An overview of childhood cancer care and outcomes in Egypt: a narrative review.

Childhood cancer is an urgent priority in Egypt, owing to a large number of children with cancer, the great need and demand for paediatric oncology services, limited resources/funds and inferior survival outcomes. Therefore, an overview of the status of childhood cancer care in Egypt and an evidence-based approach towards optimal utilisation of resources/funds to improve this care are needed. This paper summarises key evidence about childhood cancer care and outcomes in Egypt. We conducted a narrative literature review using a structured search strategy of the MEDLINE database through the PubMed interface. All relevant evidence was summarised under five main sub-topics: (1) burden of childhood cancer in Egypt; (2) treatment approaches; (3) health outcomes; (4) costs and cost-effectiveness of treatment; and (5) barriers and facilitators to optimal childhood cancer care. We found high estimates of disease burden of childhood cancer in Egypt. Furthermore, childhood cancer treatment in Egypt is based on either implementing intensity-regulated protocols or adopting international protocols with or without adaptations to local contexts, leading to varying standards of care among the different treating centres. Limited data about the survival outcomes, costs and cost-effectiveness of treatment exist, although high-quality data from retrospective cohort studies were published from a large paediatric oncology centre (Children's Cancer Hospital Egypt-57357). As Egypt joins the WHO Global Initiative for Childhood Cancers as a focus country, it is prepared to move towards streamlining national efforts to implement a national childhood cancer plan to advance care, improve health outcomes and optimise resource use. Through these efforts, Egypt could become a beacon of hope and a role model to other low- and middle-income countries seeking to improve their childhood cancer care.

Framework for understanding movement and physical activity in patients diagnosed with psychosis.

BACKGROUND: Patients diagnosed with psychosis often spend less time than others engaged in exercise and more time sitting down, which likely contributes to poorer physical and mental health. OBJECTIVE: The aim of this study was to develop a comprehensive framework from the perspective of patients, carers, and staff for understanding what promotes movement and physical activity. METHODS: A critical realist approach was taken to design the study. Interviews (n=23) and focus groups (n=12) were conducted with (1) outpatients aged 16 years or older diagnosed with psychosis, and under the care of a mental health team, (2) carers and (3) mental health staff working in the community. Purposive sampling was used to maximise variation in participant characteristics. Data were analysed using reflexive thematic analysis. FINDINGS: 19 patients (9 women and 10 men, mean age=45·0 (SD=12·2) years, 15 White British, 2 Black African, 1 Pakistani and 1 other ethnic group), 14 carers (11 women and 3 men, mean age=59·9 (SD=12·7) years, 13 White British and 1 Asian) and 18 staff (14 women and 4 men, mean age=38·7 (SD=12·3) years, 15 White British, 1 White other, 1 Asian Bangladeshi and 1 other Asian) participated in the study. Five factors were found to promote movement and physical activity. Patients must be able to find a purpose to moving which is meaningful to them (Factor 1: Purpose). Patients need to have an expectation of the positive consequences of movement and physical activity, which can be influenced by others' expectations (Factor 2: Predictions). A patient's current physical (eg, pain) and emotional state (eg, distress about voices) needs to be addressed to allow movement and physical activity (Factor 3: Present state). Movement and physical activity can also be encouraged by the availability of effective and tailored support, provided by engaged and supported people (Factor 4: Provision). Finally, through the identification and interruption of vicious cycles (eg, between inactivity and mood states) more positive cycles can be put in place (Factor 5: Process). CONCLUSIONS AND CLINICAL IMPLICATIONS: The 5 P (Purpose, Predictions, Present state, Provision and Process Physical Activity Framework) for understanding movement and physical activity for people diagnosed with psychosis has the potential to inform future research and guide interventions. A checklist is provided for clinicians to help foster change in activity levels.

Defining success in adult obesity management: A systematic review and framework synthesis of clinical practice guidelines.

