Evaluation of training, patient and practitioner perspectives on community-based monitoring of patients with stable age-related macular degeneration compared to hospital-based care: The FENETRE study report no. 1.

PURPOSE: Describe the development, delivery, acceptability and evaluation of a modular training programme for community-based, non-medical practitioners monitoring patients with quiescent neovascular age related macular degeneration (QnAMD). Also, report on a qualitative process evaluation conducted during the pilot phase of a randomised control trial (the FENETRE Study) exploring patient and practitioner acceptability of community-based QnAMD care relative to hospital-based care. METHODS: Learning outcomes from The College of Optometrists' Medical Retina higher qualifications and the Royal College of Ophthalmologists' Common Clinical Competency Framework were used to develop a competency framework for QnAMD care. Training was delivered online, comprising six asynchronous lectures followed by two synchronous case-based discussion webinars, with an accredited assessment of 24 case vignettes. An anonymous evaluation survey was conducted with the first two FENETRE cohorts (n = 38). Separately, we undertook a qualitative process evaluation, sampling purposively in four hospitals and five community-based practices, interviewing nine patients and eight practitioners. RESULTS: Survey responses (n = 26) showed community optometrists were very satisfied (n = 12; 46%) or satisfied (n = 14; 54%) with the training; feedback reflected by qualitative process evaluation data. Overall, optometrists also felt either confident (n = 15; 58%) or very confident (n = 8; 31%) in conducting AMD monitoring appointments following training, a finding also corroborated by interview data from optometrists participating in the initial pilot phase roll-out. Optometrists identified patient convenience and alleviating pressures in hospital care as the primary reasons for acceptability of community pathways. Data from patients entering community practices suggested they largely found this at least as safe and convenient as hospital care, although some patients randomised to hospital care perceived that as safer. CONCLUSION: This pilot study has shown the development and implementation of a collaborative community monitoring model is feasible, with satisfaction from community optometrists for training and accreditation, and broad acceptance for the pathway by both patients and practitioners.

Feasibility of trial procedures for a randomised controlled trial of a community based group exercise intervention for falls prevention for visually impaired older people: the VIOLET study.

BACKGROUND: Visually impaired older people (VIOP) have a higher risk of falling than their sighted peers, and are likely to avoid physical activity. The aim was to adapt the existing Falls Management Exercise (FaME) programme for VIOP, delivered in the community, and to investigate the feasibility of conducting a definitive randomised controlled trial (RCT) of this adapted intervention. METHODS: Two-centre randomised mixed methods pilot trial and economic evaluation of the adapted group-based FaME programme for VIOP versus usual care. A one hour exercise programme ran weekly over 12 weeks at the study sites (Newcastle and Glasgow), delivered by third sector (voluntary and community) organisations. Participants were advised to exercise at home for an additional two hours over the week. Those randomised to the usual activities group received no intervention. Outcome measures were completed at baseline, 12 and 24 weeks. The potential primary outcome was the Short Form Falls Efficacy Scale - International (SFES-I). Participants' adherence was assessed by reviewing attendance records and self-reported compliance to the home exercises. Adherence with the course content (fidelity) by instructors was assessed by a researcher. Adverse events were collected in a weekly phone call. RESULTS: Eighteen participants, drawn from community-living VIOP were screened; 68 met the inclusion criteria; 64 participants were randomised with 33 allocated to the intervention and 31 to the usual activities arm. 94% of participants provided data at the 12 week visit and 92% at 24 weeks. Adherence was high. The intervention was found to be safe with 76% attending nine or more classes. Median time for home exercise was 50 min per week. There was little or no evidence that fear of falling, balance and falls risk, physical activity, emotional, attitudinal or quality of life outcomes differed between trial arms at follow-up. CONCLUSIONS: The intervention, FaME, was implemented successfully for VIOP and all progression criteria for a main trial were met. The lack of difference between groups on fear of falling was unsurprising given it was a pilot study but there may have been other contributory factors including suboptimal exercise dose and apparent low risk of falls in participants. These issues need addressing for a future trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN ID: 16949845 Registered: 21 May 2015.

Empowering members of a rural southern community in Nigeria to plan to take action to prevent maternal mortality: A participatory action research project.

