Katherine Froggatt

Background Chronic obstructive pulmonary disease (COPD) is a life-limiting condition with palliative care needs. Despite increasing awareness about the role palliative care can play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The unpredictability of the disease progression and misconceptio...

Background: There is a need for instruments that can evaluate the psychosocial quality of dying in nursing homes. The aim of this study was to adapt and validate the Quality of Dying in Long-Term Care scale (QoD-LTC) to the Spanish context. Methods: Descriptive cross-sectional study. Fourteen nurses from 7 facilities in southern Spain assessed 1...

Background An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable h...

Objectives To pilot a complex intervention to support healthcare and improve early detection and treatment for common health conditions experienced by nursing home (NH) residents. Design Pilot cluster randomised controlled trial. Setting 14 NHs (7 intervention, 7 control) in London and West Yorkshire. Participants NH residents, their family care...

Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may...

Background Behaviours that challenge in dementia, often described and diagnosed as Behavioural Psychological Symptoms of Dementia (BPSD) are experienced by 75% of people living with dementia in care homes or hospital environments, with 43% of nurses and care providers reporting these behaviours as moderately or severely distressing to them. During...

The disease trajectory in chronic obstructive pulmonary disease (COPD) is characterised by a progressive decline in overall function, loss of independence and reduction of health-related quality of life. Although the symptom burden is high and care is often demanding, patients’ and informal carers’ experiences in living with advanced COPD are seldo...

Background: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences ma...

Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may...

Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may...

Background: Nursing home residents are often frail and most have complex healthcare needs. Hospitalisation is distressing to the person, their family and nursing home staff and costly for health services. Early detection of changes in residents’ health may reduce admissions. Our aim was to pilot a complex intervention with implementation support to...

Background: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the f...

Objectives This paper aims to investigate resident, facility and country characteristics associated with length of stay in long-term care facilities (LTCFs) across six European countries. Setting Data from a cross-sectional study of deceased residents, conducted in LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland. Participant...

Background The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim The aim of this study was to descr...

Objectives The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions i...

Background People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futil...

Background People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. Objectives To establish the feasibility and acceptability to staff and family of conducting a...

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challengin...

Importance High-quality evidence on how to improve palliative care in nursing homes is lacking. Objective To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. Design, Setting, and Participants A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 count...

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social ca...

Background: Some interventions are developed from practice, and implemented before evidence of effect is determined, or the intervention is fully specified. An example is Namaste Care, a multi-component intervention for people with advanced dementia, delivered in care home, community, hospital and hospice settings. This paper describes the develop...

Objective: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs). Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's v...

Abstract Background By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nat...

Background: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, f...

Background While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care pl...

Objective: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries. Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during...

Introduction Acute hospital admission is distressing for care home residents. Ambulatory care sensitive conditions, such as respiratory and urinary tract infections, are conditions that can cause unplanned hospital admission but may have been avoidable with timely detection and intervention in the community. The Better Health in Residents in Care H...

Background Nurses in inpatient palliative care are frequently exposed to death and dying in addition to common stressors found in other nursing practice. Resilience may mitigate against stress but remains ill-defined and under-researched in the specialist palliative care setting. Objective The aim of this systematic review was to understand resili...

Background: A number of studies have explored factors associated with resident length of stay in care homes; however the findings of these studies have not been synthesized. The aim of this paper is to provide a systematic review of factors associated with length of stay until death and the strength of evidence supporting each of these factors. M...

Although chronic obstructive pulmonary disease (COPD) is recognized as being a life-limiting condition with palliative care needs, palliative care provision is seldom implemented. The disease unpredictability, the misconceptions about palliative care being only for people with cancer, and only relevant in the last days of life, prevent a timely int...

Background Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory accoun...

PACE_supplementary_PallMed – Supplemental material for Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study

Introduction Many people living with advanced dementia live and die in nursing care homes. The quality of life, care and dying experienced by these people is variable. Namaste Care is a multisensory programme of care developed for people with advanced dementia. While there is emerging evidence that Namaste Care may be beneficial for people with dem...

