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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Group-Based Interventions for Carers of People With Dementia: A Systematic Review.
Background and objectivesIt is well documented that caring for someone with dementia is associated with many negative mental health outcomes, such as depression, anxiety, and a reduction in quality of life. Group-based interventions are one strategy for improving well-being for carers, but previous systematic reviews have reported inconsistent findings about the efficacy of group-based interventions for carers of people with dementia.Research design and methodsThis systematic review investigates the qualitative and quantitative evidence for the effectiveness of group-based interventions and identifies targets for future research. Narrative synthesis was used to analyze the data.ResultsA comprehensive search of 4 databases revealed 117 potentially relevant studies, 19 of which met the full inclusion criteria. Five studies investigated group cognitive behavioral therapy, 8 investigated psycho-educational interventions, and 6 investigated support groups. The effectiveness of the interventions varied widely, even within subcategories. No type of intervention was consistently shown to improve well-being, though qualitative data and data about participant satisfaction was generally very positive.Discussion and implicationsBased on the quality and quantity of the evidence currently available, there is not enough evidence to reach firm conclusions about the impact of group-based interventions on well-being. In order to establish the effectiveness of group-based interventions there needs to be more high-quality studies with larger sample sizes about this topic. Future research may benefit from the use of mixed methods data collection to explore the disparity between qualitative and quantitative findings in the literature.
Audiovisual integration improves task performance in AD and bvFTD
AbstractBackgroundComplex analysis of sensory inputs, such as auditory scene analysis and spatial localisation, is impaired in Alzheimer’s disease (AD) and behavioural variant frontotemporal dementia (bvFTD). Multisensory integration research demonstrates that synchronous stimulation in one sense (e.g. vision) can modify processing of suboptimal sensory inputs from another sense (e.g. hearing) in the healthy brain. However, the potential benefit of multisensory stimulation to reduce common symptoms in dementia has not been fully examined.MethodPatients living with AD (n = 20) or bvFTD (n = 12), and healthy age‐matched controls (n = 18) were recruited to perform three brief cognitive tasks: 1. Cocktail party effect, identify a name spoken in a noisy environment; 2. Spatial ventriloquism, discriminate the location of an auditory stimulus (left/right of centre); and 3. Detect a suboptimal visual stimulus. Task performance was compared between unisensory, audiovisual congruent, and audiovisual incongruent conditions, and between groups.Result1. Identification of spoken names in a noisy auditory environment was significantly worse for both patient groups than controls. All groups performed significantly better when viewing an accompanying video of congruent lip movements. The AD group showed some improvement for incongruent videos that cued the onset of the spoken name. 2. Auditory spatial discrimination was significantly worse in the AD group than controls, but both groups were significantly biased by the locations of the accompanying visual stimulus. The bvFTD group was only influenced by spatially incongruent visual stimulation. 3. Detection of a near‐threshold peripheral visual stimulus was improved by a synchronous auditory stimulus, irrespective of spatial congruency, in the bvFTD and control groups. In the AD group, only spatially congruent or neutral auditory stimuli benefitted visual stimulus detection.ConclusionCongruent audiovisual stimulation improves the ability of people living with AD or bvFTD to understand voices in a noisy environment, locate auditory sounds, and detect unreliable visual events. Congruency of audiovisual stimulation in different domains (e.g. semantic, spatial) provides evidence for disease‐specific stratification of multisensory integration profiles. As such, multisensory integration provides a mechanism to improve reliability of sensory inputs and the potential to alleviate symptoms in daily life if tailored according to disease.