Obesity is a chronic and complex disease affecting millions of people worldwide. Currently, there is no standard definition of success for the management of obesity. We set out to complete a synthesis of clinical practice guidelines for obesity management for adult populations, aiming to provide both a quantitative descriptive and qualitative analysis of definitions of success in clinical practice guidelines. An electronic search retrieved 4477 references. Sixteen clinical practice guidelines were included after screening and full-text review. We coded definitions of success 147 times across the included guidelines. No standard or explicit definition of success was identified in the guidelines but rather success was implicitly defined. We developed three themes describing how success was defined in the clinical practice guidelines: Knowledge-based decision making; management of expectations; and the perception of control. The review reinforced that success is an inherently subjective and complex concept. Defining success is limited by existing studies that focus on weight loss and would benefit from additional research on different outcomes. Equally, the relationship between people living with obesity and their clinicians should be further explored to understand how defining success is controlled, discussed and framed in a clinical setting.

'You feel like you've been duped': is the current system for health professionals declaring potential conflicts of interest in the UK fit for purpose? A mixed methods study.

OBJECTIVE: To understand: if professionals, citizens and patients can locate UK healthcare professionals' statements of declarations of interests, and what citizens understand by these. DESIGN: The study sample included two groups of participants in three phases. First, healthcare professionals working in the public domain (health professional participants, HPP) were invited to participate. Their conflicts and declarations of interest were searched for in publicly available data, which the HPP checked and confirmed as the 'gold standard'. In the second phase, laypeople, other healthcare professionals and healthcare students were invited to complete three online tasks. The first task was a questionnaire about their own demographics. The second task was questions about doctors' conflicts of interest in clinical vignette scenarios. The third task was a request for each participant to locate and describe the declarations of interest of one of the named healthcare professionals identified in the first phase, randomly assigned. At the end of this task, all lay participants were asked to indicate willingness to be interviewed at a later date. In the third phase, each lay respondent who was willing to be contacted was invited to a qualitative interview to obtain their views on the conflicts and declaration of interest they found and their meaning. SETTING: Online, based in the UK. PARTICIPANTS: 13 public-facing health professionals, 379 participants (healthcare professionals, students and laypeople), 21 lay interviewees. OUTCOME MEASURES: (1) Participants' level of trust in professionals with variable conflicts of interest, as expressed in vignettes, (2) participants' ability to locate the declarations of interest of a given well-known healthcare professional and (3) laypeoples' understanding of healthcare professionals declarations and conflicts of interest. RESULTS: In the first phase, 13 health professionals (HPP) participated and agreed on a 'gold standard' of their declarations. In the second phase, 379 citizens, patients, other healthcare professionals and students participated. Not all completed all aspects of the research. 85% of participants thought that knowing about professional declarations was definitely or probably important, but 76.8% were not confident they had found all relevant information after searching. As conflicts of interest increased in the vignettes, participants trusted doctors less. Least trust was associated with doctors who had not disclosed their conflicts of interest. 297 participants agreed to search for the HPP 'gold standard' declaration of interest, and 169 reported some data. Of those reporting any findings, 61 (36%) located a relevant link to some information deemed fit for purpose, and 5 (3%) participants found all the information contained in the 'gold standard'. In the third phase, qualitative interviews with 21 participants highlighted the importance of transparency but raised serious concerns about how useful declarations were in their current format, and whether they could improve patient care. Unintended consequences, such as the burden for patients and professionals to use declarations were identified, with participants additionally expressing concerns about professional bias and a lack of insight over conflicts. Suggestions for improvements included better regulation and organisation, but also second opinions and independent advice where conflicts of interest were suspected. CONCLUSION: Declarations of interest are important and conflicts of interest concern patients and professionals, particularly in regard to trust in decision-making. If declarations, as currently made, are intended to improve transparency, they do not achieve this, due to difficulties in locating and interpreting them. Unintended consequences may arise if transparency alone is assumed to provide management of conflicts. Increased trust resulting from transparency may be misplaced, given the evidence on the hazards associated with conflicts of interest. Clarity about the purposes of transparency is required. Future policies may be more successful if focused on reducing the potential for negative impacts of conflicts of interest, rather than relying on individuals to locate declarations and interpret them. TRIAL REGISTRATION NUMBER: The protocol was pre-registered at https://osf.io/e7gtq.

