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Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

Objectives: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Traditional approaches to system management are not suited to highly uncertain conditions. Hard system approaches with a top‐down management approach are often used to manage well‐defined systems that are not easily able to cope with uncertainty. Soft system approaches of the with bottom‐up or participative style may cause a lack of conformance to industry standards. Few studies have investigated these approaches within the context of COVID‐19 pandemic. Therefore, this paper aims to use the philosophy of Total Systems Intervention to investigate the applicability of an integrated management approach to cope with the uncertainty of COVID‐19. Three different countries from Europe, Oceania and Asia are selected as typical case studies to clarify the strengths and weaknesses of differing management approaches. The case studies demonstrate that using an integrated management approach can potentially assist decision‐makers to deal with crises and conclusively reveal the superiority of the integrated approach, independent of cultural milieu. [ABSTRACT FROM AUTHOR]

Introduction: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. Methods: We adapted a participatory research method (the World Café) to engage one local CALD community—the Macedonian community (Our bi‐cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)—to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. Results: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision‐making. Conclusion: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. Patient or Public Contribution: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school‐based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi‐cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing. [ABSTRACT FROM AUTHOR]

Introduction: Colorectal cancer (CRC) has the second highest cancer mortality rate in Australia. The Australian National Bowel Cancer Screening Program (NBCSP) aims to increase early detection of CRC by offering free Faecal Occult Blood Testing (FOBT), although uptake is low for culturally and linguistically diverse (CALD) groups. Aim of paper: To present data on trust and mistrust in the NBCSP by population groups with low uptake and thus to highlight areas in need of policy change. Methods: A qualitative study was undertaken in South Australia, involving interviews with 94 people from four CALD groups: Greek, Iranian, Anglo‐Australian, and Indigenous peoples. Results: Our study highlights the complexities of institutional trust, which involves considerations of trust at interpersonal, local and national levels. In addition, trust and mistrust was found in more abstract systems such as the medical knowledge of doctors to diagnose or treat cancer or the scientific procedures in laboratories to test the FOBTs. The object of institutional (mis)trust differed between cultural groups – Anglo‐Australian and Iranian groups indicated a high level of trust in the government, whereas Indigenous participants were much less trusting. Conclusion: The level and nature of trust in the screening process varied between the CALD groups. Addressing program misconceptions, clarifying the FOBT capabilities and involving medical services in collecting and transporting the samples may increase trust in the NBCSP. However, broader and more enduring mistrust in services and institutions may need to be dealt with in order to increase trust and participation. [ABSTRACT FROM AUTHOR]

Introduction: Culturally and linguistically diverse population groups disproportionately experience higher weight and other non–weight‐related discrimination in healthcare settings outside of their ancestral country. Little is known about the experiences of individuals with Arab heritage. This study aimed to qualitatively explore the intersectional weight‐related healthcare experiences of individuals of Arab heritage with higher weight in Australia. Methods: A general inductive enquiry approach was used. Purposive, convenience and snowball sampling was used to recruit individuals of Arab heritage residing in Australia. Individuals were invited to participate in an online semistructured interview. Interviews were recorded, transcribed and thematically analysed. Results: Fifteen participants took part in the study. Of these participants, 93% were female (n = 14), 80% were aged between 18 and 44 years (n = 12), 73% were university educated (n = 11), 53% were born outside of Australia (n = 8) and all were Muslim (n = 15). Four main themes were identified: (1) appearance‐based judgement, (2) generalised advice and assumptions, (3) cultural responsiveness and (4) healthcare system constraints. Conclusion: Individuals of Arab heritage with higher weight in Australia, namely, females, often perceive their healthcare experiences as dismissive of their cultural and religious needs and driven by causality assumptions around weight. It is crucial that care delivered encompasses cultural humility, is weight‐inclusive and acknowledges systemic constraints. Cultural safety training benchmarks, healthcare management reform and weight‐inclusive healthcare approaches are recommended to assist healthcare providers in delivering effective, holistic and culturally safe care. Patient or Public Contribution: Insights gained from conversations with Arab heritage community members with lived experiences regarding weight‐related healthcare encounters informed the study design and approach. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

Aim: To explore how undergraduate nursing students are assessed on nursing numeracy and medication calculations from the perspective of Australian nurse education leaders. Design: A qualitative study. Methods: Semi‐structured interviews were conducted with 17 nurse education leaders between November 2022 and January 2023. Braun and Clarke's six phases of thematic analysis were used to analyse the data. Results: Five key themes were identified: (i) high expectations to keep the public safe, (ii) diverse assessment formats, (iii) different ways of managing assessment integrity, (iv) assessment conditions incongruent to the clinical setting and (v) supporting struggling students. Conclusion: Nurse education leaders set high standards requiring students to achieve 100% in numeracy and medication calculation assessments, thus maintaining the reputation of nursing and patient safety. However, students struggled to meet this expectation. Diverse assessment formats were implemented, with some examination conditions contrary to clinical practice. Currently, there is no benchmark or independent point of registration examination in Australia, hence the problem is each university had a different standard to judge students' competence. Gaining insight into how these assessments are conducted provides an opportunity to work towards an evidence‐based model or benchmark for the assessment of numeracy. Implications for the Profession: Dosage errors in clinical practice threaten patient safety and the reputation of the nursing profession. The accuracy rate of calculations by undergraduate and registered nurses is deficient worldwide. This research highlights a major educational issue, that being the wide variation in how numeracy assessments are conducted with no clear pedagogical rationale for a standardised method. Such assessments would establish a national standard, contributing to quality assurance, the development of the nursing profession and improve patient safety. [ABSTRACT FROM AUTHOR]