AIMS AND OBJECTIVES: To facilitate the empowerment of members of a rural community to plan to take action to prevent maternal mortality. BACKGROUND: Globally, about 300,000 maternal deaths occur yearly. Sub-Saharan Africa and Southern Asia regions account for almost all the deaths. Within those regions, India and Nigeria account for over a third of the global maternal deaths. Problem of maternal mortality in Nigeria is multifaceted. About 80% of maternal deaths are avoidable, given strategies which include skilled attendants, emergency obstetric care and community mobilisation. In this article, a strategy of community empowerment to plan to take action to prevent maternal mortality is discussed. DESIGN: Participatory action research was used. METHODS: Twelve volunteers were recruited as coresearchers into the study through purposive and snowball sampling who, following an orientation workshop, undertook participatory qualitative data collection with an additional 29 community members. Participatory thematic analysis of the data was undertaken which formed the basis of the plan of action. RESULTS: Community members attributed maternal morbidities and deaths to superstitious causes, delayed referrals by traditional birth attendants, poor transportation and poor resourcing of health facilities. Following critical reflection, actions were planned to empower the people to prevent maternal deaths through community education and advocacy meetings with stakeholders to improve health and transportation infrastructures; training of existing traditional birth attendants in the interim and initiating their collaboration with skilled birth attendants. CONCLUSION: The community is a resource which if mobilised through the process of participatory action research can be empowered to plan to take action in collaboration with skilled birth attendants to prevent maternal mortality. RELEVANCE TO CLINICAL PRACTICE: Interventions to prevent maternal deaths should include community empowerment to have better understanding of their circumstances as well as their collaboration with health professionals.

Effectiveness of portable electronic and optical magnifiers for near vision activities in low vision: a randomised crossover trial.

PURPOSE: To compare the performance of near vision activities using additional portable electronic vision enhancement systems (p-EVES), to using optical magnifiers alone, by individuals with visual impairment. METHODS: A total of 100 experienced optical aid users were recruited from low vision clinics at Manchester Royal Eye Hospital, Manchester, UK, to a prospective two-arm cross-over randomised controlled trial. Reading, performance of near vision activities, and device usage were evaluated at baseline; and at the end of each study arm (Intervention A: existing optical aids plus p-EVES; Intervention B: optical aids only) which was after 2 and 4 months. RESULTS: A total of 82 participants completed the study. Overall, maximum reading speed for high contrast sentences was not statistically significantly different for optical aids and p-EVES, although the critical print size and threshold print size which could be accessed with p-EVES were statistically significantly smaller (p < 0.001 in both cases). The optical aids were used for a larger number of tasks (p < 0.001), and used more frequently (p < 0.001). However p-EVES were preferred for leisure reading by 70% of participants, and allowed longer duration of reading (p < 0.001). During the study arm when they had a p-EVES device, participants were able to carry out more tasks independently (p < 0.001), and reported less difficulty with a range of near vision activities (p < 0.001). CONCLUSIONS: The study provides evidence that p-EVES devices can play a useful role in supplementing the range of low vision aids used to reduce activity limitation for near vision tasks.

Mental illness research in the Gulf Cooperation Council: a scoping review.

Rapid growth and development in recent decades has seen mental health and mental illness emerge as priority health concerns for the Gulf Cooperation Council (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates). As a result, mental health services in the region are being redefined and expanded. However, there is a paucity of local research to guide ongoing service development. Local research is important because service users' experience of mental illness and mental health services are linked to their sociocultural context. In order for service development to be most effective, there is a need for increased understanding of the people who use these services.This article aims to review and synthesize mental health research from the Gulf Cooperation Council. It also seeks to identify gaps in the literature and suggest directions for future research. A scoping framework was used to conduct this review. To identify studies, database searches were undertaken, regional journals were hand-searched, and reference lists of included articles were examined. Empirical studies undertaken in the Gulf Cooperation Council that reported mental health service users' experience of mental illness were included. Framework analysis was used to synthesize results. Fifty-five studies met inclusion criteria and the following themes were identified: service preferences, illness (symptomology, perceived cause, impact), and recovery (traditional healing, family support, religion). Gaps included contradictory findings related to the supportive role of the Arabic extended family and religion, under-representation of women in study samples, and limited attention on illness management outside of the hospital setting.From this review, it is clear that the sociocultural context in the region is linked to service users' experience of mental illness. Future research that aims to fill the identified gaps and develop and test culturally appropriate interventions will aid practice and policy development in the region.