Barriers and Facilitators to Implementing Cost-Effective Evidence-Based Childhood Cancer Treatment in a Resource-Limited Setting in Egypt: A Qualitative Interview Study.

PURPOSE: Childhood cancer treatment is complex, resource-intensive, and expensive, and resource-limited settings would benefit from providing cost-effective treatment approaches on the basis of evidence. Effective implementation of cost-effective evidence-based treatment requires knowledge about factors influencing its use. In this study, we determined the clinicians' perceptions of the barriers and facilitators to implementing cost-effective evidence-based treatment for children with cancer in a resource-limited pediatric oncology setting in Egypt. METHODS: We conducted a qualitative study on the basis of semistructured interviews with senior clinicians who make high-level decisions on treatment protocols and tailored decisions for the atypically complicated group of patients. Purposive sampling was used to recruit the participants. Thematic analysis was conducted semantically to develop themes of barriers and facilitators. RESULTS: Fourteen participants agreed to participate in the study: nine pediatric oncologists; three surgeons; and two radiation oncologists. We identified four main themes of barriers and facilitators: awareness and orientation; knowledge, skills, and attitudes; system, resources, and context; and clinical practice. The main barriers included absence of easily available costs/cost-effectiveness data, limited resources and inability to pay for expensive novel (cost-effective) drugs, and gap between evidence and practice. The main facilitators included adopting standard treatment protocols on the basis of clinical effectiveness, leadership support, availability of patients' clinical and cost data from local context, and existing knowledge and skills in clinical research and health economic evaluation. The interview participants also provided suggestions to promote the implementation of cost-effective evidence-based treatment in priority areas. CONCLUSION: Our study findings provide an understanding of the barriers and facilitators affecting the implementation of cost-effective evidence-based treatment for childhood cancers in Egypt. We provide practical recommendations to address the implementation gaps with implications on practice, policy, and research.

Integrating patient values and preferences in healthcare: a systematic review of qualitative evidence.

OBJECTIVES: To identify and thematically analyse how healthcare professionals (HCPs) integrate patient values and preferences ('values integration') in primary care for adults with non-communicable diseases (NCDs). DESIGN: Systematic review and meta-aggregation methods were used for extraction, synthesis and analysis of qualitative evidence. DATA SOURCES: Relevant records were sourced using keywords to search 12 databases (ASSIA, CINAHL, DARE, EMBASE, ERIC, Google Scholar, GreyLit, Ovid-MEDLINE, PsycINFO, PubMed-MEDLINE, Scopus and Web of Science). ELIGIBILITY CRITERIA: Records needed to be published between 2000 and 2020 and report qualitative methods and findings in English involving HCP participants regarding primary care for adult patients. DATA EXTRACTION AND SYNTHESIS: Relevant data including participant quotations, authors' observations, interpretations and conclusions were extracted, synthesised and analysed in a phased approach using a modified version of the Joanna Briggs Institute (JBI) Data Extraction Tool, as well as EPPI Reviewer and NVivo software. The JBI Critical Appraisal Checklist for Qualitative Research was used to assess methodological quality of included records. RESULTS: Thirty-one records involving >1032 HCP participants and 1823 HCP-patient encounters were reviewed. Findings included 143 approaches to values integration in clinical care, thematically analysed and synthesised into four themes: (1) approaches of concern; (2) approaches of competence; (3) approaches of communication and (4) approaches of congruence. Confidence in the quality of included records was deemed high. CONCLUSIONS: HCPs incorporate patient values and preferences in healthcare through a variety of approaches including showing concern for the patient as a person, demonstrating competence at managing diseases, communicating with patients as partners and tailoring, adjusting and balancing overall care. Themes in this review provide a novel framework for understanding and addressing values integration in clinical care and provide useful insights for policymakers, educators and practitioners. PROSPERO REGISTRATION NUMBER: CRD42020166002.