Background: Nursing homes are among the most common places of death in many countries. Aim: To determine the quality of dying and end-of-life care of nursing home residents in six European countries. Design: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preced...

Background: Care homes provide personal care and support for older people who can no longer be supported in the community. As part of a larger study of integrated working between the NHS and care homes we asked older people how they accessed health care services. Our aim was to understand how older people resident in care homes access health servi...

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers' confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of...

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of 'historic' sexual offences, many of whom ar...

Aim To explore the experience and the preparedness of family carers in their caregiving role as best interest decision‐makers of a relative living with advanced dementia. Background The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nurs...

Background: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-e...

Background Clear intervention specification is important, but often absent or incomplete in study reports. Namaste Care is a complex intervention for people with advanced dementia, but is not well specified, can be implemented differently, with limited evidence of effect, nor understanding of its optimal delivery. Aims a) To develop a programme th...

Background: The predicted demographic changes internationally have implications for the nature of care that older people receive and place of care as they age. Healthcare policy now promotes the implementation of end-of-life care interventions to improve care delivery within different settings. The Gold Standards Framework in Care Homes (GSFCH) pr...

Background There is limited evidence on the impact of multi-component interventions to support the delivery of palliative care in care homes. In 2015, one hospice established an innovative ‘Hospice in Your Care Home’ team using a number of interventions: role modelling and working alongside staff, responses to urgent referrals, advance care plannin...

Background: Higher acuity of care at the time of admission to long-term care (LTC) is resulting in a shorter period to time of death, yet most LTC homes in Canada do not have formalized approaches to palliative care. Namaste Care is a palliative care approach specifically tailored to persons with advanced cognitive impairment who are living in LTC...

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance...

Reducing transitions from nursing homes to hospitals for residents with Ambulatory Care Sensitive (ACS) conditions is a government priority in the UK. ACS conditions are those, which if not actively managed in the community, can lead to unplanned or avoidable hospital admissions. Early identification of changes in residents’ health is essential to...

Aims and objectives: To explore family perspectives on their involvement in the timely detection of changes in their relatives' health in UK nursing homes. Background: Increasingly, policy attention is being paid to the need to reduce hospitalisations for conditions that, if detected and treated in time, could be managed in the community. We kno...

Background The provision of institutional long-term care for older people varies across Europe reflecting different models of health care delivery. Care for dying residents requires integration of palliative care into current care work, but little is known internationally of the different ways in which palliative care is being implemented in the ca...

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursin...

Background: Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative car...

Objectives Residents living and dying in long-term care (LTC) homes represent one of society’s most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality in their last months of life. This presentation will provide an overview of: (a) an in...

Objectives To report on the feasibility and acceptability of an ACP model for individuals living with dementia in a sample of care homes in the United Kingdom. Method As part of a cluster randomised controlled trial including 25 Care Homes, carers of residents living with dementia in 13 of these homes were exposed to an ACP intervention. This compr...

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge...

Background Little is known about the process of implementing new palliative care interventions within care homes. The European Commission-funded PACE research project is a cluster randomised controlled trial of the ‘PACE Steps to Success’ intervention. Aims To reflect on the experience of delivering facilitation for implementation of a palliative...

Introduction With more than 12,000 older prisoners in the UK, deaths in custody are increasing ,¹ as is the need for palliative care. The ‘Both sides of the fence’ study used action research methodology in one prison with a high population of older offenders. Interviews with staff and prisoners in Phase 1 provided the foundation for action cycles t...

Background: NH residents are often excluded from epidemiological studies, demonstrating a need for representative, internationally comparable research in this area. Data on palliative care provided by NHs is reported to the Care Quality Commission in England, but the quality of care is often locally determined. Aims: To review the challenges encoun...

Background: NH residents are often excluded from epidemiological studies, demonstrating a need for representative, internationally comparable research in this area. Data on palliative care provided by NHs is reported to the Care Quality Commission in England, but the quality of care is often locally determined. Aims: To review the challenges enco...

Background With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collab...