The causes of falls: views of older people with visual impairment.

BACKGROUND: Sight impairment increases with age and, compared with the general older population, older people with sight impairment are more likely to fall. There is a growing body of evidence on the views and perceptions of older people about falls, but little is published on the views of older people with sight impairment. OBJECTIVE: To explore what older people with sight impairment believe to be the causes of falls. DESIGN: A qualitative design was used, incorporating focus groups and interviews in which participants discussed falls and falls prevention. Framework analysis was employed to identify themes arising from participants' discussions of the causes of falls. SETTING AND PARTICIPANTS: Fifty-four community dwelling men and women with sight impairment, aged 65 and over, were recruited from across Greater Manchester, UK. RESULTS: Five types of factors were identified that were believed to cause falls: (i) health issues and changes in balance caused by ageing; (ii) cognitive and behavioural factors; (iii) the impact of sight impairment on getting around the home; (iv) the impact of sight impairment on negotiating the environment away from home; and (v) unexplained falls. DISCUSSION AND CONCLUSIONS: Older people with sight impairment reported many researched risk factors previously identified by older people without sight impairment but also described many perceived risks unique to people with sight impairment. There are few interventions to prevent falls aimed at older people with sight impairment, and the results of this study allow further tailoring of such interventions based on views of older people with sight impairment.

Facilitating large-scale implementation of evidence based health care: insider accounts from a co-operative inquiry.

BACKGROUND: Facilitators are known to be influential in the implementation of evidence-based health care (EBHC). However, little evidence exists on what it is that they do to support the implementation process. This research reports on how knowledge transfer associates (KTAs) working as part of the UK National Institute for Health Research 'Collaboration for Leadership in Applied Health Research and Care' for Greater Manchester (GM CLAHRC) facilitated the implementation of EBHC across several commissioning and provider health care agencies. METHODS: A prospective co-operative inquiry with eight KTAs was carried out comprising of 11 regular group meetings where they reflected critically on their experiences. Twenty interviews were also conducted with other members of the GM CLAHRC Implementation Team to gain their perspectives of the KTAs facilitation role and process. RESULTS: There were four phases to the facilitation of EBHC on a large scale: (1) Assisting with the decision on what EBHC to implement, in this phase, KTAs pulled together people and disparate strands of information to facilitate a decision on which EBHC should be implemented; (2) Planning of the implementation of EBHC, in which KTAs spent time gathering additional information and going between key people to plan the implementation; (3) Coordinating and implementing EBHC when KTAs recruited general practices and people for the implementation of EBHC; and (4) Evaluating the EBHC which required the KTAs to set up (new) systems to gather data for analysis. Over time, the KTAs demonstrated growing confidence and skills in aspects of facilitation: research, interpersonal communication, project management and change management skills. CONCLUSION: The findings provide prospective empirical data on the large scale implementation of EBHC in primary care and community based organisations focusing on resources and processes involved. Detailed evidence shows facilitation is context dependent and that 'one size does not fits all'. Co-operative inquiry was a useful method to enhance KTAs learning. The evidence shows that facilitators need tailored support and education, during the process of implementation to provide them with a well-rounded skill-set. Our study was not designed to demonstrate how facilitators contribute to patient health outcomes thus further prospective research is required.

The p-EVES study design and methodology: a randomised controlled trial to compare portable electronic vision enhancement systems (p-EVES) to optical magnifiers for near vision activities in visual impairment.

