Cultural factors affecting the development of an evidence-based information service in a third sector provider of complementary cancer care

Abstract Cultural factors affecting the development of an evidence-based information service in a third sector provider of complementary cancer care Matthew Breckons Introduction Many people with cancer access complementary and alternative medicine (CAM) and a need for high quality information was emphasised in reports by the House of Lords and the National Institute for Health and Clinical Excellence. Organisational culture, incorporating people’s underlying assumptions, values and actions, has been highlighted as an important factor when attempting to introduce evidence-based practices. Opinion is divided over the relevance of evidence to CAM practice, although the influence that this has on the cultural context of a CAM organisation is not understood. Aims To identify cultural factors affecting the introduction of an evidence-based information service in a third-sector CAM organisation and, in light of factors identified, to suggest feasible innovations to achieve a more evidenced-based approach. Methods Access to the charity was gained through a Knowledge Transfer Partnership. Soft Systems Methodology, a form of action research, was used to carry out four ‘learning cycles’ in which data was collected and fed back to staff at the organisation to prompt discussion on what could be improved. Learning cycles focused on improving the quality of web-based and printed information and gaining an understanding of how the information service could be improved from staff and service-user perspectives. Results Results suggested that a lack of time and emphasis on marketing values led to difficulties feeding back results and making changes that were perceived to reduce demand for the charity’s services. A lack of management support and a reluctance to implement rules made introducing any form of information policy problematic. Additionally, structural factors such as a large team of part-time staff and a lack of financial resources led to communication difficulties as well as limiting the opportunity for staff development. Conclusions This is the first study to document systematic attempts to make evidence-based changes in a third sector CAM organisation. As such, this study has generated results demonstrating how cultural and structural constraints in this type of organisation may influence attempts to make evidence-based changes. Introduction of an initiative such as the Information Accreditation Scheme (IAS) may provide benefits to an organisation of this type by guiding the development of information production systems at the same time as raising the profile of the organisation. The findings of this study strongly suggest that, despite demands from policy makers for the provision of evidence-based CAM information, there may be systematic difficulties experienced by organisations responsible for the production of this information. Further research is needed to understand how producers of CAM information can be supported in providing high quality, evidence-based materials

Developing Effective and Efficient care pathways in chronic Pain: DEEP study protocol

Background Pain affecting the face or mouth and lasting longer than three months (“chronic orofacial pain”, COFP) is relatively common in the UK. This study aims to describe and model current care pathways for COFP patients, identify areas where current pathways could be modified, and model whether these changes would improve outcomes for patients and use resources more efficiently. Methods/Design The study takes a prospective operations research approach. A cohort of primary and secondary care COFP patients (n = 240) will be recruited at differing stages of their care in order to follow and analyse their journey through care. The cohort will be followed for two years with data collected at baseline 6, 12, 18, and 24 months on: 1) experiences of the care pathway and its impacts; 2) quality of life; 3) pain; 4) use of health services and costs incurred; 5) illness perceptions. Qualitative in-depth interviews will be used to collect data on patient experiences from a purposive sub-sample of the total cohort (n = 30) at baseline, 12 and 24 months. Four separate appraisal groups (public, patient, clincian, service manager/commissioning) will then be given data from the pathway analysis and asked to determine their priority areas for change. The proposals from appraisal groups will inform an economic modelling exercise. Findings from the economic modelling will be presented as incremental costs, Quality Adjusted Life Years (QALYs), and the incremental cost per QALY gained. At the end of the modelling a series of recommendations for service change will be available for implementation or further trial if necessary. Discussion The recent white paper on health and the report from the NHS Forum identified chronic conditions as priority areas and whilst technology can improve outcomes, so can simple, appropriate and well-defined clinical care pathways. Understanding the opportunity cost related to care pathways benefits the wider NHS. This research develops a method to help design efficient systems built around one condition (COFP), but the principles should be applicable to a wide range of other chronic and long-term conditions

