Karen Lowton

Only when I Cough? Adults’ Disclosure of Cystic Fibrosis

Cystic fibrosis has traditionally been conceptualized as a fatal childhood disease. In contrast, survival age has been increasing steadily such that adults now routinely seek to gain employment and form close relationships, situations that might require telling others about the disease. Here, the author examines three situations of disclosure based on interviews with 31 adults with the disease. First, in a low-risk situation, for example a short period of social contact, a low level of intimacy exists between the adult with cystic fibrosis and another. Here the disease may be concealed easily with little risk of discovery. Second, in a medium-risk situation, the perceived reaction of the other begins to influence the decision to disclose, as the level of intimacy becomes higher. Last, in high-risk situations, such as employment, the consequences of disclosing or concealing CF are most severe. However, a multiplicity of factors, including perceived social support and disease progression, are seen to influence adults’ decisions to disclose their disease.

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.

BackgroundOlder 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/DesignThis 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 Brigades 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.DiscussionIf 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.

Young people with cystic fibrosis' concerns for their future: When and how should concerns be addressed, and by whom?

Cystic fibrosis (CF) is the UK’s most common autosomal recessive genetic disorder, with historically few children surviving childhood. Better understanding of the disease has led to rapid improvements in treatment and care, with the majority of those affected now living into adulthood. Indeed, the current median survival age of 31 (UK Cystic Fibrosis database and CF Trust, 2006) is expected to rise to around 50 years for those born in the last decade (Dodge et al., 2007). Most adolescents with CF undergo developmental tasks common to all, such as entering further/higher education, commencing employment and developing intimate relationships, yet the salience of these is likely to be more acute for those with a limited lifespan. Adolescents with CF additionally face challenges such as disclosing their condition, the possibility of requiring organ transplantation, and accepting that they may be infertile. In response to CF patients’ care needs, transition services have been developed to bridge paediatric and adult services. All services are staffed by multidisciplinary team (MDT) members including medical consultants, specialist CF and general nurses, physiotherapists, dieticians and others, aiming to address young people’s physical health, mental wellbeing, and psychosocial concerns. However, the confidence or effectiveness of MDT members in addressing current and anticipated psychosocial issues relevant to adolescents and young adults with CF is unknown. We consequently evaluated two CF transition services (Lowton et al., 2005) to examine this issue.

Limited availability of cardiac rehabilitation for heart failure patients in the United Kingdom: findings from a national survey

Background Participation of patients with heart failure in cardiac rehabilitation in the UK is low. This study investigated the availability of cardiac rehabilitation services for patients with heart failure in the UK and the views of service coordinators on ideal service models. Design Our study was a cross-sectional national postal survey that was mailed to 342 service coordinators in the UK between April and June 2009. Methods We developed a 38-item questionnaire to survey all cardiac rehabilitation service coordinators on the National Audit of Cardiac Rehabilitation register in the UK in 2009. Results The survey response rate was 71% (244/342). Forty three per cent (105/244) of coordinators did not accept patients with heart failure to their cardiac rehabilitation services. Most coordinators who did accept patients with heart failure offered their services to patients with a variety of cardiac conditions, though referral criteria and models of care varied widely. Services inconsistently used New York Heart Association classes and left ventricular ejection fraction measures to select patients. Few offered separate dedicated heart failure programmes (14%; 33/244) but where these existed they ran for longer than programmes which included patients with heart failure alongside other cardiac patients (10.9 vs 8.5 weeks; F = 4.04; p = 0.019). Few offered home-based options for patients with heart failure (11%; 27/244). Coordinators accepting patients with heart failure to their cardiac rehabilitation services tended to agree that patients with heart failure should be included in services alongside other cardiac patients (χ2 = 6.2; p = 0.013). Conclusions There is limited access for patients with heart failure to cardiac rehabilitation in the UK. Local policies on referral and selection criteria differ and reflect coordinators’ views rather than clinical guidance.

Evaluation of transition services for young people with cystic fibrosis in Southeast London

We report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either Kings College Hospital (KCH) or University Hospital Lewisham (UHL).

