Catherine E Walshe

• PhD
• Professor at Lancaster University

Background The North West Coast area of England (Lancashire, Merseyside, Cheshire and South Cumbria) has high palliative care need (third highest prevalence in England) and historically low recorded National Institute for Health and Care Research research activity (second lowest research recruitment rate in England). To stimulate research activity,...

Background: LGBT+ people are disproportionately at an increased risk for developing dementia. Dementia can compound the impact of stigma and social marginalisation experienced by LGBT+ people, and is likely to create barriers to accessing healthcare services. Understanding the needs, preferences, and experiences of LGBT+ people with dementia will h...

Introduction Connecting patients with healthcare providers by videoconferencing claims to extend the reach of palliative care by overcoming barriers of geographical distance and limited time, energy and financial resources. Research in this area has focused on physical aspects of care but little is known about circumstances leading to successful em...

Background: Namaste Care is an intervention designed to improve the quality of life for people with advanced dementia by providing individualised stimulation and personalised activities in a group setting. Current evidence indicates there may be benefits from this intervention, but there is a need to explore the practical realities of its implemen...

Background Health care staff should be given the opportunity to participate in research, but recruiting clinicians via their employing organisation is not always straightforward or quick in the UK. Unlike many countries outside the UK, very low-risk survey, interview or focus group studies can be subject to some of the same governance approval proc...

Objectives Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review’s conduct. The objective of...

Objective: To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods: Interpretative phenomenological analysis was the design of this study. Hospice healthcare workers from four pediatric hospices across Canada were recruited through purposive sampling....

Background Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics tha...

Background Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and org...

Qualitative data collection using online focus groups is increasing in popularity. However this may change the way discussion is created and steered by the participants and facilitators in these focus groups and so potentially influence the data collected. In a focus group study exploring end of life family conversations in African and Caribbean he...

Background Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after ra...

Background and objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care optio...

Background Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to...

Background Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on t...

Background Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims To explore how clinicians recruit to palliative care trials, why they choose...

Background Ethnic differences influence end-of-life health behaviours and usage of palliative care. Advance care planning is not widely utilised in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin e...

People with serious mental illness have higher morbidity and mortality rates compared with the general population. Mental health nurses are in an optimal position to address physical healthcare needs and inequalities experienced by this group. Research evidence suggests that mental health nurses may lack appropriate skills and confidence. The train...

Unlabelled: Paid staff and volunteers' experiences of working together to provide palliative care: a meta-ethnographic review CONTEXT: Volunteers in palliative care settings are an essential part of care provision for patients and those important to them. Effective collaboration between volunteers and paid staff has been regarded as an important e...

Background Caring for someone with moderate to advanced dementia within a domestic home setting can be burdensome and time-consuming. To ensure the effectiveness of care planning and delivery, especially towards the end of life, understanding the nature and impact of such caregiving on the family carer is important. Synthesising existing research w...

As people age, losses accumulate (ie, the death of family and friends, the loss of agility, and the loss of independence). Such losses have an impact on one's Sense of Coherence, that is, one's ability to see the world as comprehensible, manageable, and meaningful. Antonovsky deemed Sense of Coherence as a mostly stable state by the age of 30 years...

Objectives: Computer-mediated and telephone communication connecting professionals and patients (eHealth) is well established. Yet there is little information about psychosocial interventions delivered by trained practitioners for a palliative care population. The aim is to describe digitally enabled psychosocial interventions offered to adults wi...

Background: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. Methods: We consulted experts and followed consensus-based st...

Background: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives: to investigate whether...

Background Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim To understand the roles and deployment of volunteers...

Introduction Relying on written or spoken words, like questionnaires or interviews, has been criticised for not adequately communicating people’s complex multidimensional experiences. Cognitive and physical efforts needed, and palliative patients’ inherent anxieties in speaking with researchers, can limit the depth of data generated by verbal-only...