Introduction: Globally, there is an increasing demand for quality medical rehabilitation services. This is the first article of a two‐part series showing the findings from the Rehabilitation Choices study in which the main aim was to understand the current landscape of decision‐making, enablers and barriers to access appropriate rehabilitation services in the Australian setting. In Part 1, these insights were sought from a healthcare professionals' perspective. Methods: This was an exploratory, qualitative study, using semi‐structured interviews with a discussion guide that was codesigned together with rehabilitation clinicians and rehabilitation researchers. Themes and sub‐themes were identified using an inductive approach. Results: We interviewed a heterogeneous group of 31 professionals who are involved in making referral decisions about rehabilitation or who design and deliver rehabilitation programs, including specialist rehabilitation physicians and other medical doctors across in‐patient, outpatient, and primary care settings, allied health professionals, rehabilitation service managers, nurses, multicultural health liaison officers and rehabilitation research scientists. Three key themes relevant to barriers and enablers to service access were identified from the data: defining rehabilitation; a lack of timely access to patient and rehabilitation service data; and patient diversity not expected by the system. Conclusions: Healthcare professionals who make decisions about rehabilitation referrals and services feel that it was necessary for them to keep up to date with information relating to rehabilitation services. There was some concern regarding what rehabilitation constituted and what services were available for different clinical indications. They also indicated that current systems did not consider diversity among patients' needs and goals. Their recommendations included the need for better communication pathways, improved referral systems and resources that could help provide best practice of rehabilitative care in the future. Patient or Public Contribution: Three study team members had a lived experience of rehabilitation as a patient or carer, and previous experience participating in qualitative research. They worked with the study team to codesign the recruitment strategy, participant‐facing communications, the interview discussion guide, and the approach to the conduct of activities with participants and in the interpretation and contextualization of findings and all were involved in writing this manuscript. [ABSTRACT FROM AUTHOR]

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [ABSTRACT FROM AUTHOR]

Exclusive breastfeeding for the first 6 months of life offers the recommended best start in the life for a newborn baby. Yet, in Australia only a small number of babies receive breast milk exclusively for the first 6 months. Reasons for the introduction of formula milk are multi‐factorial including access to appropriate support and the woman's experience of breastfeeding. The language and practices of health professionals can impact upon how a woman feels about breastfeeding and her breastfeeding body. One aspect of breastfeeding support that has had scarce attention in the literature is the language used by health professionals to describe the behaviour of the breastfeeding infant during the early establishment phase of breastfeeding. This paper reveals some of the ways in which midwives, lactation consultants and breastfeeding women describe the newborn baby during the first week after birth. The study was conducted at two maternity units in New South Wales. Interactions between midwives and breastfeeding women were observed and audio recorded on the post‐natal ward and in women's homes, in the first week after birth. The transcribed data were analysed using discourse analysis searching for recurring words, themes and metaphors used in descriptions of the breastfeeding baby. Repeated negative references to infant personality and unfavourable interpretations of infant behaviour influenced how women perceived their infant. The findings revealed that positive language and interpretations of infant breastfeeding behaviour emerged from more relationship‐based communication. [ABSTRACT FROM AUTHOR]

Context: In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants: A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results: Our data indicates there are 'silences' within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These 'silences' include what the patient 'is not told' by their clinician or 'does not hear' and what the patient feels they 'cannot say'. Discussion: Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on 'silences' and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The 'silences' within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions: Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution: This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists). [ABSTRACT FROM AUTHOR]

Background: Person‐centred goal planning is increasingly being incorporated into healthcare interventions. People experiencing severe and persistent mental illnesses (SPMIs) have high levels of co‐occurring health conditions, reducing their life expectancy when compared with the general population. As medications are commonly used in the treatment of SPMIs, community pharmacists are well‐placed to support the health and wellbeing of this population. Objectives: To examine pharmacists' and service users' experiences of goal planning as a component of a community pharmacy‐based health intervention for people experiencing SPMIs (PharMIbridge intervention). Methods: This study utilised a qualitative exploratory approach with an interpretive description method. Semistructured interviews were undertaken with community pharmacists (n = 16) and service user participants (n = 26) who had participated in pharmacist support services for people experiencing SPMIs (PharMIbridge intervention). Results: Four themes relating to goal planning were identified. First, goal planning provided purpose and motivation for participation in the intervention. Planning realistic goals was important but often challenging. Both pharmacists and service users highlighted the relational aspects of goal planning and how strong relationships supported positive behaviour change and outcomes. Finally, individualised and flexible approaches were important aspects of the intervention, ensuring goals were meaningful to service users. Conclusions: The findings from this study identified positive outcomes from the inclusion of goal‐planning processes in a community pharmacy‐based health intervention. Further research regarding tools, strategies or training that could support future goal‐planning interventions in primary healthcare is needed. Patient or Public Contribution: The PharMIbridge randomised controlled trial research team included lived experience members and was overseen by an expert panel that included members with a lived experience of mental illness and representatives from key organisations. The training provided to pharmacists was co‐designed and co‐delivered by the researchers and lived experience representatives, and pharmacists were supported by lived experience mentors. Service user participants were invited to participate in the interviews through a number of pathways (e.g., at the completion of the intervention, flyers). Those interested were provided with the full study participant information and provided with a $30 gift voucher at the conclusion of the interview. [ABSTRACT FROM AUTHOR]