Enhancing opportunistic recruitment and retention in primary care trials: lessons learned from a qualitative study embedded in the Cranberry for Urinary Tract Infection (CUTI) feasibility trial.

BACKGROUND: Opportunistic recruitment in primary care is challenging due to the inherent unpredictability of incident conditions, and workload and time pressures. Many clinical trials do not recruit to target, leading to equivocal answers to research questions. Learning from the experiences of patients and recruiters to trials of incident conditions has the potential to improve recruitment and retention to future trials, thereby enhancing the quality and impact of research findings. The aim of this research was to learn from the trial experiences of UTI patients and recruiters to the Cranberry for UTI (CUTI) trial, to help plan an adequately powered trial of similar design. METHODS: One-to-one semi-structured interviews were embedded within the CUTI feasibility trial, an open-label, randomised feasibility trial of cranberry extract for symptoms of acute, uncomplicated Urinary Tract Infection (UTI) in primary care. Interviews were conducted with a sample of: CUTI trial participants; non-CUTI trial UTI patients; and, recruiters to the CUTI trial. Verbatim transcripts were analysed thematically. RESULTS: Twenty-six patients with UTI and eight recruiters (nurses and GPs) to the CUTI trial were interviewed. Three themes were developed around: reasons for participating in research; barriers to opportunistic recruitment; and, UTI patients' experiences of trial procedures. Recruiters found that targeted electronic prompts directed at healthcare practitioners based in clinics where patients with incident conditions were likely to present (e.g. minor illness clinic) were more effective than generic prompts (e.g. desk prompts) at filtering patients from their usual clinical pathway to research clinics. Using a script to explain the delayed antibiotic trial group to patients was found to be helpful, and may have served to boost recruitment. For UTI patients, using an electronic diary to rate their symptoms was considered an acceptable medium, and often preferable to using a paper diary or mobile phone application. CONCLUSIONS: The use of targeted prompts directed at clinicians, a script to explain trial groups that may be deemed less desirable, and an appropriate diary format for patient-reported outcomes, may help to improve trial recruitment and retention.

Perspectives and Views of Primary Care Professionals Regarding DiabeText, a New mHealth Intervention to Support Adherence to Antidiabetic Medication in Spain: A Qualitative Study.

BACKGROUND: Antidiabetic medication is effective in preventing diabetes-related complications. However, 40% of type 2 diabetic patients do not adhere to their medication regimes adequately. Brief text messages represent a promising approach to support medication adherence. The aim of this study was to explore the perspectives of primary care professionals (PCPs) concerning the DiabeText intervention, a new text messaging intervention to be developed to support medication adherence in people with type 2 diabetes (T2D) in Mallorca, Spain. METHODS: We conducted four focus groups (n = 28) and eight semi-structured interviews with doctors and nurses. Data collection and analysis were carried out by researchers independently following Braun and Clark's methodology. RESULTS: Three main themes were identified: (1) text messaging interventions have the potential to effectively support diabetes self-management; (2) involving PCPs in the intervention would facilitate its design and implementation; (3) obtaining evidence supporting the cost-effectiveness is a key prerequisite for large-scale implementation of the intervention. PCPs identified barriers and enablers of the design and implementation of the intervention and made suggestions about the content and format of the text messages. CONCLUSION: The DiabeText intervention is perceived as useful and acceptable by PCPs provided its cost-effectiveness.

Non-antibiotic treatment of acute urinary tract infection in primary care: a qualitative study.

