Emergency department staff priorities for improving palliative care provision for older people: A qualitative study.

BACKGROUND: Emergency department-based palliative care services are increasing, but research to develop these services rarely includes input from emergency clinicians, jeopardizing the effectiveness of subsequent palliative care interventions. AIM: To collaboratively identify with emergency clinicians' improvement priorities for emergency department-based palliative care for older people. DESIGN: This was one component of an experience-based co-design project, conducted using semi-structured interviews and feedback sessions. SETTING/PARTICIPANTS: In-depth interviews with 15 emergency clinicians (nurses and doctors) at a large teaching hospital emergency department in the United Kingdom exploring experiences of palliative care delivery for older people. A thematic analysis identified core challenges that were presented to 64 clinicians over five feedback sessions, validating interview findings, and identifying shared priorities for improving palliative care delivery. RESULTS: Eight challenges emerged: patient age; access to information; communication with patients, family members, and clinicians; understanding of palliative care; role uncertainty; complex systems and processes; time constraints; and limited training and education. Through feedback sessions, clinicians selected four challenges as improvement priorities: time constraints; communication and information; systems and processes; and understanding of palliative care. As resulting improvement plans evolved, "training and education" replaced "time constraints" as a priority. CONCLUSION: Clinician priorities for improving emergency department-based palliative care were identified through collaborative, iterative processes. Though generally aware of older palliative patients' needs, clinicians struggled to provide high-quality care due to a range of complex factors. Further research should identify whether priorities are shared across other emergency departments, and develop, implement, and evaluate strategies developed by clinicians.

Do those over 80 years of age seek more or less medical help? A qualitative study of health and illness beliefs and behaviour of the oldest old.

Increasing longevity and prevalence of long-term conditions contribute to older adults being the greatest users of health services. However, relatively little is known about the health and illness beliefs of the oldest old or how they decide to seek help in response to symptoms. Through analysis of in-depth interviews with day centre attendees aged 80-93, we find that a moral, hierarchical approach to health problems and help-seeking exists; similar to Cornwell's (1984) findings among 50-60 year-olds of a similar social group 30 years ago. However, when acting independently, those in their eighties and nineties report modifying their health and illness beliefs and behaviour, in response to their own perceived old age. Some health problems are 'demedicalised', being increasingly attributed to age and by being self-managed. Others are perceived as potentially more serious, leading to increased consultation with medical services. When obliged to act outside their moral belief-behaviour framework by others, the participants expressed feelings of disempowerment, yet resisted modifying their moral beliefs. This may represent resistance to adopt the 'sick role', while seeking to maintain control over uncertain health as functional dependence and frailty increases. This study furthers theoretical understanding of the health and illness beliefs and behaviour of the oldest old, with important practical implications.

Aging Well With a Lifelong Disability: A Scoping Review.

BACKGROUND AND OBJECTIVES: Existing literature highlights notable health and social inequalities for people aging with a lifelong disability and the need for research to better understand how we can support this group to age well. This scoping review mapped existing literature related to "aging well" in people with lifelong disabilities. RESEARCH DESIGN AND METHODS: Five scientific databases and gray literature sources were searched for studies related to "aging well" and "lifelong disability" (defined as a disability that a person had lived with since birth or early childhood). RESULTS: We identified 81 studies that discussed aging well with a lifelong disability, with most (70%) focusing on intellectual disabilities. Two themes captured existing research on aging well with a lifelong disability: (1) framing aging well with a lifelong disability, which included the ways that people with lifelong disability, their supporters, and existing research frame aging well for this group and (2) supporting people to age well with a lifelong disability, which involves the micro-, meso-, and macro-level factors where research suggests interventions to facilitate aging well could be situated. DISCUSSION AND IMPLICATIONS: This synthesis highlights how aging well is currently framed in the literature and where interventions to improve aging well in this group could be situated. Literature highlights the importance of considering multilevel interventions to improve aging well. Evidence gaps include the lack of research conducted with groups other than those with intellectual disabilities and the need for more research examining aging well interventions.

Co-construction of chronic illness narratives by older stroke survivors and their spouses.

Illness narratives have mainly focused on individual patients' accounts, and particularly those of people experiencing the onset of chronic illness in mid-life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75-85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co-presentation of identity were identified. The 'united couple' described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as 'positive', involving self-reliant couples who took pride in how they managed and 'frustrated' in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity.

The role of the clinical research nurse.

With increased emphasis on clinical research within the NHS, it is vital that training and educational opportunities are available to enable clinical research nurses to progress in their careers. This article describes the work of the clinical research nurse and examines the advantages and disadvantages of the role. It discusses the history of clinical research nursing and those aspects and guidelines that have shaped the way the role has developed. The lack of a career pathway for nurses who decide to pursue a career in nursing research and/or medical research is considered, and suggestions are made regarding the future of clinical research nursing and education.

Understanding the role of scars in adults' narratives of childhood liver transplantation: A sociological perspective.

