with the existing evidence base. CONCLUSIONS: Information pertinent to patient help-seeking and treatment expectations is being communicated through the media and supported by key opinion leaders, although some quotes go well beyond the evidence base. Clinicians should be aware of this and may need to address their patients' beliefs directly.

Beyond mere respect: new perspectives on dignity for healthcare workplace learning.

Introduction: Although dignity in workplace learning in healthcare is gathering interest, we know little about stakeholders' conceptualizations in this area across professional groups. Dignity breaches in workplace learning are common, often with serious and long-lasting consequences for the affected. Conceptualizations shape behaviours and experiences. To prevent dignity violations in students' learning, it is thus important to understand stakeholders' understandings of the topic. This study therefore explores the dignity conceptualizations around workplace learning that students, placement educators and university staff hold across seven allied health professional groups. Methods: Using a social constructionist perspective, we conducted individual and group narrative interviews (n = 51) with students, placement educators and university workplace learning staff from seven allied health professional groups. We used the 5-step Framework Analysis to explore and develop themes, identifying differences and similarities across stakeholder groups. Results: We identified eight distinct, yet interrelated, dimensions of dignity from participants' narratives: dignity as respect, dignity as self-x (the various relationships we have with ourselves), dignity as feeling safe, dignity as understanding otherness, dignity as supporting others, dignity as equality, dignity as professionalism, and dignity as belonging. Dignity as respect was identified across all participants, although mutual respect and a culture of respect were only present in academic participants' talk. The remaining seven dimensions all present important factors extending our understanding of the construct of dignity. Discussion: In line with existing research, our study identifies the absence of an unambiguous, positive conceptualization of dignity in workplace learning among stakeholders. It adds novelty in two ways: by identifying dignity dimensions that require informed action beyond respecting others, and by revealing a tension between dignity as professionalism and dignity as equality. We suggest revising existing dignity concepts in workplace learning to address this tension and to reinforce that active care, team integration and skilled support are all non-negotiable elements of dignified behaviour within workplace learning.

Determinants of well-being and their interconnections in Australian general practitioners: a qualitative study.

OBJECTIVES: The well-being of doctors is recognised as a major priority in healthcare, yet there is little research on how general practitioners (GPs) keep well. We aimed to address this gap by applying a positive psychology lens, and exploring what determines GPs' well-being, as opposed to burnout and mental ill health, in Australia. DESIGN: Semi-structured qualitative interviews. From March to September 2021, we interviewed GPs working in numerous settings, using snowball and purposive sampling to expand recruitment across Australia. 20 GPs participated individually via Zoom. A semi-structured interview-guide provided a framework to explore well-being from a personal, organisational and systemic perspective. Recordings were transcribed verbatim, and inductive thematic analysis was performed. RESULTS: Eleven female and nine male GPs with diverse experience, from urban and rural settings were interviewed (mean 32 min). Determinants of well-being were underpinned by GPs' sense of identity. This was strongly influenced by GPs seeing themselves as a distinct but often undervalued profession working in small organisations within a broader health system. Both personal finances, and funding structures emerged as important moderators of the interconnections between these themes. Enablers of well-being were mainly identified at a personal and practice level, whereas systemic determinants were consistently seen as barriers to well-being. A complex balancing act between all determinants of well-being was evidenced. CONCLUSIONS: GPs were able to identify targets for individual and practice level interventions to improve well-being, many of which have not been evaluated. However, few systemic aspects were suggested as being able to promote well-being, but rather seen as barriers, limiting how to develop systemic interventions to enhance well-being. Finances need to be a major consideration to prioritise, promote and support GP well-being, and a sustainable primary care workforce.

Senior medical students as assistants in medicine in COVID-19 crisis: a realist evaluation protocol.

INTRODUCTION: The assistant in medicine is a new and paid role for final-year medical students that has been established in New South Wales, Australia, as part of the surge workforce management response to the COVID-19 pandemic. Eligibility requires the applicant to be a final-year medical student in an Australian Medical Council-accredited university and registered with the Australian Health Practitioner Regulation Agency. While there are roles with some similarities to the assistant in medicine role, such as assistantships (the UK) and physician assistants adopted internationally, this is completely new in Australia. Little is known about the functionality and success factors of this role within the health practitioner landscape, particularly within the context of the COVID-19 pandemic. Given the complexity of this role, a realist approach to evaluation has been undertaken as described in this protocol, which sets out a study design spanning from August 2020 to June 2021. METHODS AND ANALYSIS: The intention of conducting a realist review is to identify the circumstances and mechanisms that determine the outcomes of the assistant in medicine intervention. We will start by developing an initial programme theory to explore the potential function of the assistant in medicine role through realist syntheses of critically appraised summaries of existing literature using relevant databases and journals. Other data sources such as interviews and surveys with key stakeholders will contribute to the refinements of the programme theory. Using this method, we will develop a set of hypotheses on how and why the Australian assistants in medicine intervention might 'work' to achieve a variety of outcomes based on examples of related international interventions. These hypotheses will be tested against the qualitative and quantitative evidence gathered from all relevant stakeholders. ETHICS AND DISSEMINATION: Ethics approval for the larger study was obtained from the Western Sydney Local Health District (2020/ETH01745). The findings of this review will provide useful information for hospital managers, academics and policymakers, who can apply the findings in their context when deciding how to implement and support the introduction of assistants in medicine into the health system. We will publish our findings in reports to policymakers, peer-reviewed journals and international conferences.

