'We're like a gang, we stick together': Experiences of Ventricular Assist Device (VAD) communities

Background: VADs are relatively new developments in the management of advanced heart failure. In the UK, VAD recipients comprise a unique group of less than 200 patients. This is the first paper to explore the experience of VAD communities, the extent to which communities are developed around the device, and how these influence the experience of living with the VAD. Methods: Qualitative interviews were conducted with 20 VAD recipients (implanted as bridge to transplantation), 11 interviews also included the VAD recipients’ partners. Interpretive phenomenology was employed as the theoretical basis guiding the analysis of the interviews. Results: Four key themes emerged from the data: the existence of VAD communities; experiential knowledge and understanding; social comparisons; and the impacts of deaths within the VAD community. Many of the interviewees valued the VAD communities and the relationships they had formed with fellow recipients. Beneficial impacts of the VAD communities included offering recently implanted patients a realistic view of what to expect from life with a VAD, this could aid them in accepting and adapting to the changes imparted by the device. However, negative impacts of the VAD communities were also reported, in particular following deaths within the group which were a source of distress for many of the interviewees. Conclusions: In general, the VAD communities appeared to be a beneficial source of support for the majority of interviewees. Consideration should be given to how these communities could be supported by clinicians

Health visitors’ views on promoting oral health and supporting clients with dental health problems: a qualitative study

Background - Inequalities in dental decay in young children persist, resulting in high admission rates for general anaesthetics for tooth extractions. Health visitors have the potential to improve dental attendance and oral health in families least likely to engage with dental services. There is little evidence on health visitor views on this. Methods - Semi-structured interviews were conducted with a purposive sample of 17 health visitors working in both affluent and deprived areas in a single UK city. Interviews were audio recorded, transcribed, anonymized and analysed following a constructivist grounded theory approach. Results - Knowledge of oral health was high and health visitors requested oral health education specific to the communities they worked in. Health visitors reported effective, formal referral processes to other health services but not to primary NHS dental services even when dealing with infants in pain. Health visitors interviewed were largely unaware of specific NHS dental services which reduce barriers to dental care including interpreting services and dental services for children with additional needs. Conclusions - Health visitors interviewed were knowledgeable and enthusiastic about oral health but not about dental services. Inadequate links with NHS dental services may limit their effectiveness in oral health improvement and this needs to be addressed

Planning for tomorrow whilst living for today: the views of people with dementia and their families on Advance Care Planning

Background: Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia. Method: This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically. Results: People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare. Conclusions: Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia

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

Multidisciplinary team decision-making in cancer and the absent patient: a qualitative study

Objective To critically examine the process of multidisciplinary team (MDT) decision-making with a particular focus on patient involvement. Design Ethnographic study using direct non-participant observation of 35 MDT meetings and 37 MDT clinics, informal interviews and formal, semistructured interviews with 20 patients and 9 MDT staff members. Setting Three head and neck cancer centres in the north of England. Participants Patients with a diagnosis of new or recurrent head and neck cancer and staff members who attend the head and neck cancer MDT. Results Individual members of the MDT often have a clear view of which treatment they consider to be ‘best’ in any clinical situation. When disagreement occurs, the MDT has to manage how it presents this difference of opinion to the patient. First, this is because the MDT members recognise that the clinician selected to present the treatment choice to the patient may ‘frame’ their description of the treatment options to fit their own view of best. Second, many MDT members feel that any disagreement and difference of opinion in the MDT meeting should be concealed from the patient. This leads to much of the work of decision-making occurring in the MDT meeting, thus excluding the patient. MDT members seek to counteract this by introducing increasing amounts of information about the patient into the MDT meeting, thus creating an ‘evidential patient’. Often, only highly selected or very limited information of this type can be available or known and it can easily be selectively reported in order to steer the discussion in a particular direction

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice

Introducing high-cost health care to patients: dentists' accounts of offering dental implant treatment