For sociological and anthropological scholars alike, the body is both a physical and social entity as well as a project to be worked on by the self and by others (Tamari, 2020). However, scholars' conceptual work in organ transplantation and the body has tended to overlook the resultant surgical scars, yet these are borne by all transplantation recipients. For example, in understanding biomedicine's intervention in the body through the skin Shildrick (2008) uses the term 'corporeal cut' conceptually rather than focus on the flesh that is cut and the scar that subsequently forms. In this way body flesh has become abstract; cut but unmarked, with transplantation scars being an 'absent presence' in these disciplines' thinking. In this paper we attempt to develop a more nuanced understanding of how organ transplantation shapes both the corporeality of the body and the embodiment of the self through considering the concept of a transplant scar in three ways. First, through transplantation scars' dynamic physical appearance across their lifecourse and their symbolic meaning for their bearer. Second, how scars' coded messages are framed for 'stranger' audiences in the context of their little experience of organ transplantation; and third, through the scars' display and storytelling in the context of more intimate relationships. Interview data from 27 adult survivors of childhood liver transplantation, who bear either 'Lexus' or 'Mercedes' transplantation scars, are drawn upon to illustrate these concepts. Awareness of the meanings associated with the scar as well as others' reactions, imputed or not, to the physicality of the scar point to the significance of the body as a corporeal marker of personal narratives and negotiations. It also indicates the polysemic nature of the scarring and the way in which inventive narratives can play a positive as well as negative role in the lives of organ transplant recipients.

Corrigendum to Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study.

[This corrects the article DOI: 10.1016/j.ijnsa.2020.100016.].

Geriatricians' views of advance decisions and their use in clinical care in England: qualitative study.

BACKGROUND: an anticipatory decision document records a person's wishes regarding medical treatment at a time when they have capacity to make choices, to be enacted when this capacity is lost. In England and Wales an advance decision to refuse treatment (ADRT, or advance decision), a legally binding document, is currently rarely used. A disparity is suggested to exist between physicians' support for anticipatory decisions in principle and their lack of impact on decision-making in practice. OBJECTIVE: to elicit geriatricians' views on advance decisions and their use in decision-making in England. DESIGN: a qualitative approach was taken. Semi-structured interviews were conducted with 10 geriatricians. An inductive approach was used for data analysis. RESULTS: geriatricians held positive views on anticipatory decisions in principle. In practice, they reported being highly likely to follow a decision which was in line with their clinical view. They would also favour an ADRT which was prescriptive in terms of the situation and treatment to which it applied. However, geriatricians expressed concerns in relation to patient understanding of the role and limits of these documents. Participants expressed discomfort in following an ADRT which, in their professional opinion, did not represent the patient's best interests, despite it being a legally binding document. A conflict between doctors' beneficence and patients' autonomy was apparent, with geriatricians differing in their views on how ADRTs should fit into medical decision-making; particularly how far anticipatory decisions can represent ongoing patient autonomy. CONCLUSION: despite their status in law, an ADRT which conflicts with a geriatrician's clinical opinion may not be implemented, in breach of the Mental Capacity Act. To avoid this, they must be seated within wider advance care planning.

Capturing patient-reported and quality of life outcomes with use of shorter regimens for drug-resistant tuberculosis: mixed-methods substudy protocol, TB PRACTECAL-PRO.

INTRODUCTION: People living with multidrug-resistant tuberculosis currently have few options for effective treatment and cure. Regimens that are available are toxic, may involve injections and take up to 2 years to complete treatment, with success rates as low as 50%. The TB-PRACTECAL trial is evaluating shorter, more tolerable regimens of oral drugs; we detail the substudy within this trial, PRACTECAL-PRO, which aims to evaluate patient experiences and perspectives on treatment, to understand outcomes more fully. METHODS AND ANALYSIS: We are conducting a mixed-methods evaluation within both investigational and standard of care arms within the TB-PRACTECAL trial, using sequential quality of life (QoL) surveys and in-depth interviews. Data collection involves the Short Form 12 (SF-12) and St George's Respiratory Questionnaire (SGRQ), collected at up to four fixed timepoints, from baseline, to up to 12 months later. Healthy volunteers will be surveyed to establish locally relevant controls. We will also purposively sample participants for qualitative data collection and analysis, to provide rich explanation of QoL scores. The study will be implemented in all six TB-PRACTECAL study sites in Uzbekistan, South Africa and Belarus. QoL surveys will be scored and analysed according to SF-12 and SGRQ developers' manuals. Differences between scores at baseline and later timepoints will be evaluated as well as graphical exploration of group score trajectories of investigational and standard of care arms. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Médecins Sans Frontières Ethics Review Board. Local ethics approval has been obtained in Uzbekistan, Belarus and South Africa. Results of the substudy will be shared with local health authorities, the WHO and submitted for publication in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT03942354; Pre-results.

Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study.