PURPOSE: To describe the study design and methodology for the p-EVES study, a trial designed to determine the effectiveness, cost-effectiveness and acceptability of portable Electronic Vision Enhancement System (p-EVES) devices and conventional optical low vision aids (LVAs) for near tasks in people with low vision. METHODS: The p-EVES study is a prospective two-arm randomised cross-over trial to test the hypothesis that, in comparison to optical LVAs, p-EVES can be: used for longer duration; used for a wider range of tasks than a single optical LVA and/or enable users to do tasks that they were not able to do with optical LVAs; allow faster performance of instrumental activities of daily living; and allow faster reading. A total of 100 adult participants with visual impairment are currently being recruited from Manchester Royal Eye Hospital and randomised into either Group 1 (receiving the two interventions A and B in the order AB), or Group 2 (receiving the two interventions in the order BA). Intervention A is a 2-month period with conventional optical LVAs and a p-EVES device, and intervention B is a 2-month period with conventional optical LVAs only. RESULTS: The study adopts a mixed methods approach encompassing a broad range of outcome measures. The results will be obtained from the following primary outcome measures: Manchester Low Vision Questionnaire, capturing device 'usage' data (which devices are used, number of times, for what purposes, and for how long) and the MNRead test, measuring threshold print size, critical print size, and acuity reserve in addition to reading speed at high (≈90%) contrast. Results will also be obtained from a series of secondary outcome measures which include: assessment of timed instrumental activities of daily living and a 'near vision' visual functioning questionnaire. A companion qualitative study will permit comparison of results on how, where, and under what circumstances, p-EVES devices and LVAs are used in daily life. A health economic evaluation will provide results on: the incremental cost-effectiveness of p-EVES compared to optical magnifiers; cost-effectiveness; and cost-utility. CONCLUSIONS: The evidence base in low vision rehabilitation is modest and further high quality clinical trials are required to inform decisions on healthcare provision. The p-EVES study findings are anticipated to contribute to this broader evidence requirement, with the methodological issues evident here being relevant to other trials within the field.

A paradox of problems in accessing general practice: a qualitative participatory case study.

BACKGROUND: Despite longstanding problems of access to general practice, attempts to understand and address the issues do not adequately include perspectives of the people providing or using care, nor do they use established theories of access to understand complexity. AIM: To understand problems of access to general practice from the multiple perspectives of service users and staff using an applied theory of access. DESIGN AND SETTING: A qualitative participatory case study in an area of northwest England. METHOD: A community-based participatory approach was used with qualitative interviews, focus groups, and observation to understand perspectives about accessing general practice. Data were collected between October 2015 and October 2016. Inductive and abductive analysis, informed by Levesque et al's theory of access, allowed the team to identify complexities and relationships between interrelated problems. RESULTS: This study presents a paradox of problems in accessing general practice, in which the demand on general practice both creates and hides unmet need in the population. Data show how reactive rules to control demand have undermined important aspects of care, such as continuity. The layers of rules and decreased continuity create extra work for practice staff, clinicians, and patients. Complicated rules, combined with a lack of capacity to reach out or be flexible, leave many patients, including those with complex and/or unrecognised health needs, unable to navigate the system to access care. This relationship between demand and unmet need exacerbates existing health inequities. CONCLUSION: Understanding the paradox of access problems allows for different targets for change and different solutions to free up capacity in general practice to address the unmet need in the population.

Interventions for improving adherence to ocular hypotensive therapy.

