Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study.

BACKGROUND: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. DESIGN: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. SETTING/PARTICIPANTS: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. RESULTS: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. CONCLUSIONS: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches.

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.

Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

Patient-centred care and patient autonomy: doctors' views in Chinese hospitals.

BACKGROUND: Patient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients' trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of patient-centred care among doctors in the Chinese public hospitals. METHODS: A quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China. RESULTS: In total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes. CONCLUSION: The study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals.

Consulting a Victorian Aboriginal community about their oral health.

BACKGROUND: The legacy of colonisation, assimilation, racism and victim blaming has created inequality in health for Aboriginal people, reflected in their oral health status. Despite the existence of community dental services, oral disease levels continue to be of concern. This study, initiated by a rural Victorian ACCHO (Aboriginal Community Controlled Health Organisation), aimed to consult their community about the barriers to and enablers of oral health and understand their lived experiences with dental services. METHODS: Using an Aboriginal knowledge framework and collaborative approach involving an Aboriginal researcher and Community Mentor, this study consulted an ACCHO community about their oral health. Following community engagement, 21 community members participated in digitally recorded yarning circles and semi-structured interviews. RESULTS: Themes emerging from the data included dental care history and past experiences involving pain and shame, the value of having community-centred services and engagement with patients and the community. DISCUSSION: Experiences of dental care are often related to pain driving attendance resulting in experiences that multiply fear and anxiety. While community-based care was considered a strength, approaches to individual dental care often resulted in increasing shame and diminishing trust. Increasing cultural safety and participatory approaches to designing and delivering dental care may increase engagement and trust. CONCLUSIONS: Important gaps in cultural and clinical understanding between the community and dental service providers have been identified. These findings will be used to inform the delivery of dental services and to develop oral health promotion programs at the ACCHO, and cultural safety preparation for student dental practitioners.

Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography.

INTRODUCTION: Consumer and community involvement (CCI) encompasses the range of consumer engagement activities across the research cycle. Research advisory groups (RAGs) are a common method of CCI that may empower the consumer voice in research. However, there is limited evaluation of RAGs to guide occupational therapists considering this as a CCI strategy in research. The aim of this study was to explore the processes and outcomes of a RAG partnership for an eDelphi study. METHODS: Rapid ethnography enabled a rich, thick description of the RAG through triangulation of field notes, a monthly research team log, focus groups, and an individual interview. Data were analysed using reflexive thematic analysis. Recruitment targeted consumers, health service staff, and academics with experience in CCI to enhance the diversity of perspectives guiding the eDelphi study. The RAG met four times over 4 months. FINDINGS: Seven diverse RAG members were recruited resulting in a RAG of 12 members, including the research team that included two consumers. Reflexive thematic analysis resulted in an overarching theme: Different in so many ways, which reinforced that authentic CCI in research continues to be rare even for stakeholders with experience in CCI. There were four subthemes: Set up for success, Authentic and capable facilitation, Structures and strategies for genuine partnerships, and A ripple effect of benefits. Findings added to the limited research regarding RAGs and highlighted that a short-term RAG with 12 diverse stakeholders was an effective strategy to foster mutually beneficial and meaningful collaboration. Partnering with two consumer co-researchers in RAG planning, implementation, and evaluation was central to success. CONCLUSION: Findings demonstrated that with careful co-planning and recruitment, capable facilitation with support of a committed research team (inclusive of consumers), and empowering meeting processes and structures, a short-term RAG resulted in many benefits to participants and enhanced research outcomes.

The impact of face-to-face mental health consumer-led teaching on occupational therapy student empathy levels: Two group comparison design.