Introduction: The implementation of radiation therapy advanced practice in Australia has not yet been broadly realised. With anticipated growing demands on cancer services, it is imperative to understand why this is the case, and to strategise a way forward. As a result, we explored the factors influencing the implementation of advanced practitioner radiation therapists (APRT) in Australia. The research outcome was a complex process of Navigating Uncertainty, which described the contextual, social and personal factors surrounding implementation successes and challenges. Further synthesis of the findings was undertaken to highlight the fundamental features influencing this process, with the intention to provide a useful understanding for practitioners seeking APRT implementation. Methods: Data were collected through national online focus groups and case studies with 53 participants. Analysis identified a constructivist grounded theory process of Navigating Uncertainty. Further analysis of the categories and properties of the process was undertaken to synthesise findings at a higher level of abstraction. Results: Four overarching and intertwined factors were influencing the implementation of APRT. Uncertainty occurred when practitioners attempted to conceptualise and assimilate the new role into the workplace. Power was apparent in the advocacy and legitimisation of the APRT by centre leaders. Value was vital to achieving purposeful outcomes. Identity was evident in the personal transition of the APRT, and in the boundary work with others. Conclusion: Recognising and negotiating uncertainty, power, value and identity is essential for APRT implementation strategies to succeed. A framework to guide practitioners towards the implementation of APRT has been described that embodies these factors. [ABSTRACT FROM AUTHOR]

Over the past decade or more Australia amongst other jurisdictions has experienced substantial reforms to auditing regulation in an effort to boost public confidence in the auditing profession. This paper aims to examine whether these changes in the Australian regulatory environment for audits have (a) provided enhanced confidence in reported financial data, (b) impacted audit costs and (c) not limited competition in the market for audit services. Using qualitative interview data, this study reports on the perceptions of auditors, auditing standard setters and regulators in relation to the CLERP 9 reforms to the Australian auditing regime in the later part of the 2000s. A theoretical framework is developed to evaluate whether these reforms are substantive enough in nature to effect public confidence in reported financial data and market competition in audits. [ABSTRACT FROM AUTHOR]

ABSTRACT The moral importance of the 'intention-foresight' distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating 'slow euthanasia'. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some 'mental gymnastics,' the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of 'terminal' sedation - cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles. [ABSTRACT FROM AUTHOR]

Objectives: Peer‐to‐peer communication approaches have been previously described as the 'power of personal referral'. Rather than relying on official channels of information, peer‐to‐peer communication may have a role in supporting changes in understanding and possibly behaviours. However, in emergency or pandemic situations, there is currently limited understanding of whether community members feel comfortable speaking about their vaccine experiences or advocating to others. This study explored the perceptions of COVID‐19 vaccinated and unvaccinated Australian adults regarding their preferences and opinions about peer‐peer communication and other vaccine communication strategies. Study Design: Qualitative interview research. Methods: In‐depth interviews were conducted in September 2021 with 41 members of the Australian community. Thirty‐three participants self‐identified as being vaccinated against COVID‐19, while the remainder were not vaccinated at the time or did not intend on receiving a COVID vaccine. Results: Amongst those who were vaccinated, participants spoke about being willing to promote the vaccine and correct misinformation and felt empowered following their vaccination. They highlighted the importance of peer‐to‐peer communication and community messaging, expressing the need for both strategies in an immunisation promotional campaign, with a slight emphasis on the persuasive power of communication between family and friends. However, those who were unvaccinated tended to dismiss the role of community messaging, commenting on a desire not to be like one of the many who listened to the advice of others. Conclusion: During emergency situations, governments and other relevant community organisations should consider harnessing peer‐to‐peer communication amongst motivated individuals as a health communication intervention. However further work is needed to understand the support that this constituent‐involving strategy requires. Patient or Public Contribution: Participants were invited to participate through a series of online promotional pathways including emails and social media posts. Those who completed the expression of interest and met the study criteria were contacted and sent the full study participant information documentation. A time for a 30 min semi‐structured interview was set and provided with a $50 gift voucher at the conclusion. [ABSTRACT FROM AUTHOR]

Introduction: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. Methods: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision‐making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. Results: Overall, participants supported making MC legally accessible as a prescription‐only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict—if found effective—that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. Conclusions: These findings suggest that—despite a relatively robust universal healthcare system—Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears—and the systems sustaining them—may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. Patient or Public Contribution: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision‐making, perceptions and experiences. [ABSTRACT FROM AUTHOR]