BACKGROUND: Poor adherence to therapy is a significant healthcare issue, particularly in patients with chronic disease such as open-angle glaucoma. Treatment failure may necessitate unwarranted changes of medications, increased healthcare expenditure and risk to the patient if surgical intervention is required. Simplifying eye drop regimes, providing adequate information, teaching drop instillation technique and ongoing support according to the patient need may have a positive effect on improving adherence. OBJECTIVES: To summarise the effects of interventions for improving adherence to ocular hypotensive therapy in people with ocular hypertension (OHT) or glaucoma. SEARCH METHODS: We searched CENTRAL (which contains the Cochrane Eyes and Vision Group Trials Register) (The Cochrane Library 2012, Issue 6), MEDLINE (June 1946 to June 2012), EMBASE (June 1980 to June 2012), Cumulative Index to Nursing and Allied Health Literature (CINAHL) (June 1937 to June 2012), PsycINFO (1806 to June 2012), PsycEXTRA (1908 to June 2012), Web of Science (1970 to June 2012), ZETOC (1993 to June 2012), OpenGrey (System for Information on Grey Literature in Europe) (www.opengrey.eu/), the metaRegister of Controlled Trials (mRCT) (www.controlled-trials.com), ClinicalTrials.gov (www.clinicaltrials.gov) and the WHO International Clinical Trials Registry Platform (ICTRP) (www.who.int/ictrp/search/en). We did not use any date or language restrictions in the electronic searches for trials. The electronic databases were last searched on 26 June 2012. We did not search the National Research Register (NNR) as this resource has now been now archived. We contacted pharmaceutical manufacturers to request unpublished data and searched conference proceedings for the Association for Research in Vision and Ophthalmology (ARVO), and the Annual Congress for the Royal College of Ophthalmologists (RCO). SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs that compared interventions to improve adherence to ocular hypotensive therapy for patients with OHT or glaucoma. DATA COLLECTION AND ANALYSIS: At least two authors independently assessed the search results for eligibility and extracted data for included trials onto specifically designed forms. We did not pool data due to clinical and methodological heterogeneity. MAIN RESULTS: Sixteen trials (1565 participants) met the inclusion criteria. Seven studies investigated some form of patient education. In six of these studies this education was combined with other behavioural change interventions including tailoring daily routines to promote adherence to eye drops. Eight studies compared different drug regimens (one of these trials also compared open and masked monitoring) and one study investigated a reminder device. The studies were of variable quality and some were at considerable risk of bias; in general, the length of follow-up was short at less than six months with only two studies following up to 12 months. Different interventions and outcomes were reported and so it was not possible to produce an overall estimate of effect. There was some evidence from three studies that education combined with personalised interventions, that is, more complex interventions, improved adherence to ocular hypotensive therapy. There was less information on other outcomes such as persistence and intraocular pressure, and no information on visual field defects, quality of life and cost. There was weak evidence as to whether people on simpler drug regimens were more likely to adhere and persist with their ocular hypotensive therapy. A particular problem was the interpretation of cross-over studies, which in general were not reported correctly. One study investigated a reminder device and monitoring but the study was small and inconclusive. AUTHORS' CONCLUSIONS: Although complex interventions consisting of patient education combined with personalised behavioural change interventions, including tailoring daily routines to promote adherence to eye drops, may improve adherence to glaucoma medication, overall there is insufficient evidence to recommend a particular intervention. The interventions varied between studies and none of the included studies reported on the cost of the intervention. Simplified drug regimens also could be of benefit but again the current published studies do not provide conclusive evidence. Future studies should follow up for at least one year, and could benefit from standardised outcomes.

Pain related to intravitreal injections for age-related macular degeneration: a qualitative study of the perspectives of patients and practitioners.

OBJECTIVES: Ocular pain is a commonly reported finding in the intravitreal injection procedure, but post-injection experiences and patient adherence to treatment remain underexplored. We therefore aimed to identify key variations in the intravitreal injection procedure that may influence pain, and to gain insights into the post-injection experience and treatment adherence from the perspective of patients and practitioners. DESIGN: Qualitative semistructured interview study using reflexive thematic analysis of transcripts. SETTING: Hospital Eye Clinic in Wales, UK. Interviews were conducted between May and September 2019. PARTICIPANTS: Purposive sample of patients aged ≥50 years with neovascular age-related macular degeneration and no other retinal pathology who had received at least six intravitreal injections, and practitioners including ophthalmologists, registered nurses and optometrists who performed intravitreal injections at the research site. RESULTS: Data saturation was reached with 21 interviews: 14 patients and 7 practitioners. Three main themes were identified from the analysis: fear of losing eyesight and treatment anxiety influence patient adherence to treatment, variability in pain experience during treatment, and post-injection experience and impact on patient recovery. To reassure patients feeling apprehensive about the injections, practitioners promoted safety and trust, and used techniques to manage anxiety. Key variations that may influence pain identified were application of antiseptic or anaesthetic, injecting methods and communication. During injection, patients reported a dull-aching and sharp pain, contrary to practitioners' perspective of feeling a 'pressure'. Patients described prolonged soreness and irritation of up to 36 hours post-injection affecting their sleep and recovery. CONCLUSION: Establishing rapport supported patients to recognise the necessity of ongoing treatment to prevent sight loss; however, inadequate pain management led to undesirable outcomes. Practitioners should use pain assessment tools during and immediately after injection and provide ongoing consistent information to help patients manage pain at home.

Resilience among asylum seekers living with HIV.