INTRODUCTION: Australian and New Zealand accreditation standards for occupational therapy courses mandate consumer involvement in the design, delivery, and evaluation of courses. Consumer involvement in medical, dental, and nursing education has been evidenced as a factor for increasing student empathy. To date, there has been no known research on the impact of mental health consumer involvement on occupational therapy students' empathy. The aim of this study was to investigate if occupational therapy students who receive teaching from a mental health consumer demonstrate higher levels of empathy compared with students who receive teaching delivered by occupational therapy academics. METHODS: Pre-post, quasi experimental, two group comparison design was used to measure second-year student empathy pre and post a consumer-led teaching tutorial. Students (N = 217) were randomised into two groups across three university campuses: 'teaching as usual group' (control) or 'consumer-led' group (experimental group). The Jefferson Scale of Empathy was used to measure student empathy. RESULTS: N = 138 matched scales were returned. Little difference in empathy scales was detected between groups. The 'consumer-led' group increased for the empathy scale by 3.4(95% CI: 0.7,6.1, p = 0.014) but was not statistically significant compared to 1.3(95% CI: -1.0,3.5, p = 0.267) for the control group. Both groups scored highly on empathy. CONCLUSION: This study found that occupational therapy students had pre-existing high levels of empathy. The challenge for future research is to identify appropriate ways to measure the impact of mental health consumer involvement on occupational therapy curriculum and students.

Public perspectives on acquired brain injury rehabilitation and components of care: A Citizens' Jury.

BACKGROUND: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked 'What considerations are important to include in a model of care of brain injury rehabilitation?' METHODS: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days. RESULTS: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made. CONCLUSION: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term. PATIENT AND PUBLIC CONTRIBUTION: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.

Whose story is it? Mental health consumer and carer views on carer participation in research.

BACKGROUND: Mental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants. OBJECTIVE: This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers. DESIGN: A public forum (n = 14; consumer = 5, carer = 9) and a subsequent series of interviews (n = 10; consumer = 5, carer = 4, both = 1) were conducted to investigate consumer and carer views on mental health research ethics. Data collection and analysis drew strongly on methodological features of grounded theory. RESULTS: Conducting research involving carers and consumer-carer relationships raises potential concerns related to story ownership. Lived experience stories have shared and separate elements; thus, it is important to consider potential risks to the privacy of non-participants and of social harm to participants' relationships when conducting research in this space. These risks could be minimized and managed through communication between researchers and participants, and within relationships. CONCLUSIONS: When conducting research involving carers and consumer-carer relationships, researchers may need to facilitate the negotiation of information-sharing boundaries within relationships and the safe and confidential telling of shared stories.

Can patients contribute to enhancing the safety and effectiveness of test-result follow-up? Qualitative outcomes from a health consumer workshop.

BACKGROUND: Missed test-results and failure to follow-up test-results are major patient safety concerns. Strategies to improve test-results management have predominantly focused on clinician-based interventions, with patients principally involved in studies of test-result communication preferences, the impact of patient portals or experiences with reporting processes in primary care. OBJECTIVE: To identify consumer perspectives and experiences of the challenges they have faced with test-results management, through consumer participation in qualitative data analysis. DESIGN AND PARTICIPANTS: Volunteers (n = 10) were recruited to participate in a health consumer reference group workshop on test-results management. Prior to the workshop, consumers selected topics for discussion using a preference poll. During the workshop, consumers participated in qualitative data analysis of de-identified excerpts of previously collected interview data discussing hospital test-results management. Researchers (n = 5) guided consumers through the analytical process and discussion of themes. Discussions were audio-recorded and transcribed for qualitative analysis. RESULTS: Consumer-selected topics for discussion were 'Transitions of Care' and 'Access'. Consumer data analysis prompted broader discussion including lived experiences. Following the workshop, a second level of content analysis pinpointed issues with implications for patient safety highlighting that consumers were astutely aware of macrolevel 'Systems Factors' relating to 'Emergency Departments' and the health system, as well as microlevel 'Patient Factors' (eg patient preferences and circumstances) which impact a patient's understanding during the 'Communication' (clinician to patient/between clinicians) of test-results 'Information' (or lack thereof). CONCLUSIONS: Consumers identified the challenges patients experience with test-results management, and our findings highlight areas for potential improvement in patient safety. PATIENT OR PUBLIC CONTRIBUTION: Ten health consumer volunteers actively participated in the test-results management data analysis workshop conducted in this study. Two health consumers also volunteered to read and comment on the draft manuscript.

Patient partners' perspectives of meaningful engagement in synthesis reviews: A patient-oriented rapid review.

BACKGROUND: A growing literature describes promising practices for patient-oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective. DESIGN: The review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews. RESULTS: The literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient-related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour. CONCLUSION: Fostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits. PATIENT INVOLVEMENT: Patient partners were equal collaborators in all aspects of the review.

