Karen Lowton

University of Sussex · Department of Sociology

Background and Objectives Existing literature highlights notable health and social inequalities for people ageing 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 ‘ageing well’ in people with lifelong disabilities. Research...

INTRODUCTION The TB-PRACTECAL study trialed a shorter, more tolerable regimen of oral drugs than standard of care (SoC) – which can last for up to 20 months and involve both injectables and up to 20 tablets a day. In this sub-study, PRACTECAL-PRO, we measured and explored trial participant quality of life, experiences, and perspectives on treatment...

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 rec...

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 b...

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 drug...

Parents of children with complex conditions are often perceived by clinicians to experience difficulty in enabling their child to assume more independence in their care as they age into young adulthood. This chapter explores how best to understand and support parents to enable their child to become more able and confident to self-manage their illne...

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 th...

This chapter considers recruitment of couples to research and the ethics of gaining informed consent, before considering the more specific ethical issues that arise when couples are interviewed jointly, separately, or using both methods. The chapter concludes by considering the challenges of maintaining anonymity and confidentiality during data ana...

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...

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 depart...

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 academi...

This paper reports an ethnographic study examining health professional jurisdictions within three intensive care units (ICUs) in order to draw out the social processes through which ICU clinicians organised and delivered life-saving care to critically ill patients. Data collection consisted of 240 h observation of actual practice and 27 interviews...

Poster presenting a summary of outcomes from collaboration between emergency department (ED) and palliative care staff, and patients and their family caregivers to improve care for older, palliative patients and their family caregivers in the ED. This was an Experience-based Co-design project.

Background: Increasing use of emergency departments among older patients with palliative needs has led to the development of several service-level interventions intended to improve care quality. There is little evidence of patient and family involvement in developmental processes, and little is known about the experiences of - and preferences for...

Medical innovations have created a future of survivorship for many groups of people with a variety of conditions that were previously untreatable or untreated. This has led not only to an expansion of medical activity in a whole variety of new areas but also to the emergence of new groups of individuals defined or defining themselves through their...

SETTING: The joint Médecins Sans Frontières/Ministry of Health Multidrug-Resistant Tuberculosis (MDR-TB) Programme, Karakalpakstan, Uzbekistan. OBJECTIVE: Uzbekistan has high rates of MDR-TB. We aimed to understand patients' and prescribers' attitudes to anti-tuberculosis drug prescription, regulation and drug-taking behaviour. METHODS: Participant...

Autism is a lifelong neurodevelopmental disorder requiring various levels of social support across the life course. Early cohorts of children first diagnosed as having autism are now middle-aged or older. Needs for support and services, meaningful and accurate information, and acceptance are substantial among both families supporting a person with...

Purpose Uptake of cardiac rehabilitation services by older people is suboptimal. Offering suitable services may increase participation. This study investigated older heart failure patients’ preferences between hospital, community and home-based service models and sociodemographic and clinical factors associated with these preferences. Rates of refe...

The first paediatric liver transplants were performed in the early 1980s and continue today, saving thousands of children’s lives. Underlying syndromes, the transplant surgery, comorbidies and side effects of medication leave young people looking and feeling ‘different’ from their peers, especially in childhood. Through analysis of in-depth intervi...

The concept of a stable biographical narrative and its potential undermining by long term health conditions is one that underpins much medical sociology. This is particularly true of chronic illness rather than acute conditions constituting forms of biographical disruption. More recently, the influence of approaches derived from theories of reflexi...

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...

Background: Research has shown that the complex disabilities of autism persist across the life course (Hare et al., 2004). Adults with autism experience multiple challenges with communication, socialization, learning, self-help, independent living and adaptation to change (Happ and Charlton, 2012). Research has highlighted limitations in service...

Control of infection and prevention of healthcare associated infections is an ongoing issue worldwide. Yet despite initiatives and strategies to reduce the burden that these infections cause, healthcare workers’ practice is still reported as suboptimal and these infections persist. Much of the research to date has primarily focused on predicting in...

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 th...

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 olde...

Within policy and practice there is an increasing interest in the care of frail elders. However understanding of the experience and challenges of living and dying with frailty in older age is currently undeveloped. Frailty is often used as a synonym for the increasing infirmities that accompany ageing and the slow dwindling dying trajectory of many...

