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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.
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.