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Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study
Background: There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. Objective: To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Design: Qualitative interview study. Setting and participants: Thirty-eight PPI contributors involved in health research across the UK. Results: Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the ‘expert in lived experience’, the ‘creative outsider’, the ‘free challenger’, the ‘bridger’, the ‘motivator’ and the ‘passive presence’. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. Conclusions: While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors’ potential impact and their motivation to stay involved.
The power of symbolic capital in patient and public involvement in health research
Background: Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective: To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods: Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings: Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Discussion and conclusions: Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power.
Cognitive and behavioural strategies for self-directed weight loss: systematic review of qualitative studies
Aim: We conducted a systematic review of qualitative studies to examine the strategies people employ as part of self-directed weight loss attempts, map these to an existing behaviour change taxonomy and explore attitudes and beliefs surrounding these strategies. Methods: Seven electronic databases were searched in December 2015 for qualitative studies in overweight and obese adults attempting to lose weight through behaviour change. We were interested in strategies used by participants in self-directed efforts to lose weight. Two reviewers extracted data from included studies. Thematic and narrative synthesis techniques were used. Results: Thirty one studies, representing over 1,000 participants, were included. Quality of the included studies was mixed. The most commonly covered types of strategies were restrictions, self-monitoring, scheduling, professional support and weight management aids. With the exception of scheduling, for which participant experiences were predominantly positive, participants' attitudes and beliefs surrounding implementation of these groups of strategies were mixed. Two new groups of strategies were added to the existing taxonomy: reframing and self-experimentation. Conclusions: This review demonstrates that at present, interventions targeting individuals engaged in self-management of weight do not necessarily reflect lived experiences of self-directed weight loss.
Interviewing children with acquired brain injury (ABI)
Research into the lives of children with acquired brain injury (ABI) often neglects to incorporate children as participants, preferring to obtain the opinions of the adult carer (e.g. McKinlay et al., 2002). There has been a concerted attempt to move away from this position by those working in children's research with current etiquette highlighting the inclusion of children and the use of a child-friendly methodology (Chappell, 2000). Children with disabilities can represent a challenge to the qualitative researcher due to the combination of maintaining the child's attention and the demands placed on them by their disability. The focus of this article is to discuss possible impediments to Interviewing children with acquired brain injury (ABI) and provide an insight into how the qualitative researcher may address these. © The Author(s), 2009.
From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research
The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation. These conceptual themes are: the language of ‘donation’; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient-reported outcome measures, record-linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a ‘sociology of research contributions’ might better capture this complexity.
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.
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.
'To be accepted as normal': Public understanding and misconceptions concerning survivors of brain injury
Primary objective: To determine the views held by the general public in Northern Ireland towards survivors of brain injury. Research design: Qualitative semi-structured interviews. Methods and procedures: Interviews were conducted with 16 members of the general public. Ten questions addressed issues such as the role of survivors of brain injury in society, the challenges they face and the characteristics ascribed to them. Main outcomes and results: When asked to describe someone with a brain injury participants typically used negative labels and identified the most common problems as relating to physical, cognitive, emotional and social functioning. There was a general failure to recognize that brain injury was a 'hidden' disability, with most participants expecting some outward manifestation. Relatively few previous studies have employed a qualitative approach to explore how the public perceives survivors of brain injury. Conclusion: Members of the public have an increasing awareness of the challenges faced by survivors of brain injury. However, in spite of this, perceptions of aggressiveness, dependency and unhappiness were still evident, suggesting potential problems in reintegrating survivors of brain injury with their communities. © 2010 Informa UK Ltd All rights reserved.
Biosamples as gifts? How participants in biobanking projects talk about donation
BACKGROUND: In the UK, altruism has featured explicitly as an underpinning principle for biobanking. However, conceptualizing donation as altruistic downplays the role of reciprocity and personal or family benefit.