A mixed methods protocol for an impact and implementation evaluation of the Pharmacy First Services for management of common conditions in England
Objectives: In response to high levels of demand for primary medical services in England, characterized by longer appointment waiting times and delayed referrals, the Government developed its National Health Service (NHS) Primary Care Recovery Plan. A key component of the plan is Pharmacy First (PF), which involves participating community pharmacies supplying prescription-only medicine after consultation with a pharmacist for seven common conditions: earache, uncomplicated urinary tract infections in women, sore throat, sinusitis, impetigo, shingles, and infected insect bites. The study aims to evaluate the implementation of the PF service and its impact on the volume of prescribing, case mix of General Practitioner consultations, accident and emergency department and other hospital use, equity of access, and cost for different groups of patients in different contexts, as well as its acceptability and fidelity. Methods: A 36-month, mixed methods evaluation with five elements, namely evidence synthesis, semi-structured interviews, focus groups, quantitative analysis of impacts before and after implementation (e.g. using interrupted time series analysis) using routine data, and an economic evaluation. Findings will be synthesized and interpreted using the Consolidated Framework for Implementation Research supplemented by Proctor’s Implementation Outcomes Framework. Conclusions: The evaluation should have service level, policy, professional, and research impact both in England and beyond. This includes generating evidence to show: whether PF contributes to improving primary healthcare access, assessing the quality of antimicrobial use, identifying the scope for refinements to PF, and, overall, informing better implementation of PF. The findings will also provide robust evidence to enable policymakers to determine how to enhance the role of community pharmacy in England in the future. Furthermore, the evaluation will develop a data dashboard, and the methods and codes used to interrogate it (though not the patient data), will be made publicly available that could support other similar evaluations in England and internationally.
Erratum: Correction: Evaluation of the impact of COVID-19 pandemic on hospital admission related to common infections: Risk prediction models to tackle antimicrobial resistance in primary care (PloS one (2024) 19 12 DOI: 10.1371/journal.pone.0311515.)
[This corrects the article DOI: 10.1371/journal.pone.0311515.].
Influence of context on engagement with COVID-19 testing: a scoping review of barriers and facilitators to testing for healthcare workers, care homes and schools in the UK.
ObjectiveThe UK government's response to the COVID-19 pandemic included a 'test, trace and isolate' strategy. Testing services for healthcare workers, care homes and schools accounted for the greatest spend and volume of tests. We reviewed relevant literature to identify common and unique barriers and facilitators to engaging with each of these testing services.DesignScoping review.Search strategyPubMed, Scopus and the WHO COVID-19 Research Database were searched for evidence published between 1 January 2020 and 7 November 2022. This was supplemented by evidence identified via free-text searches on Google Scholar and provided by the UK Health Security Agency (UKHSA).Data extraction and synthesisData were extracted by a team of reviewers and synthesised thematically under the broad headings of perceptions, experiences, barriers and facilitators to engaging with the COVID-19 testing programme.ResultsThis study included 40 sources, including 17 from projects that informed UKHSA's decisions during the pandemic. Eight themes emerged and were used to categorise barriers and facilitators to engaging with the testing services for healthcare workers, care homes and schools: (1) perceived value, (2) trust in the tests and public bodies, (3) importance of infrastructure, (4) impact of media and social networks, (5) physical burden of the test, (6) perceived capability to undertake testing, (7) importance of relevant information and 8) consequences of testing.ConclusionsUniversal barriers and facilitators to engagement with the testing programme related to the core elements of each testing service, such as uncomfortable specimen collection and the influence of media and peers; these could be mitigated or leveraged to increase engagement across settings. However, the individuals involved, perceptions of value and available resources differed across services, leading to unique experiences between settings. Thus, consideration of context is crucial when designing and implementing a testing programme in response to a pandemic.
Impact of the COVID-19 pandemic on antidepressant prescribing with a focus on people with learning disability and autism: an interrupted time series analysis in England using OpenSAFELY-TPP.