Understanding overuse of diagnostic imaging for patients with low back pain in the Emergency Department: a qualitative study.

BACKGROUND: Overuse of lumbar imaging in the Emergency Department is a well-recognised healthcare challenge. Studies to date have not provided robust evidence that available interventions can reduce overuse. For an intervention aimed at reducing imaging to be effective, insight into how both patients and clinicians view lumbar imaging tests is essential. AIM: To explore factors that might influence overuse of lumbar imaging in the Emergency Department. METHODS: Participants were recruited from three hospitals in Sydney, Australia between April and August 2019. We conducted focus groups and/or interviews with 14 patients and 12 clinicians. Sessions were audio-recorded and transcribed verbatim. Data were analysed using framework analysis by a team of four researchers with diverse backgrounds. RESULTS: Patients described feeling that the decision about lumbar imaging was made by their Emergency Department clinician and reported little involvement in the decision-making process. Other potential drivers of lumbar imaging overuse from the patients' perspective were strong expectations for lumbar imaging, a reluctance to delay receiving a diagnosis, and requirements from third parties (eg, insurance companies) to have imaging. Emergency Department clinicians suggested that the absence of an ongoing therapeutic relationship, and the inability to manage perceived patient pressure could drive overuse of lumbar imaging. Suggested protective factors included: involving patients in the decision, ensuring clinicians have the ability to explain the reasons to avoid imaging and collaborative approaches to care both within the Emergency Department and with primary care. CONCLUSION AND KEY FINDINGS: We found several factors that could contribute to overuse of lumbar imaging in the Emergency Department. Solutions to overuse of lumbar imaging in the Emergency Department could include: (1) strategies to involve patients in decisions about imaging; (2) training and support to provide thorough and well explained clinical assessment for low back pain; and (3) systems that support collaborative approaches to care.

Patient and general practitioner views of tools to delay diagnostic imaging for low back pain: a qualitative study.

OBJECTIVE: Delayed prescribing is a promising strategy to manage patient requests for unnecessary tests and treatments. The purpose of this study was to explore general practitioner (GP) and patient views of three communication tools (Overdiagnosis Leaflet, Dialogue Sheet and 'Wait-and-see' Note) to support delayed prescribing of diagnostic imaging. DESIGN: Qualitative study. SETTING: Primary and emergency care in Sydney, Australia. PARTICIPANTS: 16 GPs and 14 patients with recent episode of low back pain. OUTCOME: Views on the tools to delay diagnostic imaging for low back pain. Data were collected using a combination of focus groups and individual interviews. ANALYSIS: Two researchers independently performed a thematic analysis, and the author team reviewed and refined the analysis. RESULTS: GP participants responded positively to the Overdiagnosis Leaflet. The Dialogue Sheet and 'Wait-and-see' Note raised several concerns about patient pushback, adding to time pressure and being overwhelmed with hard-to-find paper resources. GPs preferred to communicate verbally the reasons to delay an imaging test. For patients, the reactions to the tools were more positive. Patients valued written information and a signed agreement to delay the test. However, patients expressed that a strong desire for diagnostic imaging would likely over-ride any effect of written advice to delay the test. The term 'false alarm' to describe overdiagnosis was poorly understood by patients. CONCLUSIONS: GPs and patients agreed that a leaflet about overdiagnosis could support a delayed prescribing approach to imaging for low back pain. The Dialogue Sheet and 'Wait-and-see' Note were acceptable to patients but not to GPs.

Integrating relationship- and research-based approaches in Australian health promotion practice.