BACKGROUND: The views of women with acute, uncomplicated urinary tract infection (auUTI) on the acceptability of non-antibiotic treatment options are poorly understood. AIM: To establish women's thoughts on and experience of non-antibiotic treatment for auUTIs. DESIGN AND SETTING: Qualitative interview study with primary care patients in Oxfordshire, UK, embedded within the Cranberry for Urinary Tract Infection (CUTI) feasibility trial. METHOD: One-to-one, semi-structured interviews were conducted between August 2019 and January 2020 with some CUTI trial participants and some patients who were not part of the CUTI trial who had experienced at least one urinary tract infection (UTI) in the preceding 12 months in Oxfordshire, UK. Interviews were analysed using thematic analysis. RESULTS: In total, 26 interviews were conducted and analysed. Women expected to receive an immediate antibiotic for their UTI but were aware of the potential harms of this approach. They were keen to find a non-antibiotic, 'natural' alternative that could effectively manage their symptoms. In certain situations (early illness, milder illness, and with no important upcoming engagements), women indicated they would be prepared to postpone antibiotic treatment by up to 3 days, especially if offered an interim non-antibiotic option with perceived therapeutic potential. CONCLUSION: Many women with auUTIs are open to trying non-antibiotic treatments first in certain situations. There is scope for more dialogue between primary care clinicians and patients with auUTI around delaying antibiotic treatment and using non-antibiotic options initially, which could reduce antibiotic consumption for this common infection.

Patients' Views on the Design of DiabeText, a New mHealth Intervention to Improve Adherence to Oral Antidiabetes Medication in Spain: A Qualitative Study.

BACKGROUND: Type 2 Diabetes Mellitus (T2DM) is a long-term condition affecting around 10% of people worldwide. This study aimed to explore T2DM patients' views on DiabeText, a new text messaging intervention to be developed to support adherence to diabetes medication. METHODS: A total of four focus groups were conducted with a purposive sample of people with T2DM (n = 34). The data were analysed by multiple researchers independently, and coded using thematic analysis. RESULTS: There were two main themes that emerged: (1) "patients' perspectives on unmet needs for diabetes self-management", and (2) "acceptability and perceived utility of DiabeText". The patients identified a number of barriers for diabetes self-management, including lack of appropriate information and support with diet and physical activity. Support for medication-taking was not perceived as urgently needed, although several barriers were identified (eating outside, traveling, polymedication, dispensation at the pharmacy). The participants anticipated that the proposed intervention would present high levels of patient acceptability and perceived utility as long as its content addresses the barriers that were identified, and includes specific features (short and clear messages, and personalized information). CONCLUSION: The proposed intervention has the potential to be well accepted and perceived as useful by T2DM patients who require support not only in terms of medication-taking, but more prominently of lifestyle behaviour.

Play-based groups for children with cerebral palsy and their parents: A qualitative interview study about the impact on mothers' well-being.

BACKGROUND: Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well-being. Health professionals supporting children with CP have been encouraged to focus on parental well-being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play-based groups for children with CP and their parents, with a focus on the groups' impact on parents' well-being. METHODS: Parents of children with CP who had attended play-based groups in the year prior were recruited for this qualitative study. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach. RESULTS: Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well-being. Four themes described mothers' experiences of the groups and the subsequent impact on their well-being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well-being. This included mothers' individual experiences of having a child with CP. CONCLUSIONS: Interventions combining practical and social support for the whole family can have a positive impact on the well-being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one-size-fits-all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.

Turning the gaze: Digital patient feedback and the silent pathology of the NHS.