BACKGROUND: COVID-19 restrictions led to increased reports of depressive symptoms in the general population and impacted health and social care services. We explored whether these changes affected antidepressant prescribing trends in the general population and those with learning disability or autism. METHODS: With the approval of NHS England, we used >24 million patients' primary care data from the OpenSAFELY-TPP platform. We used interrupted time series analysis to quantify trends in those prescribed and newly prescribed an antidepressant across key demographic and clinical subgroups, comparing pre-COVID-19 (January 2018-February 2020), COVID-19 restrictions (March 2020-February 2021) and recovery (March 2021-December 2022) periods. RESULTS: Prior to COVID-19 restrictions, antidepressant prescribing was increasing in the general population and in those with learning disability or autism. We did not find evidence that the pandemic was associated with a change in antidepressant prescribing trend in the general population (relative risk (RR) 1.00 (95% CI 0.97 to 1.02)), in those with autism (RR 0.99 (95% CI 0.97 to 1.01)) or in those with learning disability (RR 0.98 (95% CI 0.96 to 1.00)).New prescribing post restrictions was 13% and 12% below expected had COVID-19 not happened in both the general population and those with autism (RR 0.87 (95% CI 0.83 to 0.93), RR 0.88 (95% CI 0.83 to 0.92)), but not learning disability (RR 0.96 (95% CI 0.87 to 1.05)). CONCLUSIONS AND IMPLICATIONS: In this England study, we did not see an impact of COVID-19 on overall antidepressant prescribing, although unique trends were noted, such as trends in new antidepressant prescriptions which increased in care homes over the pandemic and decreased in the general population and those with autism since recovery.
Bridging the pulse: Exploring inequalities in diabetes and hypertension medication prescriptions in Spain's immigrant and native communities.
Migrants often face barriers in accessing high quality healthcare, leading to unequal treatment. This research investigates the disparities in medication utilization for cardiovascular risk factors between immigrant and native-born populations in Spain. The study specifically examines differences in drug prescriptions for managing diabetes and hypertension, two key contributors to cardiovascular disease. We analyze administrative healthcare records to examine the probability of patients receiving prescriptions for antidiabetic and antihypertensive medications. Additionally, we assess the likelihood of patients undergoing tests to measure glycated hemoglobin levels and blood pressure, two crucial indicators for monitoring diabetes and hypertension management.The analysis is stratified across different levels of medical needs, by also controlling for individual socioeconomic status, physician diagnoses, biometric data and primary care centers fixed effects. The findings reveal that all immigrant groups have lower probabilities of being prescribed medications for diabetes and hypertension and this is especially true for people with higher levels of healthcare needs. These findings underscore the importance of addressing healthcare disparities to achieve more equitable outcomes for immigrant communities.
Resilience of the acute sector in recovery from COVID-19 pressures.
The COVID-19 pandemic had a profound impact on the management and delivery of acute healthcare. To tackle the pandemic, hospitals redesigned their organisational models to provide a rapid increase in acute care assessment and treatment capacity for patients with COVID-19 whilst also trying to maintain delivery of care for patients with non-COVID-19 healthcare needs. This capacity to adjust and recover after COVID-19 might be shaped by both measures taken by acute hospitals and wider hospital pre-pandemic characteristics. The aim of this study is to examine how hospital characteristics in acute care are associated with recovery of elective activity after the height of the COVID-19 pandemic compared to pre-pandemic levels. Using patient-level data from Hospital Episode Statistics aggregated at monthly-trust level for all English National Health Service (NHS) acute hospital trusts in 2019 and 2021, we estimate the associations between hospital recovery rate and hospital pre-pandemic characteristics by employing linear regressions of the proportional change over time in elective activity against a set of explanatory variables related to supply factors (e.g., hospital size, workforce, type of hospital, regional location), demand factors (e.g., population need, patient case-mix) and time factors. On average, English NHS acute hospital trusts did not fully recover from the COVID-19 pandemic in 2021. The results show that the explanatory variables are not systematically associated with hospital recovery rate, excepting regional differences. Hospital trusts not located in London, especially in the North of England, are associated with a lower recovery (less resilience) of total elective activity and orthopaedic and vascular surgical elective activity. The implication for policy development is that the evolution of hospital recovery rates in elective activity varied across English regions, especially for high-volume and high-risk elective specialties, with better recovery in London than elsewhere.