Objective: Health consumers (patients, their family, friends and carers) are frequently using their smartphones to record hospital clinical encounters. However, there is limited research which has explored the social interaction surrounding this behaviour. Understanding the consumer perspective is key to informing policy and practice. This study explored consumer attitudes and experiences regarding patient‐led recordings. Methods: Semistructured interviews were undertaken with 20 hospital consumers. Participants were recruited via advertising, posters and invitation letters. Interviews were digitally recorded and transcribed. Data were analysed using thematic analysis. Findings: Four main themes were identified relating to participant perspectives of patient‐led recordings: (1) consumers viewed clinician consent as important, although they reported different experiences of the consent process, (2) consumers indicated that a clinician refusing the recording had the potential to undermine the consumer–clinician relationship, (3) consumers were both uninformed and misinformed regarding relevant policy and legislation and (4) consumers expressed a number of expectations regarding their rights to record and of the health service in supporting this practice. Conclusion: Consumers want to record their clinical encounters with the consent of their clinician but are unprepared to navigate consent discussions. Health services and clinicians should inform consumers who want to record about their rights and responsibilities, to support the consent process and safe recording environments. Clinician refusal to consent to a patient‐led recording may not lead to increased covert recording; however, clear communication about the reasons for refusing a recording is needed to protect the consumer–clinician relationship. Patient or Public Contribution: A health consumer was part of the research team and was involved in all stages of this study, including the design, data analysis and reviewing of the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: This study sought to identify how diabetes organisations conceptualize the problem of diabetes‐related stigma and how this shapes the selection of stigma‐reduction interventions. Methods: A qualitative deliberative democratic methodology was used to access an informed dialogue about what should be done by diabetes organisations to address diabetes‐related stigma, drawing from the perspectives of board members, healthcare services staff, and communications and marketing staff from a single state‐wide diabetes organisation in Australia (n = 25). Results: Participants navigated the stigma concept along two axes: one that drew attention to either disease attributes or personal moral attributes as the object of stigmatisation, and one that positioned stigma as an individual or structural problem. This shaped the selection of stigma‐reduction interventions, which included interventions to: (i) reduce the prevalence of stigmatized attributes, (ii) correct misunderstandings about diabetes, (iii) modify representations of persons with diabetes, (iii) enhance coping amongst persons with diabetes and (iv) make healthcare more person‐centred and democratic. Conclusion: This study identified several grievances with 'diabetes‐related stigma', which are grievances that can be conceptualized and addressed at both individual and structural levels, and involve correcting misinformation about diabetes or challenging and communicating alternative representations of persons living with diabetes. Patient or Public Contribution: The organisation's management and board were consulted throughout all stages of research development, analysis and reporting. The information and vignettes presented to participants drew from illness narratives obtained from earlier research involving adults with type 2 diabetes. Research participants included adults with various diabetes types. [ABSTRACT FROM AUTHOR]

Background: There is a need for effective health service solutions to provide greater structure and support for implementing evidence‐based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. Objectives: To determine patients' perceived needs and barriers to best‐practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the 'idea generation' for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. Design: We conducted a combination of focus groups and in‐depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. Setting and Participants: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non‐English audio recordings were translated and transcribed by bilingual researchers. Results: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. Discussion and Conclusion: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self‐management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. Patient or Public Contribution: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. [ABSTRACT FROM AUTHOR]

Background: Pregnant and breastfeeding women's use of complementary medicine products (CMPs) is common, and possibly associated with autonomous health care behaviours. However, the health literacy levels and health locus of control (HLOC) beliefs of women who use CMPs in pregnancy and lactation have not been previously assessed in a large Australian sample. Aim: The aim of this study is to determine the health literacy levels and HLOC beliefs of women who use CMPs in pregnancy and lactation and determine the types of CMPs used. Methods: A cross‐sectional, national, online survey of Australian pregnant or breastfeeding women aged 18 years and older, and currently using CMPs was conducted. Results: A total of 810 completed surveys (354 pregnant and 456 breastfeeding women) were analysed. Most had adequate functional health literacy levels (93.3%). Health care practitioners (HCPs) HLOC mean scores were the highest for the sample, followed by Internal HLOC beliefs mean scores. Almost all (n = 809) took at least one dietary supplement, the most popular being pregnancy and breastfeeding multivitamins, iron supplements and probiotics. Use was generally in line with clinical recommendations, except for low rates of iodine supplementation. Herbal medicine use was lower for the total sample (57.3%, n = 464), but significantly higher (p <.0001) for the breastfeeding cohort, with consumers taking one to four herbal medicines each. The most popular herbs were raspberry leaf, ginger, peppermint and chamomile (pregnant respondents) and chamomile, ginger and fenugreek (breastfeeding respondents). Conclusions: Respondents were health literate, with high scores for Internal and HCP HLOC scales, suggesting that they are likely to demonstrate self‐efficacy, positive health behaviours and work well in partnership with HCPs. HCPs can facilitate discussions with pregnant and breastfeeding women using CMPs, while considering women's health literacy levels, health beliefs and goals. [ABSTRACT FROM AUTHOR]

Background: Refugees and asylum seekers arrive in the Australian community with complex health needs and expectations of healthcare systems formed from elsewhere. Navigating the primary healthcare system can be challenging with communication and language barriers. In multicultural societies, this obstacle may be removed by accessing language‐concordant care. Emerging evidence suggests language‐concordance is associated with more positive reports of patient experience. Whether this is true for refugees and asylum seekers and their expectation of markers of quality patient‐centred care (PCC) remains to be explored. This study aimed to explore the expectations around the markers of PCC and the impacts of having language‐concordant care in Australian primary healthcare. Methods: We conducted semi‐structured individual in‐language (Arabic, Dari, and Tamil) remote interviews with 22 refugee and asylum seekers and 9 general practitioners (GPs). Interview transcripts were coded inductively and deductively, based on the research questions, using Thematic Analysis. Extensive debriefing and discussion took place within the research team throughout data collection and analysis. Results: Community member expectations of markers of PCC are constantly evolving and adapting based on invisible and visible actions during clinical encounters. Challenges can occur in the clinical encounter when expectations are 'unsaid' or unarticulated by both community members and GPs due to the assumption of shared understanding with language concordant care. Expectations of what constitutes satisfactory, quality PCC are dynamic outcomes, which are influenced by prior and current experiences of healthcare. Conclusion: This study highlights the importance of understanding that language concordant care does not always support aligned expectations of the markers of quality PCC between community members and their GP. We recommend that GPs encourage community members to provide explicit descriptions about how their prior experiences have framed their expectations of what characterizes quality PCC. In addition, GPs could develop a collaborative approach, in which they explain their own decision‐making processes in providing PCC to refugees and asylum seekers. Patient or Public Contribution: Bilingual researchers from multicultural backgrounds and experience working with people from refugee backgrounds were consulted on study design and analysis. This study included individuals with lived experiences as refugees and asylum seekers and clinicians as participants. [ABSTRACT FROM AUTHOR]