Online review and rating sites, where patients can leave feedback on their experience of the health-care encounter, are becoming an increasing feature of primary care in the NHS. Previous research has analysed how digital surveillance is re-shaping the clinical gaze, as health-care professionals are subject to increased public monitoring. Here, we draw on an empirical study of 41 GP practice staff to show how the gaze is turning, not simply from the patient to the health-care provider, but additionally to the body politic of the NHS. Drawing on focus group and interview data conducted in five UK practices, we show how discourses of online reviews and ratings are producing new professional subjectivities among health-care professionals and the extent to which the gaze extends not only to individual health-care interactions but to the health-care service writ large. We identify three counter-discourses characterising the evolving ways in which online reviews and ratings are creating new subjects in primary care practices: victimhood, prosumption versus traditional values and taking control. We show how the ways in which staff speak about online feedback are patterned by the social environment in which they work and the constraints of the NHS they encounter on a day-to-day basis.

Value, challenges and practical considerations when designing, conducting and analysing a longitudinal qualitative study in family medicine.

Qualitative longitudinal design has a long tradition in a variety of social science disciplines and is increasingly used in applied healthcare research, including family medicine. While there are many definitions of longitudinal qualitative research (LQR), its most common characteristics are multiple data collection points and its focus on temporality, which prioritise the study of change and continuity. Thus, LQR can provide insights into the nature, causes and consequences of change (or its absence). In this paper, we discuss the key steps and considerations related to designing and conducting LQR in family medicine and community health. These include (1) deciding on the length of data collection and timing and number of interviews, (2) planning recruitment: attrition versus oversampling, (3) approaching data collection: asking the same or different questions, (4) planning and conducting the analysis and writing up findings, and (5) conducting ethical LQR. We also highlight what LQR can offer family medicine and community health, including (1) allowing exploration of views and experiences of a variety of participants over time; (2) following participants through important transitions; (3) studying implementation of new practices, processes or interventions; (4) exploring the importance of historical change and/or macro context on individuals' lives; and (5) developing a deeper understanding of phenomena under study. While a lot of attention has been paid to using LQR when studying patients' and/or carers' experiences, we highlight its value when studying a variety of actors relevant to family medicine, including healthcare professionals and policy makers.

Implementing advance care planning in heart failure: a qualitative study of primary healthcare professionals.

BACKGROUND: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. AIM: To explore the views of primary care HCPs on how to improve their engagement with ACP in HF. DESIGN AND SETTING: A qualitative interview study with GPs and primary care nurses in England. METHOD: Semi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis. RESULTS: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients' quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training. CONCLUSION: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.

Does cranberry extract reduce antibiotic use for symptoms of acute uncomplicated urinary tract infections (CUTI)? A feasibility randomised trial.

OBJECTIVES: To determine the feasibility of conducting a randomised trial of the effectiveness of cranberry extract in reducing antibiotic use by women with symptoms of acute, uncomplicated urinary tract infection (UTI). DESIGN: Open-label feasibility randomised parallel group trial. SETTING: Four general practices in Oxfordshire. PARTICIPANTS: Women aged 18 years and above presenting to general practice with symptoms of acute, uncomplicated UTI. INTERVENTIONS: Women were randomly assigned using Research Electronic Data Capture in a 1:1:1 ratio to: (1) immediate antibiotics alone (n=15); (2) immediate antibiotics and immediate cranberry capsules for up to 7 days (n=15); or (3) immediate cranberry capsules and delayed antibiotics for self-initiation in case of non-improvement or worsening of symptoms (n=16). PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome measures were: rate of recruitment of participants; numbers lost to follow-up; proportion of electronic diaries completed by participants; and acceptability of the intervention and study procedures to participants and recruiters. Secondary outcomes included an exploration of differences in symptom burden and antibiotic use between groups. RESULTS: Four general practitioner practices (100%) were opened and recruited participants between 1 July and 2 December 2019, with nine study participants recruited per month on average. 68.7% (46/67) of eligible participants were randomised (target 45) with a mean age of 48.4 years (SD 19.9, range 18-81). 89.1% (41/46) of diaries contained some participant entered data and 69.6% (32/46) were fully complete. Three participants (6.5%) were lost to follow-up and two (4.4%) withdrew. Of women randomly assigned to take antibiotics alone (controls), one-third of respondents reported consuming cranberry products (33.3%, 4/12). There were no serious adverse events. CONCLUSIONS: It appears feasible to conduct a randomised trial of the use of cranberry extract in the treatment of acute, uncomplicated UTI in general practice. TRIAL REGISTRATION NUMBER: ISRCTN Registry (ID: 10399299).