BACKGROUND: A small body of evidence demonstrates the challenges faced by migrant communities living with HIV but has yet to consider in-depth the experience of asylum seekers whose residency status is undetermined. The overall aim of our study was to explore the experiences of those who are both living with HIV and seeking asylum. This paper focuses on the stressors precipitated by the HIV diagnosis and by going through the asylum system; as well as participants' resilience in responding to these stressors and the consequences for their health and wellbeing. METHODS: We conducted an ethnographic study. Fieldwork took place in the UK between 2008-2009 and included: 350 hours of observation at voluntary services providing support to black and minority ethnic groups living with HIV; 29 interviews and four focus group discussions with those who were seeking asylum and living with HIV; and 15 interviews with their health and social care providers. Data were analysed using the constant comparative method. RESULTS: There were three main stressors that threatened participants' resilience. First, migration caused them to leave behind many resources (including social support). Second, stigmatising attitudes led their HIV diagnosis to be a taboo subject furthering their isolation. Third, they found themselves trapped in the asylum system, unable to influence the outcome of their case and reliant on HIV treatment to stay alive. Participants were, however, very resourceful in dealing with these experiences. Resilience processes included: staying busy, drawing on personal faith, and the support received through HIV care providers and voluntary organisations. Even so, their isolated existence meant participants had limited access to social resources, and their treatment in the asylum system had a profound impact on perceived health and wellbeing. CONCLUSIONS: Asylum seekers living with HIV in the UK show immense resilience. However, their isolation means they are often unable to deal with their treatment in the asylum system, with negative consequences for their perceived health and wellbeing.

Observing pain management practice on a medical unit following changes arising from an action research study.

AIM: To describe pain assessment practice within a medical unit, to identify factors that may affect the assessment of pain and evaluate changes in practice. BACKGROUND: Pain is a problem for patients in all areas of a hospital, but its assessment and management on medical units had not been investigated. An initial assessment of practice found that pain was not consistently assessed and managed on the unit. A variety of activities have been employed during an action research study to change pain management practice. METHOD: Naturalistic unstructured participant observation of nurses and structured patient interviews were conducted. RESULTS: The need to communicate with many people led to interruptions, multi-tasking and practical problems were observed which appeared to affect the provision of nursing care, in particular, the administration of medications. These factors also prevented a comprehensive assessment of pain, although the assessment of pain intensity appeared to have increased. DISCUSSION: The constant activity and interruptions observed may make it difficult for patients to discuss their experience of pain in detail. These accepted, every day and taken-for-granted aspects of nursing observed appeared to reduce opportunities for comprehensive pain assessment. CONCLUSION: Pain assessment is one of a number of nursing activities, obtaining a pain score appears to have become routine practice. Nursing takes place in a complex environment, which may disrupt the provision of nursing care and impede communication. RELEVANCE TO PRACTICE: To increase nurses awareness of the complexity of every day practice, the numerous tasks required, interruptions to the provision of care and the resultant effect on pain assessment and management. They need to then identify and reflect on these factors prior to attempting to change their practice.

Accessing primary care and the importance of 'human fit': a qualitative participatory case study.

BACKGROUND: Good access to primary care is an important determinant of population health. While the academic literature on access to care emphasises its complexity, policies aimed at improving access to general practice in the UK have tended to focus on measurable aspects, such as timeliness or number of appointments. AIM: To fill the gap between the complex understanding of primary care access in the literature and the narrow definition of access assumed in UK policies. DESIGN AND SETTING: Qualitative, community-based participatory case study within the geographic footprint of a clinical commissioning group in the north west of England. Data collection took place from October 2015 to October 2016. Purposive sampling and snowball approaches were used to achieve maximum variation among service users and providers across general practice settings. METHOD: Levesque et al's conceptual framework of patient-centred access was applied and the study used multiple qualitative methods (interviews, focus groups, and observation). Analysis was ongoing, iterative, inductive, and abductive with the theory. RESULTS: The comprehensiveness of Levesque et al's access theory resonated with diverse participant experiences. However, while its strength was to highlight the importance of people's abilities to access care, this study's data suggest equal importance of healthcare workforce abilities to make care accessible. Thus, the authors present a definition of access as the 'human fit' between the needs and abilities of people in the population and the abilities and capacity of people in the healthcare workforce, and provide a modified conceptual framework reflecting these insights. CONCLUSION: An understanding of access as 'human fit' has the potential to address longstanding problems of access within general practice, focusing attention on the need for staff training and support, and emphasising the importance of continuity of care.

Virtual clinics for glaucoma care - Patients' and clinicians' experiences and perceptions: a qualitative evaluation.