Aim: Centring on nursing homes, we analysed the implementation process of a tablet‐ and videoconferencing‐based telemedicine application from the perspectives of management, nursing staff and physicians. Design: We used a qualitative design based on interviews to explore diverse perspectives on the implementation of telemedicine. Methods: We conducted fourteen face‐to‐face or online interviews with a purposeful sample of five managers, six nurses and three general practitioners treating residents in Austrian nursing homes during the COVID‐19 pandemic. We condensed data using thematic analysis. Results: Nursing home management implemented telemedicine rapidly, using a top‐down approach met with ambivalence by staff. On the part of nurses, their professional understanding of person‐centred care was challenged. Telemedicine also impacted cooperation between nurses and physicians, influencing their respective understanding of their roles. Working experience with digital nursing documentation had a positive effect on users' acceptance of the telemedicine solution. [ABSTRACT FROM AUTHOR]

This study investigates health professionals' reactions to patients' perceptions of health issues - a little-researched topic vital to the reform of the care of chronic illness. Focus groups were undertaken with doctors, nurses, allied health staff and pharmacists ( n = 88) in two Australian urban regions. The focus groups explored responses to patient experiences of chronic illness (COPD, Diabetes, CHF) obtained in an earlier qualitative study. Content analysis was undertaken of the transcripts assisted by NVivo7 software. Health professionals and patients agreed on general themes: that competing demands in self-management, financial pressure and co-morbidity were problems for people with chronic illness. However where patients and carers focused on their personal challenges, health professionals often saw the patient experience as a series of failures relating to compliance or service fragmentation. Some saw this as a result of individual shortcomings. Most identified structural and attitudinal issues. All saw the prime solution as additional resources for their own activities. Fee for service providers (mainly doctors) sought increased remuneration; salaried professionals (mainly nurses and allied health professionals) sought to increase capacity within their professional group. Professionals focus on their own resources and the behaviour of other professionals to improve management of chronic illness. They did not factor information from patient experience into their views about systems improvement. This inability to identify solutions beyond their professional sphere highlights the limitations of an over-reliance on the perspectives of health professionals. The views of patients and carers must find a stronger voice in health policy. [ABSTRACT FROM AUTHOR]

Background: People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health‐care providers to manage their health. Objective: To elucidate people with MS' experiences of accessing health care during the COVID‐19 pandemic in Australia. Design: A qualitative study involving semi‐structured interviews and thematic analysis. Settings and participants: Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. Results: Participants were aware that having MS made them more vulnerable to contracting COVID‐19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face‐to‐face consultation. Benefits of telehealth consultations included improved access, convenience and being contact‐free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health‐care routines. Discussion and conclusion: Personal risk assessment and trust in health‐care professionals are determinants of the mode through which people with MS accessed health care during the COVID‐19 pandemic. Telehealth has been a valuable tool to mitigate COVID‐19 transmission through enabling contact‐free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. Patient or public contribution: This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers. [ABSTRACT FROM AUTHOR]

Background: Opportunities for cancer survivors' employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective: This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method: Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results: Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions: Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution: This study included cancer survivors and HCPs as investigators, authors and participants. [ABSTRACT FROM AUTHOR]

Aims: One tool for protecting quality use of medicines in hospitals is a drug and therapeutics committee (DTC) that oversees medicines availability. Pharmaceutical industry marketing to prescribers is associated with less appropriate prescribing and increased costs. There is little data on decision‐making practices of DTCs so it is unknown whether or how they might be vulnerable to pharmaceutical industry influence. This project explores DTC decision‐making with a focus on how pharmaceutical industry influence on access and use of medicines is identified and managed. Methods: We used a qualitative methodology with individual interviews of 29 participants who were current or recent members of public hospital DTCs across New South Wales, Australia. Participants included medical, pharmacy and nursing staff and 1 citizen. Committees were linked to specific hospitals or regions, and some were affiliated with paediatric, neonatal, rural or mental health services. Results: Drug committee processes for oversight of medicines in public hospitals are vulnerable to pharmaceutical industry influence at several points. Applications for formulary additions are sometimes initiated and completed by company representatives. Conflict of interest disclosures among applicants and committee members may be incomplete. In some institutions, medicines are available from pharmaceutical companies without committee review, including through free samples and industry‐supported medicines access programmes. Participants noticed the presence and impact of pharmaceutical company marketing activities to local clinicians, resulting in increased prescriber demand for products. Conclusion: Improved DTC practices and review of hospital policies concerning pharmaceutical marketing activities might preserve the independence of evidence‐based decision‐making for safe, cost‐effective prescribing. [ABSTRACT FROM AUTHOR]

Background: Adherence to ADHD medication is a complex phenomenon as the decision to adhere is influenced by a range of factors. To design tailored interventions to promote adherence, it is important to understand the factors that influence adherence in the context of its three phases: initiation, implementation and discontinuation. Objective: The objective of this study was to explore the phase‐specific factors that influence adherence to medication in adults who have a diagnosis of ADHD. Methods: Three focus groups (FGs) were conducted with twenty adults with ADHD in different metropolitan areas of Sydney, Australia. FGs were transcribed verbatim and thematically analysed. Results: Participants' decision to initiate medication (the initiation phase) was influenced by their perceived needs (desire to improve academic and social functioning) and concerns (fear of side‐effects) about medication following a similar process as defined by the Necessity‐Concerns Framework (NCF). The balance between benefits of medication (needs) and side‐effects (concerns) continued to determine participants' daily medication‐taking (the implementation phase) and persistence (or discontinuation) with their medication. Forgetfulness and stigma were reported as concerns negatively impacting the implementation phase, while medication cost and dependence influenced the discontinuation phase of adherence. Conclusions: Adults' decision to initiate, continue or discontinue medication is influenced by a range of factors; some are unique to each phase while some are common across the phases. Participants balanced the needs for the medication against their concerns in determining whether to adhere to medication at each phase. It appears that the NCF has applicability when decision making about medication is explored at the three phases of adherence. [ABSTRACT FROM AUTHOR]