Exploring the role of social support and social media for lifestyle interventions to prevent weight gain with young adults: Focus group findings.

BACKGROUND: Young adults gain more weight annually than other adults and may be destined for future obesity. Effective interventions are needed, and social support may be a key element for success. The present study explores how best to leverage social media to support young adults with their health goals in a healthy lifestyle programme. METHOD: Young adults aged 18-25 years were recruited from the community to a series of four focus groups led by an experienced facilitator who used a discussion guide developed a priori. The discussion explored their opinions regarding which social media platforms were appropriate for providing social support, the types of support that were relevant (family and friends versus strangers) and factors that would encourage peer-to-peer communication in a healthy lifestyle intervention. Sessions were audio-taped, transcribed and analysed using the qualitative software, nvivo, version 11 (QSR International Pty Ltd., Melbourne, VIC, Australia). Themes were generated using an inductive approach informed by the Theory of Social Identity and Social Influence Model of Consumer Participation. RESULTS: Thirty-three people (12 male) participated. Facebook was the most popular platform for facilitating social support as a result of its private group capabilities and already being embedded into their daily routines. The preference was to be grouped with strangers who shared similar goals in smaller groups of participants. The discussions highlighted the integral role of a credible and relatable health coach to serve as a mentor, mediator and role model. CONCLUSIONS: The learnings from this research will be applied to optimise engagement within social media support groups in lifestyle interventions.

Comparing Perceptions of Patient Nonparticipation in Nursing Care: A Secondary Analysis.

PURPOSE: Patient participation is characterized by dyadic patient-nurse interactions that enable patients to passively or actively participate in communicative and physical care activities. Less research has been conducted on nonparticipation. Examining this phenomenon may highlight issues to address and identify strategies that may ultimately promote patient participation and move the rhetoric of patient participation to a reality. The aim of this secondary analysis was to explore hospital patients' and nurses' perceptions of nonparticipation in nursing care specifically focused on communication and self-care. DESIGN: Secondary supplementary analysis of qualitative data. We collated original transcripts from one dataset that included 20 patient and 20 nurse interviews conducted at two hospitals in Australia, in November 2013 to March 2014. METHODS: Interviews were arranged into units of analysis dependent on group (patient/nurse) and setting (public/private hospital) and were reanalyzed using manifest, inductive content analysis. FINDINGS: Two categories were found: (a) nurses impeding two-way clinical communication; and (b) patients and nurses disregarding patients' self-care efforts. These categories describe that nonparticipation occurred when nurses inhibited communication, and when patients were not involved in self-care while hospitalized or during discharge planning. CONCLUSIONS: Perceptions of nonparticipation differ across settings, having implications for how patient participation recommendations are enacted in different contexts. CLINICAL RELEVANCE: There is no one-size-fits-all approach; nurses need to identify common instances of nonparticipation within their setting and develop and implement strategies to promote patient participation that are suited to their context.

The impact of workplace culture on the accountability of mental health nurses to involve consumers in care planning: A focused ethnography.

Recovery-oriented mental health practice guidelines recommend regular consumer involvement in care plans, yet in many acute settings, these are not routinely created thereby compromising accountability. This study explored the impact of workplace culture on the capacity of mental health nurses to involve consumers in care planning and consequently to work accountably. A focused ethnography was undertaken in one Australian inpatient unit involving mental health nurses and other health professionals. Data were derived from in-depth semistructured interviews with 12 nurses and 6 months of nonparticipant observation of multidisciplinary meetings and clinical handovers. Workplace culture had an impact on mental health nurses' accountability practices. A culture that prioritized reduction in length of stay resulted in less recovery-oriented care. Health professionals who paid more attention to crisis and risk management resulted in fewer opportunities for consumer-involved care planning.

Consumer engagement in occupational therapy health-related research: A scoping review of the Australian Occupational Therapy Journal and a call to action.