BACKGROUND: The role of glaucoma virtual clinics has developed to help meet demand for capacity within busy glaucoma services. There is limited research of patient and clinician experiences and perceptions of these clinics and the aim of this study is to provide further information to help improve patient experience and guide service delivery. METHODS: A mixed methods research design was employed comprising of a patient satisfaction survey, and patient and clinician interviews. Consultant ophthalmologists were recruited from throughout the UK, and patients and data gathering clinical staff recruited from the Manchester Royal Eye Hospital and Bristol Eye Hospital. RESULTS: We received a total of 148 patient satisfaction questionnaires with an overall response rate of 55.4%. Most respondents were diagnosed with primary open angle glaucoma (33.9%) at Manchester and glaucoma suspect status at Bristol (50.6%). Patients had high levels of confidence in the person conducting the tests (94.8% Manchester, 98.8% Bristol), and most were likely to recommend the service to family or friends (94.8% Manchester, 92.6% Bristol). We interviewed 10 consultant ophthalmologists, 10 data gathering staff and 20 patients. A number of key themes emerged from the transcribed interviews including: patient experience, clinician perception of patient experience, service delivery, staffing and staff experience, and patient safety. CONCLUSIONS: Glaucoma virtual clinics can be acceptable to both clinicians and patients, including those with a varied complexity of glaucoma and glaucoma-related disease. Dissatisfaction seemed to relate to poor communication or processes and systems within the service rather than complexity of disease.

Reciprocity membership: A potential pathway towards recovery from mental illness in a Middle Eastern context.

While recovery has become a popular framework for mental health services, there is limited understanding of its applicability outside of Western countries. In fact, recent studies in non-Anglophone populations suggest that recovery is contextually dependent and that the implementation of mainstream recovery models risks imposing inappropriate values. We used classic grounded theory to explore the main concerns of mental health service users in a Middle Eastern context and the strategies they use to resolve those concerns. The theory of 'reciprocity membership', a process involving ongoing mutual exchange with a group or community, was developed. Reciprocity membership becomes balanced when an individual is satisfied with their 'contribution to' the group, the 'acknowledgement from' other group members, the 'expectations of' the group, and their 'alignment with' the values of the group. Balance among these conditions is appraised by a sub-process called 'valuing', and developed or maintained by two further sub-processes called 'positioning' and 'managing relationships'. Balanced reciprocity membership seems to be associated with recovery. This study is the first in-depth exploration of people's experience of mental illness in a Middle Eastern context; findings provide evidence for a novel potential pathway towards recovery.

Normalisation process theory and the implementation of a new glaucoma clinical pathway in hospital eye services: Perspectives of doctors, nurses and optometrists.

BACKGROUND: Normalisation process theory reports the importance of contextual integration in successfully embedding novel interventions, with recent propositions detailing the role that 'plasticity' of intervention components and 'elasticity' of an intended setting contribute. We report on the introduction of a clinical pathway assessing patient non-responsiveness to treatment for glaucoma and ocular hypertension. The aim of this study was to assess the feasibility of implementing the Cardiff Model of Glaucoma Care into hospital eye services, identifying any issues of acceptability for staff through the filter of normalisation process theory. METHODS: A prospective observational study was undertaken in four hospital eye services. This incorporated detailed qualitative semi-structured interviews with staff (n = 8) to gather their perceptions on the intervention's usefulness and practicality. In addition, observational field notes of patient and staff consultations (n = 88) were collected, as well as broader organisational observations from within the research sites (n = 52). Data collection and analysis was informed by the normalisation process theory framework. RESULTS: Staff reported the pathway led to beneficial knowledge on managing patient treatment, but the model was sometimes perceived as overly prescriptive. This perception varied significantly based on the composition of clinics in relation to staff experience, staff availability and pre-existing clinical structures. The most commonly recounted barrier came in contextually integrating into sites where wider administrative systems were inflexible to intervention components. CONCLUSIONS: Flexibility will be the key determinant of whether the clinical pathway can progress to wider implementation. Addressing the complexity and variation associated with practice between clinics required a remodelling of the pathway to maintain its central benefits but enhance its plasticity. Our study therefore helps to confirm propositions developed in relation to normalisation process theory, contextual integration, intervention plasticity, and setting elasticity. This enables the transferability of findings to healthcare settings other than ophthalmology, where any novel intervention is implemented.

FENETRE study: quality-assured follow-up of quiescent neovascular age-related macular degeneration by non-medical practitioners: study protocol and statistical analysis plan for a randomised controlled trial.