Understanding the impact of delegated home visiting services accessed via general practice by community-dwelling patients: A realist review protocol
Introduction In western countries, early visiting services (EVS) have been proposed as a recent intervention to reduce both general practitioner workload and hospital admissions among housebound individuals experiencing a healthcare need within the community. EVS involves the delegation of the patient home visits to other staff groups such as paramedics or nursing staff. However, the principles of organising this care are unknown and it remains unclear how different contexts, such as patient conditions and the processes of organising EVS influence care outcomes. A review has been designed to understand how EVS are enacted and, specifically, who benefits, why, how and when in order to provide further insight into the design and delivery of EVS. Methods and analysis The purpose of this review is to produce findings that provide explanations of how and why EVS contexts influence their associated outcomes. Evidence on EVS will be consolidated through realist review- A theory-driven approach to evidence synthesis. A realist approach is needed as EVS is a complex intervention. What EVS achieve is likely to vary for different individuals and contexts. We expect to synthesise a range of relevant data such as qualitative, quantitative and mixed-method research in the following stages: Devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesising and refining the programme theory. Ethics and dissemination A formal ethics review is not required as this study is secondary research. Findings will be disseminated in a peer-reviewed journal, at national and international conferences and to relevant professional associations.
Supporting movement and physical activity in people with psychosis: A qualitative exploration of the carer perspective
Background: The need to increase exercise and decrease sedentary behaviour in people diagnosed with psychosis is well-recognised. Aims: We set out to explore caregivers’ perspectives on what supports and prevents physical activity, and how to use carers’ support most effectively. Method: Fourteen caregivers of people diagnosed with psychosis were interviewed. Data were analysed using reflexive thematic analysis, in collaboration with caregivers. Results: Four themes were developed, the first flagging the importance of physical activity, then the others calling for action: (a) Physical inactivity matters: carers are keen to support efforts to increase physical activity in their family or friends because of the enormous impact physical inactivity has on patients, and consequently on carers themselves, such as social isolation and reduction in their own activity. (b) Tell us: without being well-informed about how to help, carers can feel like they are powerless to stop a ‘slow suicide’ or ‘decline’ in patients. (c) Listen to us: through knowing their family and friends well, carers are able to identify important changes in patients and identify successful motivators for them, but these insights can feel uninvited. (d) Ask us: being invited to support activity as a partner in a patients’ care is desirable but having offers of help rejected can “demotivate the motivator.” Conclusions: Caregivers described strong motivation to help patients to be more physically active but can feel that their support is overlooked and under-used by services. Clinical recommendations for carer involvement in physical activity interventions are offered.
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.
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.
