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Understanding the impact of delegated home visiting services accessed via general practice by community-dwelling patients: A realist review protocol
© 2018 Author(s). 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.
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
© 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd. 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.
© 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd 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
© 2017 World Obesity Federation 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.
From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research
© 2018 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL. 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.
© 2015 The Authors. 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. Objective: To investigate how biosample donors talk about their donation and whether they regard samples as ‘gifts’. Methods: In this qualitative study, 21 people, both healthy volunteers and people with health conditions, who had been invited to give biosamples took part in semi-structured narrative interviews. The data were transcribed verbatim and thematically analysed. Results: The term ‘gift’ was considered appropriate by some, but it also evoked puzzlement, especially in relation to ‘waste’ material (e.g. urine or tumour samples). Whilst ‘giving’ or ‘donating’ were commonly mentioned, the noun ‘gift’ signified something more special and deliberate. Analysis suggested biosamples could be interpreted as gifts in several different ways, including unreserved gift; reciprocal gift; collective gift; unwanted/low-value gift; and gift as an exaggeration. Discussion and conclusions: Although people describe a network of exchange consistent with anthropological understandings of gift relationships, lay (and biomedical) understandings of the term ‘gift’ may differ from anthropological definitions. For donors (and researchers), value is attached to the information derived from the sample, rather than the sample itself. Consequently, when asking people for biosamples, we should avoid using the term ‘gift’. Acknowledging the value of participation and the information the sample holds may mean more to potential donors.
GPs' adherence to guidelines for structured assessments of stroke survivors in the community and care homes
© The Author 2015. 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.
Experiences of Reframing during Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies
© 2018 The Authors. Applied Psychology: Health and Well-Being published by John Wiley & Sons Ltd on behalf of International Association of Applied Psychology. Background: Reframing means changing the way that a person thinks or feels about a weight loss attempt or weight loss maintenance to enhance its experience or facilitate its success. Although participants have described this, it has not been explored in the academic literature. Here, we set out to systematically review qualitative studies to examine the ways in which people use and experience reframing in self-directed weight loss. Methods: Seven electronic databases were searched to January 2017 for qualitative studies of adults with overweight or obesity attempting to lose weight or maintain weight loss through self-directed behavior change. Studies must have contained some information pertinent to reframing. Thematic synthesis was used to identify descriptive and analytical themes from the available data. Results: We included 23 studies, representing 723 participants. No study focused specifically on reframing. Most studies involved people who had tried to lose weight previously. In the most common examples of reframing, participants spoke of construing previous weight management attempts as “dieting”, whereas in current attempts they used reframing to move away from this concept. Participants spoke of finding reframing helpful because it removed the sense of depriving themselves and instead allowed them to construe the food choices as healthful. Likewise, the language of dieting created a sense of temporary effort, while construing this as a way of life allowed continuation of conscious control over energy balance without the feeling of undue effort. In some cases, these changes were bolstered by change in self-identity. Conclusions: Some people construe deliberate weight loss as a form of deprivation and cognitively reframe to avoid the negative emotions this creates and to prevent relapse. Reframing the dietary regimen as about healthy eating and a new way of life made weight control seem less burdensome for these participants and they felt able to maintain their efforts.
Experiences of Self-Monitoring in Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies
© The Author(s) 2018. The experience and role of self-monitoring in self-directed weight loss attempts may be distinctly different from that within formal interventions, and has yet to be fully explored. We systematically reviewed qualitative studies to examine experiences of self-monitoring as an aid to self-directed weight loss. Thematic synthesis was used to construct descriptive and analytical themes from the available data. In all, 22 studies (681 participants) were included, in which the uses of self-monitoring ranged from an aid to increase adherence to a tool for facilitating analysis. Self-monitoring also influenced and was influenced by self-perception and emotions. Feelings of shame were linked with abandonment of efforts. Findings highlight the centrality of interpretation of self-monitored data, the implications this interpretation has on sense of self, and the impact of broader discourses. Explicitly framing self-monitoring as a positive tool with which to aid analysis may encourage helpful use of this technique.