OBJECTIVE: Management of age-related macular degeneration (AMD) places a high demand on already constrained hospital-based eye services. This study aims to assess the safety and quality of follow-up within the community led by suitably trained non-medical practitioners for the management of quiescent neovascular AMD (QnAMD). METHODS/DESIGN: This is a prospective, multisite, randomised clinical trial. 742 participants with QnAMD will be recruited and randomised to either continue hospital-based secondary care or to receive follow-up within a community setting. Participants in both groups will be monitored for disease reactivation over the course of 12 months and referred for treatment as necessary. Outcomes measures will assess the non-inferiority of primary care follow-up accounting for accuracy of the identification of disease reactivation, patient loss to follow-up and accrued costs and the budget impact to the National Health Service. ETHICS AND DISSEMINATION: Research ethics approval was obtained from the London Bloomsbury Ethics Committee. The results of this study will be disseminated through academic peer-reviewed publications, conferences and collaborations with eye charities to insure the findings reach the appropriate patient populations. TRIAL REGISTRATION NUMBER: NCT03893474.

Understanding the stigma of hyperemesis gravidarum: qualitative findings from an action research study.

BACKGROUND: Severe nausea and vomiting in pregnancy (hyperemesis gravidarum) can be a distressing and debilitating condition when it is uncontrolled. For all concerned, hyperemesis gravidarum can be difficult to treat satisfactorily, and women tend to be admitted to a hospital several times during early pregnancy. Our research objectives were to describe the experience of hyperemesis gravidarum from the perspective of affected women and to explore with health care professionals the barriers and facilitators to caring for women with the condition. METHODS: A qualitative research design was used. A total of 18 women were interviewed, of whom 8 had two or more interviews. Seven focus groups were conducted with health care professionals. Thematic data analysis was undertaken. RESULTS: The main themes emerging from the women's data were the effect and burden of the symptoms of the condition and feeling unpopular with staff. From the practitioner data, the main themes were the validity (or invalidity) of hospitalization for women, skepticism of the severity of symptoms, the psychological and social dimensions of the condition, and inadequate primary care services. CONCLUSIONS: The main findings revealed that hyperemesis gravidarum is a debilitating condition and that the unhelpful attitudes of practitioners may affect whether women access timely and appropriate care. Many women appear to be unsupported by primary care services and are distressed when perceived either as "time wasters" or someone else's responsibility. We propose that a tailored assessment and care plan for each woman is needed to help them control their symptoms, which ideally should be delivered in the community.

Acceptability, adherence and economic analyses of a new clinical pathway for the identification of non-responders to glaucoma eye drops: a prospective observational study.

BACKGROUND/AIMS: Assess whether a new clinical pathway for glaucoma was acceptable to patients and healthcare professionals and whether it provided useful clinical information on non-responsiveness and non-adherence to the treatment of elevated intraocular pressure with latanoprost eye drops. METHODS: A single arm non-randomised prospective observational study incorporating new glaucoma/ocular hypertension patients. To assess issues of acceptability, qualitative observation and interviews were conducted with patients and healthcare professionals. To determine clinical responsiveness, intraocular pressures were measured before and 4 hours after a clinician-instilled eye drop over two distinct appointments. Adherence data were collected using a Medicine Event Monitoring System. Economic analyses compared the costs between novel and standard care pathways. RESULTS: Of 72 patients approached, 53 entered the study (74.3%) and 50 completed all procedures (94.3%). Intraocular pressure was reduced more than 15% in 83 out of 92 study eyes by final visit (90.2%). The non-response rate was 5.1% once the effect of low adherence was minimised. For the 1376 drop instillation days under observation, eye drops were instilled as prescribed on 1004 days (73.0%), over-instilled on 137 days (9.9%) and not instilled on 235 days (17.1%). The Cardiff Model of Glaucoma Care involved negligible cost, although acceptance for healthcare professionals showed variation. CONCLUSIONS: The Cardiff Model of Glaucoma Care offers novel clinical and adherence insights at marginal costs while acceptable to patients. Healthcare professionals felt that 4 hour and 4 week follow-up appointments could cause administrative problems. A streamlined version of the pathway has therefore been developed to facilitate clinical adoption. TRIAL REGISTRATION NUMBER: ISRCTNID:ISRCTN75888393.