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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: 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]

Background: Communicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications. Objective: The aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication. Methods: The study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis. Results: Data analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters. Conclusion: Older patients' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication. Patient or Public Contribution: Older adults, family members and health professionals volunteered to be interviewed and observed. [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: Design thinking is an iterative process that innovates solutions through a person‐centric approach and is increasingly used across health contexts. The person‐centric approach lends itself to working with groups with complex needs. One such group is families experiencing economic hardship, who are vulnerable to food insecurity and face challenges with child feeding. Objective: This study describes the application of a design thinking framework, utilizing mixed methods, including co‐design, to develop a responsive child‐feeding intervention for Australian families—'Eat, Learn, Grow'. Methods: Guided by the five stages of design thinking, which comprises empathizing, defining, ideating, prototyping, and testing. We engaged with parents/caregivers of a child aged 6 months to 3 years through co‐design workshops (n = 13), direct observation of mealtimes (n = 10), a cross‐sectional survey (n = 213) and semistructured interviews (n = 29). Findings across these methods were synthesized using affinity mapping to clarify the intervention parameters. Parent user testing (n = 12) was conducted online with intervention prototypes to determine acceptability and accessibility. A co‐design workshop with child health experts (n = 9) was then undertaken to review and co‐design content for the final intervention. Results: Through the design thinking process, an innovative digital child‐feeding intervention was created. This intervention utilized a mobile‐first design and consisted of a series of short and interactive modules that used a learning technology tool. The design is based on the concept of microlearning and responds to participants' preferences for visual, brief and plain language information accessed via a mobile phone. User testing sessions with parents and the expert co‐design workshop indicated that the intervention was highly acceptable. Conclusions: Design thinking encourages researchers to approach problems creatively and to design health interventions that align with participant needs. Applying mixed methods—including co‐design— within this framework allows for a better understanding of user contexts, preferences and priorities, ensuring solutions are more acceptable and likely to be engaged. [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]

Introduction: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. Methods: We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants. [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]

To elicit patients' views on whether they could contribute to improvements in their care by carrying their own health information to clinician encounters; and to consider the implications for the development of a patient-held health file (PHF). Increasing rates of chronic disease lead to health care being delivered by multiple care providers often at distributed geographic locations. As a way of increasing the availability of patient information to care providers our project will trial a PHF. Patients carry these files to doctors' appointments where clinicians record data for other doctors or the patient. Increasing the availability of patient information is anticipated to enhance the safety and quality of care delivery and improve health outcomes. Qualitative semi-structured interviews were conducted with 10 patients. Participants were evenly distributed in terms of gender, aged 60 years or greater and visited at least two specialists and one general practitioner. In this exploratory study, patients who were currently active in decision making about their own health already recorded some health information. They were receptive to carrying their information and thought they should take some responsibility for their health. Patients who were more passive in making decisions about their health did not perceive a need to carry their own information and felt that their doctors communicated adequately. Patient-held health files provide an opportunity for patients to access their health information. Such files have the potential to improve health outcomes for patients who adopt both active and passive roles in relation to their own health and engaging with their health information. [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: When handover is conducted at the patient's bedside, active patient participation can be encouraged, which may improve the safety and quality of care. There is a need for valid and reliable tools to measure patient perceptions of participation in bedside handover, to ensure the rising number of implementation and improvement efforts are consistently and effectively evaluated. The aim of this study is to systematically develop and evaluate the psychometric properties of a self‐report survey to measure patients' perceptions of participation in bedside handover. Methods: In Phase 1, our team developed a conceptual framework and item pool (n = 130). In Phase 2, content validity was assessed with four health consumers, four nurses and four researchers. Next, 10 current hospital inpatients tested the survey for end‐user satisfaction. In Phase 3, 326 inpatients completed the survey, allowing exploratory factor analysis, reliability analyses and convergent/divergent validity analyses to occur. Results: Phase 1 and 2 resulted in a 42‐item survey. In Phase 3, 321 surveys were available for analysis. Exploratory factor analysis revealed a three‐factor solution, with 24 items, which matched our conceptual framework. The three factors were: 'Conditions for patient participation in bedside handover', 'Level of patient participation in bedside handover' and 'Evaluation of patient participation in bedside handover'. There was strong evidence for factor reliability and validity. Additionally, the correlation between factors was strong. Conclusion: This study furthers our conceptual understanding by showing that nurse facilitating behaviours are a strong precursor for patient participation and perceived handover outcomes, justifying the need for nursing training. A robust survey has been developed to measure patient perceptions of participation in bedside handover, which can effectively evaluate this approach to care. Engaging consumers and nurses as research team members was invaluable in ensuring that the survey is acceptable for end‐users. Patient or Public Contribution: A health consumer and nurse partnered as members of the research team from study inception to dissemination. [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]

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: 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: 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 article presents a study regarding the role of asthma patients in multidisciplinary care (MDC). Semi-structured interviews with asthma patients from Sydney, New South Wales were conducted. Moreover, the key elements affecting the nature and development of health connections among patients were also discussed.

Background: Agencies promoting national health‐care accreditation reform to improve the quality of care and safety of patients are largely working without specific blueprints that can increase the likelihood of success. Objective: This study investigated the development and implementation of the Australian Health Service Safety and Quality Accreditation Scheme and National Safety and Quality Health Service Standards (the Scheme), their expected benefits, and challenges and facilitators to implementation. Methods: A multimethod study was conducted using document analysis, observation and interviews. Data sources were eight government reports, 25 h of observation and 34 interviews with 197 diverse stakeholders. Results: Development of the Scheme was achieved through extensive consultation conducted over a prolonged period, that is, from 2000 onwards. Participants, prior to implementation, believed the Scheme would produce benefits at multiple levels of the health system. The Scheme offered a national framework to promote patient‐centred care, allowing organizations to engage and coordinate professionals’ quality improvement activities. Significant challenges are apparent, including developing and maintaining stakeholder understanding of the Scheme's requirements. Risks must also be addressed. The standardized application of, and reliable assessment against, the standards must be achieved to maintain credibility with the Scheme. Government employment of effective stakeholder engagement strategies, such as structured consultation processes, was viewed as necessary for successful, sustainable implementation. Conclusion: The Australian experience demonstrates that national accreditation reform can engender widespread stakeholder support, but implementation challenges must be overcome. In particular, the fundamental role of continued stakeholder engagement increases the likelihood that such reforms are taken up and spread across health systems. [ABSTRACT FROM AUTHOR]

Context: People with chronic conditions who are often in contact with the health‐care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health‐care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers. Objective: To explore the views of CAM users with chronic conditions and identify their perspectives on the health system. Design and Setting: In‐depth interviews and a self‐administered questionnaire were used to collect data on care‐seeking, self‐management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia. Results: One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person‐centred approach, which was central to problems relating to individuals' clinical encounters as well as to health system design. Discussion and Conclusion: Participants' concerns suggest room for improvement in the Australian health system to better reflect patients' needs. A systems approach is needed to reorient health‐care practitioners to modify the organization of care because of the incentives embedded in the structure of the health‐care system. [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]

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]