Background: Older adults (>65 years) with palliative care needs are increasingly accessing the emergency department. Some interventions have been developed to improve the care provided, but the majority of research has focused on provider perspectives. Limited understanding of patient and family experiences and priorities means important needs may be overlooked. Objectives: To explore patient and family caregiver experiences and identify their improvement priorities for emergency department-based palliative care delivery. Design: A participatory action research design, experienced-based co-design, was adopted. Filmed and audio-recorded interviews and individual feedback sessions were used to capture patient data. Setting: An urban emergency department in the UK. Participants: Six patients aged ≥65 with palliative care needs and four family caregivers were recruited from the emergency department. Methods: Participants took part in individual or dyad audio-recorded or filmed interviews. Interview data were analyzed using thematic framework analysis. One-to-one feedback sessions with participants were used to validate findings and rank the themes to identify patient and family priorities for improvement. Results: The analysis identified five prominent themes that captured the patient and family experience of emergency department-based palliative care. 1) Systems and processes; 2) communication and information; 3) changing expectations (of what can be done for one's health on a personal and system level); 4) recommendations (for improving palliative care in the emergency department); and, 5) acknowledgement and validation (of the patient and family). All themes except 'recommendations' were selected as improvement priorities. Within the context of these improvement priorities, participants provided rich insights into their perceptions of care and identified small but significant actions that could be implemented to improve their experiences of palliative care in the emergency department. These included being offered a drink or phone call, being included in conversations about their care, and being kept informed of what was happening with their care. Conclusions: Older people with palliative care needs and their family caregivers were able to share their experiences and highlight improvement priorities for emergency department care using the experience-based co-design approach. Their experiences offer new perspectives, which can be used alongside emergency department and palliative care clinician perspectives to support service and outcome measure development in future emergency department-based palliative care. Tweetable abstract: #EBCD study shows older adults with #PalliativeCare needs value communication, compassion & inclusion in #SharedDecisionMaking in the #ED.

Can Fire and Rescue Services and the National Health Service work together to improve the safety and wellbeing of vulnerable older people? Design of a proof of concept study.

BACKGROUND: Older adults are at increased risk both of falling and of experiencing accidental domestic fire. In addition to advanced age, these adverse events share the risk factors of balance or mobility problems, cognitive impairment and socioeconomic deprivation. For both events, the consequences include significant injury and death, and considerable socioeconomic costs for the individual and informal carers, as well as for emergency services, health and social care agencies.Secondary prevention services for older people who have fallen or who are identifiable as being at high risk of falling include NHS Falls clinics, where a multidisciplinary team offers an individualised multifactorial targeted intervention including strength and balance exercise programmes, medication changes and home hazard modification. A similar preventative approach is employed by most Fire and Rescue Services who conduct Home Fire Safety Visits to assess and, if necessary, remedy domestic fire risk, fit free smoke alarms with instruction for use and maintenance, and plan an escape route. We propose that the similarity of population at risk, location, specific risk factors and the commonality of preventative approaches employed could offer net gains in terms of feasibility, effectiveness and acceptability if activities within these two preventative approaches were to be combined. METHODS/DESIGN: This prospective proof of concept study, currently being conducted in two London boroughs, (Southwark and Lambeth) aims to reduce the incidence of both fires and falls in community-dwelling older adults. It comprises two concurrent 12-month interventions: the integration of 1) fall risk assessments into the Brigade's Home Fire Safety Visit and 2) fire risk assessments into Falls services by inviting older clinic attendees to book a Visit. Our primary objective is to examine the feasibility and effectiveness of these interventions. Furthermore, we are evaluating their acceptability and value to key stakeholders and services users. DISCUSSION: If our approach proves feasible and the risk assessment is both effective and acceptable, we envisage advocating a partnership model of working more broadly to fire and rescue services and health services in Britain, such that effective integration of preventative services for older people becomes routine for an ageing population.

High impact actions: preventing falls and encouraging exercise.

This article, the second in a series on the NHS Institute for Innovation and Improvement's eight high impact actions, reviews the roles played by nurses and local organisations in preventing falls among older people through early intervention and the promotion of active lifestyles.

Threats to embodied well-being: An exploration of how disabled people negotiate barriers in hospital settings.

Taking a social model of disability approach, this article explores how disabled people negotiate barriers in the large, modern hospital settings typically found in complex healthcare systems. While there is evidence of intractable barriers in the United Kingdom's National Health Service, little is known about the actions disabled people take in the face of barriers and the immediate effects of doing so. Analysis of data from a qualitative study of disabled people's healthcare encounters is presented. This draws on the concept of threats to embodied well-being to understand how disabled people perceive barriers and the influence this perception has on barrier negotiation. It demonstrates that some barriers are unique to healthcare and that these place disabled people in situations where their well-being is threatened. Despite these situations being inherently disempowering, disabled people are forced to take whatever action they can to protect the embodied self. We theorise that barriers are created inadvertently by the design, organisation and healthcare practices characteristics of modern hospital settings. Effective barrier removal requires understanding not only their impact on disabled people's embodied well-being, but also the political, policy and social relations implicated in their creation.