Background. Out-patient services are trying to achieve effective and efficient health care in overcrowded, busy clinic settings. 'One stop' and 'open access' clinics have been advocated as a way of improving out-patient services. Objectives. Our aim was to evaluate the effectiveness and efficiency of a guideline-based open access urological investigation service. Methods. General practices were randomized to receive either referral guidelines and access to the investigation service for lower urinary tract symptoms (LUTS) or referral guidelines and access to the investigation service for microscopic haematuria (MH). The study population comprised 66 general practices in the Grampian region of Scotland referring 959 patients. The outcome measures were compliance with guidelines (number of recommended investigations completed), number of general practice consultations, the number and case mix of referrals, waiting time to initial hospital appointment, and the number of patients with a management decision reached at initial appointment and discharged by 12 months after referral. Results. GPs' compliance with referral guidelines increased (difference in means 0.5; 95% confidence interval 0.2-0.8, P < 0.001). Approximately 50% of eligible patients were referred through the new system. The number and case mix of referrals were similar. The intervention reduced the waiting time from referral to initial out-patient appointment (ratio of means 0.7; 0.5-0.9, patients with LUTS only) and increased the number of patients who had a management decision reached at initial appointment (odds ratio 5.8; 2.9-11.5, P < 0.00001, both conditions). Patients were more likely to be discharged within 12 months (odds ratio 1.7; 0.9-3.3, P = 0. 11). There were no significant changes detected in patient outcomes. Overall the new service was probably cost saving to the NHS. Conclusions. The guideline-based open access investigation service streamlined the process of out-patient referral, resulting in a more efficient service with reduced out-patient waiting times, fewer out-patient and investigation appointments and release of specialist and clinic time.
Gefitinib and Methotrexate to Treat Ectopic Pregnancies with a Pre-Treatment Serum hCG 1000–10,000 IU/L: Phase II Open Label, Single Arm Multi-Centre Trial
© 2018 Background: Ectopic pregnancies are a leading cause of maternal mortality. Most are treated surgically. We evaluated the efficacy and safety of combining oral gefitinib (epidermal growth factor receptor inhibitor) with methotrexate to treat larger ectopic pregnancies. Methods: We performed a phase II, single arm, open label study across four hospitals in Edinburgh and Melbourne. We recruited women with a stable tubal ectopic pregnancy and a pre-treatment serum hCG between 1000 and 10,000 IU/L. We administered intramuscular methotrexate (50 mg/m2) once, and oral gefitinib (250 mg) for seven days. The primary outcome was the percentage successfully treated without needing surgery. To show the treatment is at least 70% effective, 28 participants were required, and 24 or more successfully treated without surgery. Secondary outcomes were safety, tolerability, and time to resolution. This study is registered (ACTRN12611001056987). Findings: 30 participants with stable tubal ectopic pregnancies were recruited but two withdrew, leaving 28 participants. The median (± range) pre-treatment serum hCG was 2039 (1031–8575) IU/L and nine had pre-treatment hCGs levels >3000 IU/L. The treatment successfully resolved 86% (24/28) cases with a median (±range) time to resolution of 32 (18–67) days. The treatment caused transient rash and diarrhoea, but no serious adverse events. Interpretation: Combination gefitinib and methotrexate is at least 70% effective in resolving ectopic pregnancies with a pre-treatment serum hCG 1000–10,000 IU/L. This may be a new way to treat most stable ectopic pregnancies, but needs to be validated via a randomised clinical trial.