Background: Consumer genomic testing for nutrition and wellness, (nutritional genomics), is becoming increasingly popular. Concurrently, health‐care practitioners (HPs) working in private practice (including doctors interested in integrative medicine, private genetic counsellors, pharmacists, dieticians, naturopaths and nutritionists) are involved as test facilitators or interpreters. Objective: To explore Australian consumers' and HPs' experiences with nutrigenomic testing. Method: Semi‐structured in‐depth interviews were conducted using predominantly purposive sampling. The two data sets were analysed individually, then combined, using a constant comparative, thematic approach. Results: Overall, 45 interviews were conducted with consumers (n = 18) and HPs (n = 27). Many of the consumer interviewees experienced chronic ill‐health. Nutrigenomic testing was perceived as empowering and a source of hope for answers. While most made changes to their diet/supplements post‐test, self‐reported health improvements were small. A positive relationship with their HP appeared to minimize disappointment. HPs' adoption and views of nutrigenomic testing varied. Those enthusiastic about testing saw the possibilities it could offer. However, many felt nutrigenomic testing was not the only 'tool' to utilize when offering health care. Discussion: This research highlights the important role HPs play in consumers' experiences of nutrigenomics. The varied practice suggests relevant HPs require upskilling in this area to at least support their patients/clients, even if nutrigenomic testing is not part of their practice. Patient or public contribution: Advisory group included patient/public group representatives who informed study design; focus group participants gave feedback on the survey from which consumer interviewees were sourced. This informed the HP data set design. Interviewees from HP data set assisted with snowball sampling. [ABSTRACT FROM AUTHOR]

Background: More than half of Australian adults manage one or more chronic conditions through ongoing interactions with general practitioners (GPs). Their experience of general practice interactions has important implications for their health outcomes and is thus important to explore in‐depth. Consumer expectations have emerged as a key consideration in this regard. How well they met in care settings can inform consumers' satisfaction and response to the care received. However, consumer expectations in Australian general practice are not well researched. Objective: To identify key consumer expectations in clinical interactions in Australian general practice based on consumer and GP perspectives. Design: Qualitative, phenomenological approach using thematic analysis of semi‐structured interviews. Setting and participants: Thirty‐one participants: 18 patients with one or more chronic (persisting > 6 months) conditions, 10 GPs and 3 GP registrars in Sydney, Australia. Results: Consumer expectations were strongly related to the context of their ongoing therapeutic relationship with a regular GP. Themes relating to some of the most commonly reported consumer expectations were as follows: (a) the importance of longevity and continuity; (b) having good rapport; (c) GP's respect for consumer opinions and expertise; (d) having effective communication; and (e) addressing mental health. Conclusion: Australian GPs and consumers prioritize a positive, long‐term clinical relationship in which they respect one another and can communicate their expectations freely. This has implications for consumer satisfaction and in turn ensuring relational continuity, which is particularly relevant to the ongoing care and management of consumers with chronic conditions. [ABSTRACT FROM AUTHOR]

Background: Navigating treatment pathways remains a challenge for populations with complex needs due to bottlenecks, service gaps and access barriers. The application of novel methods may be required to identify and remedy such problems. Objective: To demonstrate a novel approach to identifying persistent service gaps, generating potential solutions and prioritizing action. Design: Co‐creation and multi‐criteria decision analysis in the context of a larger, mixed methods study. Setting and participants: Community‐dwelling sample of older women living alone (OWLA), residing in Melbourne, Australia (n = 13‐37). Convenience sample of (n = 11) representatives from providers and patient organizations. Interventions: Novel interventions co‐created to support health, well‐being and independence for OWLA and bridge missing links in pathways to care. Main outcome measures: Performance criteria, criterion weights , performance ratings, summary scores and ranks reflecting the relative value of interventions to OWLA. Results: The co‐creation process generated a list of ten interventions. Both OWLA and stakeholders considered a broad range of criteria when evaluating the relative merits of these ten interventions and a "Do Nothing" alternative. Combining criterion weights with performance ratings yielded a consistent set of high priority interventions, with "Handy Help," "Volunteer Drivers" and "Exercise Buddies" most highly ranked by both OWLA and stakeholder samples. Discussion and conclusions: The present study described and demonstrated the use of multi‐criteria decision analysis to prioritize a set of novel interventions generated via a co‐creation process. Application of this approach can add community voice to the policy debate and begin to bridge the gap in service provision for underserved populations. [ABSTRACT FROM AUTHOR]

Background: A large proportion of ambulance callouts are for men with mental health and/or alcohol and other drug (AOD) problems, but little is known about their experiences of care. This study aimed to describe men's experiences of ambulance care for mental health and/or AOD problems, and factors that influence their care. Methods: Interviews were undertaken with 30 men who used an ambulance service for mental health and/or AOD problems in Australia. Interviews were analysed using the Framework approach to thematic analysis. Results: Three interconnected themes were abstracted from the data: (a) professionalism and compassion, (b) communication and (c) handover to emergency department staff. Positive experiences often involved paramedics communicating effectively and conveying compassion throughout the episode of care. Conversely, negative experiences often involved a perceived lack of professionalism, and poor communication, especially at handover to emergency department staff. Conclusion: Increased training and organizational measures may be needed to enhance paramedics' communication when providing care to men with mental health and/or AOD problems. [ABSTRACT FROM AUTHOR]