Objectives: The decision-making process within health care has been widely researched, with shared decision-making, where both patients and clinicians share technical and personal information, often being cited as the ideal model. To date, much of this research has focused on systems where patients receive their care and treatment free at the point of contact (either in government-funded schemes or in insurance-based schemes). Oral health care often involves patients making direct payments for their care and treatment, and less is known about how this payment affects the decision-making process. It is clear that patient characteristics influence decision-making, but previous evidence suggests that clinicians may assume characteristics rather than eliciting them directly. The aim was to explore the influences on how dentists' engaged in the decision-making process surrounding a high-cost item of health care, dental implant treatments (DITs). Methods: A qualitative study using semi-structured interviews was undertaken using a purposive sample of primary care dentists (n = 25). Thematic analysis was undertaken to reveal emerging key themes. Results: There were differences in how dentists discussed and offered implants. Dentists made decisions about whether to offer implants based on business factors, professional and legal obligations and whether they perceived the patient to be motivated to have treatment and their ability to pay. There was evidence that assessment of these characteristics was often based on assumptions derived from elements such as the appearance of the patient, the state of the patient's mouth and demographic details. The data suggest that there is a conflict between three elements of acting as a healthcare professional: minimizing provision of unneeded treatment, trying to fully involve patients in shared decisions and acting as a business person with the potential for financial gain. Conclusions: It might be expected that in the context of a high-cost healthcare intervention for which patients pay the bill themselves, that decision-making would be closer to an informed than a paternalistic model. Our research suggests that paternalistic decision-making is still practised and is influenced by assumptions about patient characteristics. Better tools and training may be required to support clinicians in this area of practice

How does priority setting for resource allocation happen in commissioning dental services in a nationally led, regionally delivered system: a qualitative study using semistructured interviews with NHS England dental commissioners

Objectives: To understand approaches to priority setting for healthcare service resource allocation at an operational level in a nationally commissioned but regionally delivered service. Design: Qualitative study using semistructured interviews and a Framework analysis. Setting: National Health Service dentistry commissioning teams within subregional offices in England. Participants: All 31 individuals holding the relevant role (dental lead commissioner in subregional offices) were approached directly and from this 14 participants were recruited, with 12 interviews completed. Both male and female genders and all regions were represented in the final sample. Results: Three major themes arose. First, 'Methods of priority setting and barriers to explicit approaches' was a common theme, specifically identifying the main methods as: perpetuating historical allocations, pressure from politicians and clinicians and use of needs assessments while barriers were time and skill deficits, a lack of national guidance and an inflexible contracting arrangements stopping resource allocation. Second, 'Relationships with key stakeholders and advisors' were discussed, showing the important nature of relationships with clinical advisors but variation in the quality of these relationships was noted. Finally, 'Tensions between national and local responsibilities' were illustrated, where there was confusion about where power and autonomy lay. Conclusions: Commissioners recognised a need for resource allocation but relied on clinical advice and needs assessment in order to set priorities. More explicit priority setting was prevented by structure of the commissioning system and standard national contracts with providers. Further research is required to embed and simplify adoption of tools to aid priority setting

In Honor of Angela Harris: Finding Breathing Space, Embracing the Contradictions, and Education Work

In Honor of Angela Harris: Finding Breathing Space, Embracing the Contradictions, and “Education Work,” serves as a tribute to Angela Harris. This essay explores Harris’ concept of education work, the work that people of color in predominantly white settings must do to maintain their own integrity and to help their white colleagues to build inclusive communities. Part I explores this idea of education work and suggests that whites need to undertake part of the load of this work. Education work by whites provides an opportunity to create allies and to work across racial lines. Part II addresses the idea of incorporating mindfulness into legal education. Again, Harris has been a pioneer in this area through her scholarship on reframing legal education. The essay includes breathing exercises in the yoga tradition and concludes with a recipe for chocolate chip cake, recognizing Harris’ and my love of chocolate