GPs' adherence to guidelines for structured assessments of stroke survivors in the community and care homes
Background. Clinical practice guidelines recommend that stroke survivors' needs be assessed at regular intervals after stroke. The extent to which GPs comply with national guidance particularly for patients in care homes who have greatest clinical complexity is unknown. Objectives. This study aimed to establish the current clinical practice in the UK of needs assessment by GPs for stroke survivors after hospital discharge for acute stroke. Methods. Cross-sectional online survey of current practice of GPs, using the national doctors.net network. Results. The survey was completed by 300 GPs who had on average been working for 14 years. The structured assessment of stroke survivors' needs was not offered by 31% of GPs, with no significant difference for level of provision in community or care home settings. The outputs of reviews were added to patients' notes by 89% of GPs and used to change management by 57%. Only half the GPs reported integrating the information obtained into care plans and only a quarter of GPs had a protocol for follow-up of identified needs. Analysis of free-text comments indicated that patients in some care homes may receive more regular and structured reviews. Conclusions. This survey suggests that at least one-third of GPs provide no formal review of the needs of stroke patients and that in only a minority are identified needs addressed in a structured way. Standardization is required for what is included in reviews and how needs are being identified and met.
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.
Email consultations between patients and doctors in primary care: content analysis
Background: Increasingly, consultations in health care settings are conducted remotely using a range of communication technologies. Email allows for 2-way text-based communication, occurring asynchronously. Studies have explored the content and nature of email consultations to understand the use, structure, and function of email consultations. Most previous content analyses of email consultations in primary care settings have been conducted in North America, and these have shown that concerns and assumptions about how email consultations work have not been realized. There has not been a UK-based content analysis of email consultations. Objective: This study aims to explore and delineate the content of consultations conducted via email in English general practice by conducting a content analysis of email consultations between general practitioners (GPs) and patients. Methods: We conducted a content analysis of anonymized email consultations between GPs and patients in 2 general practices in the United Kingdom. We examined the descriptive elements of the correspondence to ascertain when the emails were sent, the number of emails in an email consultation, and the nature of the content. We used a normative approach to analyze the content of the email consultations to explore the use and function of email consultation. Results: We obtained 100 email consultations from 85 patients, which totaled 262 individual emails. Most email users were older than 40 years, and over half of the users were male. The email consultations were mostly short and completed in a few days. Emails were mostly sent and received during the day. The emails were mostly clinical in content rather than administrative and covered a wide range of clinical presentations. There were 3 key themes to the use and function of the email consultations: the role of the GP and email consultation, the transactional nature of an email consultation, and the operationalization of an email consultation. Conclusions: Most cases where emails are used to have a consultation with a patient in general practice have a shorter consultation, are clinical in nature, and are resolved quickly. GPs approach email consultations using key elements similar to that of the face-to-face consultation; however, using email consultations has the potential to alter the role of the GP, leading them to engage in more administrative tasks than usual. Email consultations were not a replacement for face-to-face consultations.
'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.
Supporting social prescribing in primary care by linking people to local assets: A realist review
Background: Social prescribing is a way of addressing the 'non-medical' needs (e.g. loneliness, debt, housing problems) that can affect people's health and well-being. Connector schemes (e.g. delivered by care navigators or link workers) have become a key component to social prescribing's delivery. Those in this role support patients by either (a) signposting them to relevant local assets (e.g. groups, organisations, charities, activities, events) or (b) taking time to assist them in identifying and prioritising their 'non-medical' needs and connecting them to relevant local assets. To understand how such connector schemes work, for whom, why and in what circumstances, we conducted a realist review. Method: A search of electronic databases was supplemented with Google alerts and reference checking to locate grey literature. In addition, we sent a Freedom of Information request to all Clinical Commissioning Groups in England to identify any further evaluations of social prescribing connector schemes. Included studies were from the UK and focused on connector schemes for adult patients (18+ years) related to primary care. Results: Our searches resulted in 118 included documents, from which data were extracted to produce context-mechanism-outcome configurations (CMOCs). These CMOCs underpinned our emerging programme theory that centred on the essential role of 'buy-in' and connections. This was refined further by turning to existing theories on (a) social capital and (b) patient activation. Conclusion: Our realist review highlights how connector roles, especially link workers, represent a vehicle for accruing social capital (e.g. trust, sense of belonging, practical support). We propose that this then gives patients the confidence, motivation, connections, knowledge and skills to manage their own well-being, thereby reducing their reliance on GPs. We also emphasise within the programme theory situations that could result in unintended consequences (e.g. increased demand on GPs).
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.