COVID-19 Pandemic in the United Kingdom

Objectives To describe epidemiological data on cases of COVID-19 and the spread of Severe Acute Respiratory Syndrome Coronavirus 2 in the United Kingdom (UK), and the subsequent policy and technological response to the pandemic, including impact on healthcare, business and the economy. Methods Epidemiological, business and economic data were extracted from official government sources covering the period 31st January to 13th August 2020; healthcare system data up to end of June 2019. Results UK-wide COVID-19 cases and deaths were 313,798 and 46,706 respectively (472 cases and 70 deaths per 100,000 population) by 12th August. There were regional variations in England, with London and North West (756 and 666 cases per 100,000 population respectively) disproportionately affected compared with other regions. As of 11th August, 13,618,470 tests had been conducted in the UK. Increased risk of mortality was associated with age (≥60 years), gender (male) and BAME groups. Since onset of the pandemic, emergency department attendance, primary care utilisation and cancer referrals and inpatient/outpatient referrals have declined; emergency ambulance and NHS111 calls increased. Business sectors most impacted are the arts, entertainment and recreation, followed by accommodation and food services. Government interventions aimed at curtailing the business and economic impact have been implemented, but applications for state benefits have increased. Conclusions The impact of COVID-19 on the UK population, health system and economy has been profound. More data are needed to implement the optimal policy and technological responses to preventing further spikes in COVID-19 cases, and to inform strategic planning to manage future pandemics

Rationing care by frailty during the COVID-19 pandemic

The coronavirus disease 2019 (COVID-19) pandemic is disproportionately affecting older people and those with underlying comorbidities. Guidelines are needed to help clinicians make decisions regarding appropriate use of limited NHS critical care resources. In response to the pandemic, the National Institute for Health and Care Excellence published guidance that employs the Clinical Frailty Scale (CFS) in a decision-making flowchart to assist clinicians in assessing older individuals’ suitability for critical care. This commentary raises some important limitations to this use of the CFS and cautions against the potential for unintended impacts. The COVID-19 pandemic has allowed the widespread implementation of the CFS with limited training or expert oversight. The CFS is primarily being used to assess older individuals’ risk of adverse outcome in critical care, and to ration access to care on this basis. While some form of resource allocation strategy is necessary for emergencies, the implementation of this guideline in the absence of significant pressure on resources may reduce the likelihood of older people with frailty, who wish to be considered for critical care, being appropriately considered, and has the potential to reinforce the socio-economic gradient in health. Our incomplete understanding of this novel disease means that there is a need for research investigating the short-term predictive abilities of the CFS on critical care outcomes in COVID-19. Additionally, a review of the impact of stratifying older people by CFS score as a rationing strategy is necessary in order to assess its acceptability to older people as well as its potential for disparate impacts

Care pathways in persistent orofacial pain: qualitative evidence from the DEEP study

Persistent orofacial pain is relatively common and known to have an adverse effect on quality of life. Previous studies suggest that the current care pathway may be problematic, but it is not well understood which health services patients access and what their experience is. The aim of this study was to explore care pathways and their impact from the perspective of patients. Qualitative interviews were conducted with a maximum variation sample of patients recruited from primary (community based) and secondary (specialist hospital based) care in the United Kingdom. Questions focused on the stages in their pathway and the impact of the care that they had received. Interviews were digitally recorded and transcribed verbatim, and analysis followed principles of the constant comparative method. NVivo 10 was used to help organize and analyze data. Twenty-two patients were interviewed at baseline, and 18 took part in a second interview at 12 mo. Three main themes emerged from the data: the “fluidity of the care pathway,” in which patients described moving among health care providers in attempts to have their pain diagnosed and managed, occurring alongside a “failure to progress,” where despite multiple appointments, patients described frustration at delays in obtaining a diagnosis and effective treatment for their pain. Throughout their care pathways, patients described the “effects of unmanaged pain,” where the longer the pain went unmanaged, the greater its potential to negatively affect their lives. Findings of this study suggest that the current care pathway is inefficient and fails to meet patient needs. Future work needs to focus on working with stakeholder groups to redesign patient-centered care pathways