The mass media is replete with all kinds of advice, products and ideas about 'motherhood' with advertising being a major source of information on the latest products and consumer trends. Advertising is a key means of promoting ideas about infant feeding, and yet, there has been little in the way of critical analyses of breast pump advertisements in order to reveal the kinds of messages they convey about this method of feeding. This article makes an important step towards addressing this gap through analysing three advertisements for breast pumps from a popular Australian magazine for mothers. We utilize a social semiotic framework to investigate not just what choices are made in the design of the ads but also what those choices mean in terms of the overall message of the ads. Our analysis identifies three core messages: 'breastfeeding and breast pumping are the same with the purpose being to produce breast milk only', 'using breast pumps facilitates quality time with the baby' and 'mothers need outside expertise (including breast pumps) to ensure baby's development'. We believe it is important for those who provide information and support for breastfeeding women to be aware of the subtle, naturalized messages that ads convey so that they may better understand what may be underlying women's decisions regarding methods of infant feeding. © 2016 John Wiley & Sons Ltd [ABSTRACT FROM AUTHOR]

The article presents the study on the health and services usage among old age Australian war veterans who are receiving health care support from the Australian government. Qualitative data gathering was designed and provide information on the group's community living, utilization of services, and the perceived burden of their family members and friends. Results were outlined and conclude the participants valuation of control to maximize and maintain their independence in their daily living.

Background and objective: Children from culturally and linguistically diverse (CALD) backgrounds are at risk of having developmental problems go undetected prior to starting school, and missing out on early intervention. Our aim was to explore the family and service characteristics, beliefs and experiences that influence the journey of families from CALD backgrounds in accessing developmental surveillance (DS) and early intervention services in south‐eastern Sydney, Australia. Design, setting and participants: This qualitative study used in‐depth interviews conducted with 13 parents from CALD backgrounds and 27 health and early childhood professionals in Sydney. The Andersen Behavioural Model of Health Service Use (BM) was the underlying theoretical framework for thematic analysis. Results and discussion: Family and service knowledge about early childhood development (ECD), community attitudes, social isolation and English language proficiency were dominant themes that impacted on the probability of families accessing services in the first place. Those that impeded or facilitated access were resources, extended family and social support, information availability, competing needs, complex service pathways and community engagement. There were variable practices of early detection through DS. Children from CALD backgrounds with developmental problems were perceived to miss out on DS and early intervention despite language delay being a key issue identified by participants. Conclusion: This study highlights the importance of increased community and family awareness and professional training in ECD; better coordination of health and early childhood services, with simpler referral pathways to early intervention to prevent children from CALD backgrounds ‘slipping through the net’. [ABSTRACT FROM AUTHOR]

The article presents the research that explores on the perspectives of African Americans and ethnic minority patients on the self-management of diabetes in Great Britain. The topics discussed include the barriers they experienced in managing their ailments and the importance of their insights in improving the healthcare services and policies.

Background Following a workshop with people with multiple conditions, the Chronic Illness Alliance undertook a literature review to explore current literature about multiple conditions. Methods The literature search was performed using Medline, CINAHL, Google Scholar and Cochrane Library employing an extensive list of search terms and limited to English language journals between 1999 and 2009. Inclusion criteria for articles were those articles focussing on issues identified by consumers with more than one chronic illness and the health services working with them. Results The results reported in this article are definitions of multiple conditions, safety and quality of services, risks and benefits of treatments for multiple and rare conditions and coordination of services. Discussion The impact of multiple conditions or multimorbidities on health services has been researched internationally and identifies the barriers to good health care when multiple conditions are not recognized. While the issues for consumers with more than one condition are not well recognized, the barriers identified by the literature are of great importance to consumers. Conclusions This review demonstrates that services and policies in Australia require specific reforms to better meet the needs of people with multiple conditions. [ABSTRACT FROM AUTHOR]

Context Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so. Objective To describe motivation towards or away from self-management in a diverse group of older Australians with diabetes, chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) and suggest policy interventions to increase patient motivation to manage effectively. Design Content and thematic analyses of in-depth semi-structured interviews. Participants were asked to describe their experience of having chronic illness, including experiences with health professionals and health services. Secondary analysis was undertaken to expose descriptions of self-management behaviours and their corresponding motivational factors. Participants Health service users with diabetes, COPD and/or CHF ( N = 52). Results Participant descriptions exposed internal and external sources of motivation. Internal motivation was most often framed positively in terms of the desire to optimize health, independence and wellness and negatively in terms of avoiding the loss of those attributes. External motivation commonly arose from interactions with family, carers and health professionals. Different motivators appeared to work simultaneously and interactively in individuals, and some motivators seemed to be both positive and negative drivers. Conclusion Successful management of chronic illness requires recognition that the driving forces behind motivation are interconnected. In particular, the significance of family as an external source of motivation suggests a need for increased investment in the knowledge and skill building of family members who contribute to care. [ABSTRACT FROM AUTHOR]

The article discusses research which was conducted to investigate patients' intermittent allergic rhinitis symptoms, triggers and strategies to control rhinitis symptoms and to measure patients' medication adherence. Researchers evaluated 124 patients over the course of 10 days. They found that patients revealed 620 symptoms and 357 triggers, that they used 579 treatment strategies and that only 36% of patients adhered fully to their medication regimens.