We examine the perspectives of health promotion practitioners on their approaches to determining health promotion practice, in particular on the role of research and relationships in this process. Using Grounded Theory methods, we analysed 58 semi-structured interviews with 54 health promotion practitioners in New South Wales, Australia. Practitioners differentiated between relationship-based and research-based approaches as two sources of knowledge to guide health promotion practice. We identify several tensions in seeking to combine these approaches in practice and describe the strategies that participants adopted to manage these tensions. The strategies included working in an evidence-informed rather than evidence-based way, creating new evidence about relationship-based processes and outcomes, adopting 'relationship-based' research and evaluation methods, making research and evaluation useful for communities, building research and evaluation skills and improving collaboration between research and evaluation and programme implementation staff. We conclude by highlighting three systemic factors which could further support the integration of research-based and relationship-based health promotion practices: (i) expanding conceptions of health promotion evidence, (ii) developing 'relationship-based' research methods that enable practitioners to measure complex social processes and outcomes and to facilitate community participation and benefit, and (iii) developing organizational capacity.

Medicine use of elderly Chinese and Vietnamese immigrants and attitudes to home medicines review.

There is a paucity of research into the perceptions of elderly Australian ethnic minorities towards public health services related to quality use of medicines. Among the six fastest growing ethnic groups in Australia, the Mandarin-speaking Chinese and Vietnamese constitute the largest elderly populations with poor English skills. This paper investigates the relationships of elderly Chinese and Vietnamese migrants with medicines, general practitioners and pharmacists, and how these relationships influence their awareness and attitudes of the home medicines review (HMR) program. Two semi-structured focus groups were held with a total of 17 HMR-eligible patients who have never received a HMR, one with Chinese and one with Vietnamese respondents, each in the respective community language. Confusion about medications and an intention to have a HMR were pronounced among all participants although none of them had heard of the program before participating in the focus groups. Respondents reported difficulties locating a pharmacist who spoke their native language, which contributed to an increased unmet need for medicine information. The Chinese group additionally complained about a lack of support from their general practitioners in relation to their medicine concerns and was adamant that they would prefer to have a HMR without the involvement of their general practitioner. Our results indicate a distinct HMR need but not use among elderly Chinese and Vietnamese eligible patients with poor English skills. Home medicines review service use and perceived medication problems are likely to improve with an increasing availability of bilingual and culturally sensitive health care providers.

Service quality in community pharmacy: an exploration of determinants.

BACKGROUND: Although various instruments have been developed to measure customer satisfaction with community pharmacy services, there is limited research regarding pharmacy staffs' understanding of service quality and its determinants. OBJECTIVES: This study aimed to explore the perceptions of pharmacy staff regarding the factors that constitute a high level of service quality using the service quality determinants proposed by the Conceptual Model of Service Quality. METHODS: Structured interviews were conducted with 27 pharmacy assistants and 6 pharmacists in 3 community pharmacies in Sydney. The interview questions focused on the participants' perceptions of consumer expectations, the translation of these perceptions into service quality specifications, the actual service delivery, and the communication to customers. RESULTS: From the pharmacy staff perspective, service quality is significantly limited by insufficient internal communication and control processes that impede role clarity and the resolution of conflicting role expectations among customer service personnel. Participants indicated that these problems could be alleviated through the implementation of more transparent, realistic, measurable, and accepted quality specifications by pharmacy management. CONCLUSIONS: The study indicates that the extent to which pharmacy management sets, maintains, and communicates service quality specifications to staff directly affects role clarity, role conflict, and organizational commitment among customer service staff, which in turn directly influence the level of service quality provided to the customers.

Consumer perspectives of the Australian Home Medicines Review Program: benefits and barriers.

BACKGROUND: The Australian Home Medicines Review (HMR) is a free consumer service to assist individuals living at home to maximize the benefits of their medicine regimen and prevent medication-related problems. It consists of a pharmacist reviewing a person's medicines and collaborating with the general practitioner to optimize the individual's medicine management. The uptake of this service has remained below the projected use, although the program has shown to successfully identify medication-related problems and improve drug knowledge and adherence of the patient. OBJECTIVES: This study investigates the perceived benefits and barriers of the patients regarding the HMR service who have used the service and who are eligible for it but have never used it. METHODS: Consumer perceptions were drawn from 14 semistructured focus groups, with patients and carers belonging to the general HMR target population and consumer segments that have been postulated to be underrepresented with regard to this service. RESULTS: The major benefits reported were acquisition of medicine information, reassurance, feeling valued and cared for, and willingness to advocate medication changes to the general practitioner. Perceived barriers were concerns regarding upsetting the general practitioner, pride and independence, confidence issues with an unknown pharmacist, privacy and safety concerns regarding the home visit, and lack of information about the program. Participants agreed that the potential benefits of the service outweighed its potential barriers. CONCLUSIONS: It is expected that direct-to-consumer promotion of HMRs would increase the uptake of this valuable service. It would be necessary to ensure that the process and benefits of the service are communicated clearly and sensitively to eligible patients and their carers to obviate common consumer misconceptions and/or barriers regarding the HMR service. Furthermore, any direct-to-consumer promotion of the service must enable patient/carer self-identification of eligibility.