Using online patient feedback to improve NHS services: the INQUIRE multimethod study
BackgroundOnline customer feedback has become routine in many industries, but it has yet to be harnessed for service improvement in health care.ObjectivesTo identify the current evidence on online patient feedback; to identify public and health professional attitudes and behaviour in relation to online patient feedback; to explore the experiences of patients in providing online feedback to the NHS; and to examine the practices and processes of online patient feedback within NHS trusts.DesignA multimethod programme of five studies: (1) evidence synthesis and stakeholder consultation; (2) questionnaire survey of the public; (3) qualitative study of patients’ and carers’ experiences of creating and using online comment; (4) questionnaire surveys and a focus group of health-care professionals; and (5) ethnographic organisational case studies with four NHS secondary care provider organisations.SettingThe UK.MethodsWe searched bibliographic databases and conducted hand-searches to January 2018. Synthesis was guided by themes arising from consultation with 15 stakeholders. We conducted a face-to-face survey of a representative sample of the UK population (n = 2036) and 37 purposively sampled qualitative semistructured interviews with people with experience of online feedback. We conducted online surveys of 1001 quota-sampled doctors and 749 nurses or midwives, and a focus group with five allied health professionals. We conducted ethnographic case studies at four NHS trusts, with a researcher spending 6–10 weeks at each site.ResultsMany people (42% of internet users in the general population) read online feedback from other patients. Fewer people (8%) write online feedback, but when they do one of their main reasons is to give praise. Most online feedback is positive in its tone and people describe caring about the NHS and wanting to help it (‘caring for care’). They also want their feedback to elicit a response as part of a conversation. Many professionals, especially doctors, are cautious about online feedback, believing it to be mainly critical and unrepresentative, and rarely encourage it. From a NHS trust perspective, online patient feedback is creating new forms of response-ability (organisations needing the infrastructure to address multiple channels and increasing amounts of online feedback) and responsivity (ensuring responses are swift and publicly visible).LimitationsThis work provides only a cross-sectional snapshot of a fast-emerging phenomenon. Questionnaire surveys can be limited by response bias. The quota sample of doctors and volunteer sample of nurses may not be representative. The ethnographic work was limited in its interrogation of differences between sites.ConclusionsProviding and using online feedback are becoming more common for patients who are often motivated to give praise and to help the NHS improve, but health organisations and professionals are cautious and not fully prepared to use online feedback for service improvement. We identified several disconnections between patient motivations and staff and organisational perspectives, which will need to be resolved if NHS services are to engage with this source of constructive criticism and commentary from patients.Future workIntervention studies could measure online feedback as an intervention for service improvement and longitudinal studies could examine use over time, including unanticipated consequences. Content analyses could look for new knowledge on specific tests or treatments. Methodological work is needed to identify the best approaches to analysing feedback.Study registrationThe ethnographic case study work was registered as Current Controlled Trials ISRCTN33095169.FundingThis project was funded by the National institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 7, No. 38. See the NIHR Journals Library website for further project information.
Barriers and Facilitators to Implementing Cost-Effective Evidence-Based Childhood Cancer Treatment in a Resource-Limited Setting in Egypt: A Qualitative Interview Study
PURPOSEChildhood 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.METHODSWe 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.RESULTSFourteen 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.CONCLUSIONOur 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.
Delegating home visits in general practice: A realist review on the impact on GP workload and patient care
Background UK general practice is being shaped by new ways of working. Traditional GP tasks are being delegated to other staff with the intention of reducing GPs' workload and hospital admissions, and improving patients' access to care. One such task is patient-requested home visits. However, it is unclear what impact delegated home visits may have, who might benefit, and under what circumstances. Aim To explore how the process of delegating home visits works, for whom, and in what contexts. Design and setting A review of secondary data on home visit delegation processes in UK primary care settings. Method A realist approach was taken to reviewing data, which aims to provide causal explanations through the generation and articulation of contexts, mechanisms, and outcomes. A range of data has been used including news items, grey literature, and academic articles. Results Data were synthesised from 70 documents. GPs may believe that delegating home visits is a risky option unless they have trust and experience with the wider multidisciplinary team. Internal systems such as technological infrastructure might help or hinder the delegation process. Healthcare professionals carrying out delegated home visits might benefit from being integrated into general practice but may feel that their clinical autonomy is limited by the delegation process. Patients report short-term satisfaction when visited by a healthcare professional other than a GP. The impact this has on long-term health outcomes and cost is less clear. Conclusion The delegation of home visits may require a shift in patient expectation about who undertakes care. Professional expectations may also require a shift, having implications for the balance of staffing between primary and secondary care, and the training of healthcare professionals.
"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study
BACKGROUND: Funders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. OBJECTIVE: To explore researchers' experiences and perceptions of patient and public involvement (PPI). METHODS: Semi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework. RESULTS: In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. DISCUSSION AND CONCLUSIONS: Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.