Internationally, women give mixed reports regarding professional support during the early establishment of breastfeeding. Little is known about the components of midwifery language and the support practices, which assist or interfere with the early establishment of breastfeeding. In this study, critical discourse analysis has been used to describe the language and practices used by midwives when supporting breastfeeding women during the first week after birth. Participant observation at two geographically distant Australian health care settings facilitated the collection of 85 observed audio-recorded dyadic interactions between breastfeeding women and midwives during 2008-2009. Additionally, 23 interviews with women post discharge, 11 interviews with midwives and four focus groups (40 midwives) have also been analysed. Analysis revealed three discourses shaping the beliefs and practices of participating midwives. In the dominant discourse, labelled 'Mining for Liquid Gold', midwives held great reverence for breast milk as 'liquid gold' and prioritised breastfeeding as the mechanism for transfer of this superior nutrition. In the second discourse, labelled 'Not Rocket Science', midwives constructed breastfeeding as 'natural' or 'easy' and something which all women could do if sufficiently committed. The least well-represented discourse constructed breastfeeding as a relationship between mother and infant. In this minority discourse, women were considered to be knowledgeable about their needs and those of their infant. The language and practices of midwives in this approach facilitated communication and built confidence. These study findings suggest the need for models of midwifery care, which facilitate relationship building between mother and infant and mother and midwife. [ABSTRACT FROM AUTHOR]

Introduction This study explores what types of information obese individuals search for on the Internet, their motivations for seeking information and how they apply it in their daily lives. Method In-depth telephone interviews with an Australian community sample of 142 individuals with a BMI ≥ 30 were conducted. Theoretical, purposive and strategic samplings were employed. Data were analysed using a constant comparative method. Results Of the 142 individuals who participated in the study, 111 (78%) searched for information about weight loss or obesity. Of these, about three quarters searched for weight loss solutions. The higher the individual's weight, the more they appeared to search for weight loss solutions. Participants also searched for information about health risks associated with obesity ( n = 28), how to prevent poor health outcomes ( n = 30) and for peer support forums with other obese individuals ( n = 25). Whilst participants visited a range of websites, including government-sponsored sites, community groups and weight loss companies, they overwhelmingly acted upon the advice given on commercial diet websites. However, safe, non-judgemental spaces such as the Fatosphere (online fat acceptance community) provided much needed solidarity and support. Conclusions The Internet provides a convenient source of support and information for obese individuals. However, many turn to the same unsuccessful solutions online (e.g. fad dieting) they turn to in the community. Government and community organisations could draw upon some lessons learned in other consumer-driven online spaces (e.g. the Fatosphere) to provide supportive environments for obese individuals that resonate with their health and social experiences, and address their needs. [ABSTRACT FROM AUTHOR]

Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Participants' descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants' endorsement of physicians as decision makers rested upon physicians' enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. When patients' and physicians' understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making. [ABSTRACT FROM AUTHOR]

Shared Decision Making (SDM) is widely accepted as the preferred method for reaching treatment decisions in the oncology setting including those about clinical trial participation: however, there is some disagreement between researchers over the components of SDM. Specific standardized coding systems are needed to help overcome this difficulty. The first objective was to describe the development of an oncology specific SDM coding system, the DAS-O. The second objective was to provide reliability and validity data supporting the DAS-O. Consultation data were available from tertiary cancer center out patient oncology clinics in: Australia, New Zealand (ANZ), Switzerland, Germany and Austria (SGA). Patients were women with a confirmed diagnosis of early stage breast cancer. Reliability data were from 18 randomly selected coded transcripts drawn from ANZ and SGA. Concurrent validity data are from 55 (ANZ) consultations. Inter and Intra rater reliability data was evaluated using Kappa correlation statistics and correlation coefficients. Correlation coefficients were used to assess concurrent validity between the DAS-O and two other SDM coding systems, OPTION and DSAT. Inter and Intra rater reliability for the system were high with average Kappas of 0.58 and 0.65 respectively. Correlation coefficients between DAS-O and OPTION was 0.73 and >0.5 for DSAT. We have developed a reliable and valid coding system for identifying and rating the quality of SDM in breast cancer consultations. [ABSTRACT FROM AUTHOR]

Objective To develop an in-depth picture of both lived experience of obesity and the impact of socio-cultural factors on people living with obesity. Design Qualitative methodology, utilizing in-depth semi-structured interviews with a community sample of obese adults (body mass index ≥30). Community sampling methods were supplemented with purposive sampling techniques to ensure a diverse range of individuals were included. Results Seventy-six individuals (aged 16–72) were interviewed. Most had struggled with their weight for most of their lives ( n = 45). Almost all had experienced stigma and discrimination in childhood ( n = 36), as adolescents ( n = 41) or as adults ( n = 72). About half stated that they had been humiliated by health professionals because of their weight. Participants felt an individual responsibility to lose weight, and many tried extreme forms of dieting to do so. Participants described an increasing culture of ‘blame’ against people living with obesity perpetuated by media and public health messages. Eighty percent said that they hated or disliked the word obesity and would rather be called fat or overweight. Discussion and Conclusion There are four key conclusions: (i) the experiences of obesity are diverse, but there are common themes, (ii) people living with obesity have heard the messages but find it difficult to act upon them, (iii) interventions should be tailored to address both individual and community needs and (iv) we need to rethink how to approach obesity interventions to ensure that avoid recapitulating damaging social stereotypes and exacerbating social inequalities. [ABSTRACT FROM AUTHOR]