Broadening diversity through creative involvement to identify research priorities.

BACKGROUND: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. METHODS: We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. RESULTS: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women's health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. CONCLUSIONS: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

Understanding, treating, and renaming grandiose delusions: A qualitative study.

BACKGROUND: Grandiose delusions are arguably the most neglected psychotic experience in research. OBJECTIVES: We aimed to discover from patients: whether grandiose delusions have harmful consequences; the psychological mechanisms that maintain them; and what help patients may want from clinical services. DESIGN: A qualitative interview design was used to explore patients' experiences of grandiose delusions. METHOD: Fifteen patients with past or present experiences of grandiose delusions who were attending psychiatric services were interviewed. Thematic analysis and grounded theory were used to analyse the data. RESULTS: Participants reported physical, sexual, social, occupational, and emotional harms from grandiose delusions. All patients described the grandiose belief as highly meaningful: it provided a sense of purpose, belonging, or self-identity, or it made sense of unusual or difficult events. The meaning from the belief was not synonymous with extreme superiority or arrogance. The meaning obtained appeared to be a key driver of the persistence of the beliefs. Other maintenance factors were subjectively anomalous experiences (e.g., voices), symptoms of mania, fantasy elaboration, reasoning biases, and immersive behaviours. Participants described insufficient opportunities to talk about their grandiose beliefs and related experiences and were generally positive about the possibility of a psychological therapy. CONCLUSIONS: We conclude that grandiosity is a psychologically rich experience, with a number of maintenance factors that may be amenable to a targeted psychological intervention. Importantly, the term 'grandiose delusion' is an imprecise description of the experience; we suggest 'delusions of exceptionality' may be a credible alternative. PRACTITIONER POINTS: Harm from grandiose delusions can occur across multiple domains (including physical, sexual, social, occupational, and emotional) and practitioners should assess accordingly. However, grandiose delusions are experienced by patients as highly meaningful: they provide a sense of purpose, belonging, or self-identity, or make sense of unusual or difficult events. Possible psychological maintenance mechanisms that could be a target for intervention include the meaning of the belief, anomalous experiences, mania, fantasy elaboration, reasoning biases, and immersive behaviours. Patients are keen to have the opportunity to access talking therapies for this experience. Taking extra time to talk at times of distress, 'going the extra mile', and listening carefully can help to facilitate trust.

Lost in reviews: Looking for the involvement of stakeholders, patients, public and other non-researcher contributors in realist reviews.

The involvement of non-researcher contributors (eg, stakeholders, patients and the public, decision and policy makers, experts, lay contributors) has taken a variety of forms within evidence syntheses. Realist reviews are a form of evidence synthesis that involves non-researcher contributors yet this practice has received little attention. In particular, the role of patient and public involvement (PPI) has not been clearly documented. This review of reviews describes the ways in which contributor involvement, including PPI, is documented within healthcare realist reviews published over the last five years. A total of 448 papers published between 2014 and 2019 were screened, yielding 71 full-text papers included in this review. Statements about contributor involvement were synthesized across each review using framework analysis. Three themes are described in this article including nomenclature, nature of involvement, and reporting impact. Papers indicate that contributor involvement in realist reviews refers to stakeholders, experts, or advisory groups (ie, professionals, clinicians, or academics). Patients and the public are occasionally subsumed into these groups and in doing so, the nature and impact of their involvement become challenging to identify and at times, is lost completely. Our review findings indicate a need for the realist review community to develop guidance to support researchers in their future collaboration with contributors, including patients and the public.