INTRODUCTION: Consumer engagement in research is becoming an ethical, political, and moral imperative. The aim of this scoping review was to provide a snapshot of the current status of the emerging area of consumer engagement in occupational therapy health-related research, as published in the Australian Occupational Therapy Journal. METHODS: A scoping review was conducted of all health-related original research published in the Australian Occupational Therapy Journal for 5½ years, plus Early View, as at June 2019. Eligible papers were examined for consumer engagement content which included any active choice or control by consumers, beyond being a research participant. A recognised six stage methodology was used with quantitative and qualitative data analysed. Two consumers collaborated in interpreting the data including finalising themes, leading theme naming, developing key discussion points, and producing recommendations. RESULTS: Of the 123 eligible papers, 48 (39.02%) included consumer engagement. However, only two incorporated consumer engagement across all research phases-preparation, execution and translation. A total of 103 consumer engagement activities were charted and categorised across all papers. There were limited instances of consumer collaboration (14/103, 13.59%) or consumer-led research processes (15/103, 14.56%) reported. Four themes emerged: Parity in research partnerships; It's important to know the Who, What, When, How and So What of consumer involvement; Consumer engagement must be a two-way process-not a dead end street; and Meeting the challenge-being diverse and inclusive. CONCLUSION: Comprehensive consumer-researcher partnerships may not be common-place in health-related occupational therapy research in the Australian Occupational Therapy Journal. This paper is a call to action. Occupational therapists must embrace consumer research partnerships as a demonstration of the key philosophies of enabling and empowering consumers and communities. Collaboration with two consumers in finalising data analysis, results interpretation and reporting added a diverse and valuable perspective.

Hospital patients' perspectives on what is essential to enable optimal palliative care: A qualitative study.

BACKGROUND: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. AIM: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. DESIGN: An exploratory qualitative study using semi-structured interviews. SETTING/PARTICIPANTS: Participants were recruited through five hospitals in New South Wales, Australia. RESULTS: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. CONCLUSIONS: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

Top 10 research priorities for human milk banking and use of donor human milk: A partnership between parents and clinicians.

AIM: This study sought to establish research priorities in human milk banking and use of pasteurised donor human milk. It aimed to (i) collaborate with national stakeholders, including parents of preterm infants, human milk donors and health-care professionals, to identify evidence uncertainties and (ii) agree by consensus on a consolidated prioritised list of research questions. METHODS: A consensus approach modelled on the James Lind Alliance was used. A steering group was formed, and key stakeholder organisations identified. Evidence uncertainties were gathered through an online survey and literature search. An iterative process was used to consolidate and rank questions. A final workshop was held to identify the top 10 research priorities. RESULTS: A total of 391 evidence uncertainties were gathered from 202 respondents (38% parents of preterm infants/milk donors, 50% health-care professionals, 12% who identified as both a parent of preterm and health professional) and a further 15 were identified from literature. The steering group consolidated these to 39 evidence uncertainties, which were ranked via another survey. The top 24 questions were workshopped by 13 participants (four parents and nine clinicians) to determine the top 10 research priorities. These included the risks and benefits of using donor milk, optimum techniques for processing and the effects of these on the properties of milk, the nutrient profile of the milk and clinical criteria for prioritising receipt of milk. CONCLUSION: The top 10 research priorities in human milk banking and use of donor milk were identified and can be used to guide researchers.

Nurses' articulations of the patients' role when the vision is partnership: A qualitative study.

Although principles such as 'patient participation' and 'patient involvement' have become ideals in health-care, they have proven to be difficult to apply in practice. In 2014, one Danish region issued an official document that included the vision of 'the patient as partner'. However, little is known about how such a vision affects clinical practice. The purpose of this study was to investigate nurses' views on how partnerships between them and patients are established considering this vision. We conducted semi-structured interviews with eight nurses working in Danish hospitals. Then, we analysed the interviews in a Norman Fairclough-inspired critical discourse analysis. During this three-dimensional analysis, we identified three discourses. We found that a liberalistic discourse wins hegemony based on the nurses' expectations of the patient's role. Nurses construct a picture of the patient's role, expecting the patient to be responsible and to participate. For the partnership to arise as envisioned, the patient is perceived as being dependent on the nurse's professional knowledge. Surprisingly, the nurses' articulations of the patient's role were identical to the vision's elements. Therefore, we suggest that the vision reflects prevailing societal norms for individuals, thereby reflecting society's attitude towards people's responsibility for their own lives.

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

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