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 clin...

In developed nations, ‘later life’ is traditionally conceptualised as a time lived past a fixed retirement age, typically beginning in the seventh decade of the lifespan and lasting for around 20 years. As increased longevity continues, with cohorts experiencing better health through higher standards of living, a growing number of people are now li...

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 Res...

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...

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 socioe...

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.

The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about ho...

As populations age and chronic conditions become more prevalent, an individual's ability to choose the location of their end-of-life care and death is increasingly considered important in the provision of good healthcare, with home implied as the 'best' place of death through UK government policy and specialist and voluntary palliative care service...

Transition from Paediatric to Adult CareHealth Promotion, Health Maintenance and the Prevention of RelapseChronic Health Conditions and Care Requirements of Adults with Intellectual ImpairmentExperiencing Continuity of Care for A Chronic Health ProblemThe Importance of Multidisciplinary Team WorkingIssues Arising from Ageing Intellectually Impaired...

Health Needs and EmergenciesThe Patient Journey: ArrivalWhy is Improvement in Emergency and Urgent Health Care Provision Required?AssessmentThe Patient Journey — AssessmentSelf-Harm and Self-Injury — Primary Care Assessment and TreatmentPrimary Care ResponsibilitiesPatient JourneyConclusion References and Recommended Reading

Background: The increase in prevalence of long-term conditions in Western societies, with the subsequent need for non-acute quality patient healthcare, has brought the issue of collaboration between health professionals to the fore. Within primary care, it has been suggested that multidisciplinary teamworking is essential to develop an integrated...

The risk of infection for cystic fibrosis patients from Burkholderia cepacia complex pathogens is of increasing concern to doctors and scientists. This paper reports on how these patients perceive and manage the risk of cepacia infection using Douglas and Calvez's (199014. Douglas , M. and Calvez , M. 1990. The self as a risk taker: A cultural th...

To investigate the reasons women experience delays in the diagnosis of endometriosis and the impact of this. A qualitative interview-based study of 32 women, 28 of whom were subsequently diagnosed with endometriosis. Southeast England. Women attending a pelvic pain clinic. Semistructured interviews. Women's reported experiences of being diagnosed w...

There are both risks and benefits associated with diagnostic interventions, and they need to be accurately communicated to patients with chronic pelvic pain. Further research is needed to identify women’s understanding of the risks and benefits associated with diagnostic interventions and to determine whether this communication would improve patien...

"Expert patient" programmes have been introduced in the UK as a new approach to chronic disease management for the 21st century. The average survival age of those with cystic fibrosis (CF) has steadily increased such that the majority of those with the condition now live into adulthood. Currently, specialist CF centres deliver the core of medical c...

In the context of understanding motivations for clinical research participation, many authors consider issues such as informed consent and how patients perceive the research method and process. However, many investigations focus only on one method of research, most commonly the randomised controlled trial. Understanding how chronically ill members...

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 King's College Hospital (KCH) or University Hospital Lewisham (UHL).

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...

The ways in which teachers in British schools manage bereaved children are underreported. This article reports the impact of students' bereavement and their subsequent management in primary and secondary school classrooms in Southeast London. Thirteen school staff working in inner-city schools took part in in-depth interviews that focused on the im...

This paper focuses on how adults with cystic fibrosis (CF) attending a specialist CF centre in the UK perceive their health. In common with many other genetic diseases, CF is traditionally conceptualised as a fatal childhood disease, yet the average survival age for those with CF has been steadily rising over the past half century. Thus it is now p...

Medical sociologists have often considered lay perceptions of the risks of medical interventions, yet in many empirical studies respondents are people who are not likely to be exposed to a particular intervention. Furthermore, it has been well documented that risk perceptions may change over time and with diminishing health state. This paper explor...

Background. Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that famili...

The main purpose of pulse oximetry is to alert health-care professionals to the early stages of hypoxaemia. Pulse oximetry is an accurate and widely used method of monitoring peripheral saturation. As with any monitoring device, care must be taken to monitor the patient's vital signs. Pulse oximetry measures the saturation of arterial haemoglobin,...