Could Fire and Rescue Services identify older people at risk of falls

Protecting or improving the efficiency and effectiveness of services while reducing costs in response to public sector funding reductions is a significant challenge for all public service organisations. Preventing falls in older people is a major public health objective. We propose here an innovative model of community partnership with Fire and Rescue Services assisting falls prevention services to enhance the safety and well-being of older people in local communities through early identification of those who are at risk of injury from a fall or accidental domestic fire.

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.

Proceedings From the Symposium on Kidney Disease in Older People: Royal Society of Medicine, London, January 19, 2017

People are living longer. On the whole, they have healthier lives and many of the problems previously seen at a younger age now appear in their later years. Kidneys, like other organs, age, and kidney disease in the aged is a prime example. In the United Kingdom, as in other developed countries, the prevalence of end stage kidney disease is highest in the 70- to 79-year-old age group. There are many older people who require renal replacement and are now considered for dialysis. While older patients with end-stage renal disease invariably aspire for a better quality of life, this needs a specialized approach and management. In January 2017, the Royal Society of Medicine held a seminar in London on “Kidney Disease in Older People” with presentations from a multidisciplinary body of experts speaking on various aspects of kidney problems in this age group and its management. The objectives were to increase awareness and improve the understanding of nephrology in the context of geriatric medicine but also geriatrics in its interface with nephrology, especially in the area of chronic kidney disease.

008 PP: RESEARCHER-LED COLLABORATION BETWEEN PATIENTS AND CARERS, PALLIATIVE CARE AND EMERGENCY DEPARTMENT STAFF: AN EXPERIENCE-BASED CO-DESIGN PROJECT

Objective: Increased numbers of older people with palliative care needs accessing the Emergency Department (ED) has challenged traditional care delivery processes. A doctoral Experience-based Co-design (EBCD) study sought to understand and improve palliative care experiences for older patients, their families and staff in the ED. Setting: An academically-based research nurse conducted the study at a large, urban ED. Study Design: Fifteen audio-recorded interviews with ED staff and ten filmed interviews with patient and family members exploring ED experiences were analyzed thematically. Findings were validated and priorities selected for service improvements through (a) five staff workshops (64 ED staff), and (b) individual sessions with patient-family members. A subsequent co-design meeting attended by patient-family members, ED, palliative care and service improvement staff identified shared improvement priorities and planned change activities. Findings: Mid-research process the researcher identified gaps in care practices and initiated conversations between the ED and palliative care staff resulting in: 1) re-design of the referral processes, 2) implementation of mandatory annual training for ED staff, and 3) initiation of routine communication between ED and palliative care teams. The co-design meeting led to 1) routine provision of information about the ED for patients, and 2) on-going interdisciplinary collaborations to improve palliative care based on patient-family recommendations. An objective, external researcher was helpful when misunderstandings were evident between disciplines. Conclusion: EBCD provided a flexible framework for researcher-led, clinically-based collaborative research within a complex environment with vulnerable patients. ‘Co-design’ processes facilitated ownership and engagement with the research by ED staff and patient-family participants, additionally enabling inclusion of palliative care staff.

Reconceptualising Later Life: Using Qualitative Methods to Refine Understanding of New Ageing Populations

This chapter seeks to highlight our uncertainty over how far members of new ageing populations have the potential to become ‘everyday experimenters’ who exercise free choice in their lifestyles as they grow older, and to what extent these populations will age more through constraint; by living a life influenced by what health will allow and what mainstream society and its services offer in response. The chapter begins by examining the nature of the groups that make up the new ageing populations and the drivers behind their improving longevity and quality of life. In understanding where qualitative methods can begin to address some of the new research agendas for these populations, four key areas of enquiry are considered through a focus on adults with cystic fibrosis (CF, an inherited genetic condiion): how health and social care needs can be identified and met as individuals age; what the roles of family and friends might be in supporting individuals as they grow older; how far identity and social roles are shaped both by the underlying condition and society’s responses to it; and how the ‘older’ person of the future may not be classified usefully by chronological age. The chapter concludes by exploring how qualitative research can help understand these issues across the lifecourse of new ageing populations, and how often sensitive areas can be addressed in research practice.