Improving the referral process for familial breast cancer genetic counselling: Findings of three randomized controlled trials of two interventions
Objectives: To evaluate the effectiveness and cost-effectiveness of two complementary interventions, using familial breast cancer as a model condition. The primary care intervention consisted of providing computerised referral guidelines and related education to GPs. The nurse counsellor intervention evaluated genetic nurses as substitutes for specialist geneticists in the initial assessment and management of referred patients. Design: The computerised referral guidelines study was a pragmatic, cluster randomised controlled trial (RCT) with general practices randomised to intervention or control groups. The nurse counsellor intervention was tested in two concurrent RCTs conducted in separate UK health service locations, using predetermined definitions of equivalence. Setting: The computerised referral guidelines trial took place in general practices in Scotland from November 2000 to June 2001. The nurse counsellor intervention took place in a regional genetics clinic in Scotland, and in two health authorities in Wales served by a single genetics service during 2001. Participants: The computerised referral guidelines study involved GPs and referred patients. Both nurse counsellor intervention trials included women referred for the first time, aged 18 years or over and whose main concern was family history of breast cancer. Interventions: The software system was developed with GPs, presenting cancer genetic referral guidelines in a checklist approach. Intervention GPs were invited to postgraduate update education sessions, and both intervention and control practices received paper-based guidelines. The intervention period was November 2000 to June 2001. For the nurse counsellor trial, trial 1 ran outpatient sessions with the same appointment length as the standard service offered by geneticists, but the nurse counsellor saw new patients at the first appointment and referred back to the GP or on to a clinical geneticist according to locally developed protocol, under the supervision of a consultant geneticist. The control intervention was the current service, which comprised an initial and a follow-up appointment with a clinical geneticist. In trial 2, a nurse counsellor ran outpatient sessions with the same appointment length as the new consultant-based cancer genetics service and new patients were seen at the first appointment and referred as in trial 1. The control intervention was a new service, and comprised collection of family history by telephone followed by a consultation with a clinical assistant or a specialist registrar, supervised by a consultant. The intervention was implemented between 1998 and 2001. Main outcome measures: In the software system trial, the primary outcome was GPs' confidence in their management of patients with concerns about family history of breast cancer. For the nurse counsellor trial, the primary outcome was patient anxiety, measured using standard scales. Results: In the software system trial, 57 practices (230 GPs) were randomised to the intervention group and 29 (116 GPs) to the control group. No statistically significant differences were detected in GPs' confidence or any other outcomes. Fewer than half of the intervention GPs were aware of the software, and only 22 reported using it in practice. The estimated total cost was £3.12 per CD-ROM distributed (2001 prices). For the two arms of the nurse counsellor trial, 289 patients (193 intervention, 96 control) and 297 patients (197 intervention and 100 control) consented, were randomised, returned a baseline questionnaire and attended the clinic for trials 1 and 2 respectively. The analysis in both cases suggested equivalence in all anxiety scores, and no statistically significant differences were detected in other outcomes in either trial. A cost-minimisation analysis suggested that the cost per counselling episode was £10.23 lower in intervention arm than in the control arm and £10.89 higher in the intervention arm than in the control arm (2001 prices) for trials 1 and 2, respectively. Taking the trials together, the costs were sensitive to the grades of doctors and the time spent in consultant supervision of the nurse counsellor, but they were only slightly affected by the grade of nurse counsellor, the selected discount rate and the lifespan of equipment. Conclusions: Computer-based systems in the primary care intervention cannot be recommended for widespread use without further evaluation and testing in real practice settings. Genetic nurse counsellors may be a cost-effective alternative to assessment by doctors. This trial does not provide definitive evidence that the general policy of employing genetics nurse counsellors is sound, as it was based on only three individuals. Future evaluations of computer-based decision support systems for primary care must first address their efficacy under ideal conditions, identify barriers to the use of such systems in practice, and provide evidence of the impact of the policy of such systems in routine practice. The nurse counsellor trial should be replicated in other settings to provide reassurance of the generalisability of the intervention and other models of nurse-based assessment, such as in outreach clinics, should be developed and evaluated. The design of future evaluations of professional substitution should also address issues such as the effect of different levels of training and experience of nurse counsellors, and learning effects. © Queen's Printer and Controller of HMSO 2005. All rights reserved.