A cross-cultural investigation of the conceptualisation of frailty in northern Tanzania

Frailty prevalence is higher in low- and middle-income countries (LMICs) compared with high-income countries when measured by biomedical frailty models, the most widely used being the frailty phenotype. Frailty in older people is becoming of global public health interest as a means of promoting health in old age in LMICs. As yet, little work has been done to establish to what extent the concept of frailty, as conceived according to 'western' biomedicine, has cross-cultural resonance for a low-income rural African setting. This study aimed to investigate the meaning of frailty contextually, using the biomedical concept of the frailty phenotype as a framework. Qualitative interviews were conducted with a purposive sample of older adults, their care-givers and community representatives in rural northern Tanzania. Thirty interview transcripts were transcribed, translated from Kiswahili to English and thematically analysed. Results reveal that despite superficial similarities in the understanding of frailty, to a great extent the physical changes highlighted by the frailty phenotype were naturalised, except when these were felt to be due to a scarcity of resources. Frailty was conceptualised as less of a physical problem of the individual, but rather, as a social problem of the community, suggesting that the frailty construct may be usefully applied cross-culturally when taking a social equity focus to the health of older people in LMICs

Development of patient-centric eating advice for complete denture wearers

Background Edentulous people eat less healthily, and wearing dentures impairs eating function and enjoyment. Objective To apply a sequential approach to integrate scientific evidence, and patient and professional experience to co-develop intervention to support better eating with dentures. Methods Focus groups, two with purposive samples of patients and two with dental professionals, explored experiences and opinions about advice on eating with complete dentures. Findings were distilled with evidence from the literature to underpinned concepts for eating interventions. User engagement informed prioritisation of ideas and led to the development of a leaflet on eating with dentures. Results Patients receive no advice on what they can realistically expect when eating with dentures, and professionals lacked confidence to provide eating advice. Patients did not think dentists a credible provider of eating advice, feeling peer support more appropriate and offering numerous strategies for eating with dentures. Concepts for eating intervention included a patient leaflet, Web-based eating interventions, patient support blogs, waiting room videos and improved nutrition training for dental professionals. User feedback informed prioritisation of ideas, leading to the development of a leaflet on eating with dentures. Justified by the data, the leaflet focused on patient-generated tips for overcoming the functional limitations of eating with dentures, and unobtrusive healthier eating advice. Face validity with users confirmed acceptability. Conclusion A systematic and rigorous integration of scientific evidence, expert experience and patient input has developed a patient-centric, evidence-based approach to a patent leaflet on eating with dentures that, based on initial face validity, is likely to be well received

Patient and caregiver experiences of living with dementia in Tanzania

Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don't receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania. This study aimed to understand people with dementia, and their caregivers' experiences of living with dementia in Tanzania and the perceived needs of people with dementia.Methods: Qualitative, semi-structured interviews were conducted with 14 people with dementia and 12 caregivers in Moshi, Tanzania. Interviews were audio-recorded, translated, transcribed and analysed using a Framework Analysis approach.Results: Three sub-themes were identified within data describing the experience of 'Living with Dementia in Tanzania': 'Deteriorations in Health', 'Challenges to living with Dementia in Tanzanian Culture', and 'Lack of Support': people with dementia faced challenges due to social isolation, stigmatisation, and lack of caregiver knowledge on how best to provide support. Collectively, these impacted on both the physical and mental health of people with dementia. Misconceptions about dementia aetiology related to age, stresses of daily life and other co-morbidities. People with dementia were motivated to access treatment, exhibiting pluralistic health-seeking behaviours. There was an overall preference for non-pharmacological interventions over medication, with high levels of trust in medical professional opinions.Conclusions: Living with dementia in Tanzania is influenced by both cultural and religious factors. More work is needed to target supplementary healthcare (with efforts to promote accessibility), support for caregivers and public health education about dementia to overcome existent misconceptions and stigma