Introduction: Caring for someone with moderate to advanced dementia can be burdensome and time-consuming. Understanding the nature and impact of such family caregiving at home is important to plan effective care, especially towards the end of life. Synthesising existing research will allow greater insight into this experience. Aims: To understand...

Background: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in IC...

Background Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study...

Purpose Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries Materials and...

Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the...

Objectives To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. Methods We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical...

Context Evidence of symptom control outcomes in severe COVID is scant. Objective To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. Methods Multicentre cohort study of people with COVID across England and Wales supported by palliative care ser...

Objective In low- and middle-income countries, informal caregivers frequently stay in hospitals and perform patient care tasks typically performed by nurses in other contexts. This article reviews qualitative research on these informal caregivers, to gain insight and understanding of their experiences. Methods We undertook a qualitative meta-synth...

Abstracts from the 12th World Research Congress of the European Association for Palliative Care, Palliative Medicine 2022, Volume: 36 issue: 1_suppl, page(s): 3-122, https://doi.org/10.1177/02692163221093145

Abstracts from the 12th World Research Congress of the European Association for Palliative Care, Palliative Medicine 2022, Volume: 36 issue: 1_suppl, page(s): 3-122, https://doi.org/10.1177/02692163221093145

Background Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim To expl...

Objective To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting Organisations providing spec...

Introduction eHealth has accelerated with COVID-19. Studies indicate it benefits patients’ wellbeing and helps educate healthcare providers and families. Reviews highlight eHealth’s acceptability to service users, but with concerns that enthusiasm is overshadowing evidence of eHealth’s feasibility and effectiveness. Systematic reviews highlight a l...

Objectives: People with advanced chronic obstructive pulmonary disease (COPD) are frequently hospitalized, reporting high physical, psychological and spiritual suffering. Existing research focused on discrete aspects of hospitalization, such as care or treatment, yet lacks a complete picture of the phenomenon. The aim of this study is to understan...

Background Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim To understand rehabilitation provision in palliative c...

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face vali...

Narrative research methods invite people to share their experiences via storytelling. There is increasing interest as to how qualitative narrative inquiry can provide greater understanding into the lived experience around health and illness, particularly within the field of dementia. Narrative research is concerned with how humans make sense of and...

Background Understanding what makes a ‘good death’ in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death...

Objectives: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing sp...

Objectives To identify factors associated with palliative care services being busier during Covid-19. Methods Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (...

Background COVID-19 has placed huge stress on healthcare systems and services, often impacting the well-being of staff across all settings (Mehta, Machado, Kwizera, et al., 2021). Little is known about the pandemic’s impact on hospice staff. Aims Identify how responding to COVID-19 has impacted hospice staff, whether and why this resulted in exper...

Dementia caregiving is usually associated with negative experiences of the carer. For those looking after people with moderate to advanced dementia towards the end of life within a domestic home setting, these negative experiences may be described in relation to moral distress. In this study, moral distress is described as an experience at the poin...

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to i...

Hospital admissions are common for people with advanced chronic obstructive pulmonary disease (COPD). To provide effective, responsive care, it is important to understand how people experience hospitalization. The aim of this review was to explore the experience of hospitalization in people with advanced COPD, drawing from qualitative research data...

Background Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and...

Objectives To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. Methods Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ ² tests used to explore relationships between categorical variables....

Purpose Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients’ experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. Methods Using constructivist grounded theory with in-depth interviews patients (n = 15...

Background Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim Describe the challenges that UK specialist palliative care services experienced regarding advance care p...

Objective We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions abo...

Aim Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementi...

Background Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim To map and understand specialist palliative care services innovations and practice changes in respons...

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative...

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in voluntee...

The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The stu...

Context Systematic data on the care of people dying with COVID-19 are scarce. Objectives To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. Methods We surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logisti...

Context : Previous research has focused on the risks of stress, burnout and the impact on general emotional well-being in paid palliative care staff, however volunteers in patient-facing roles are exposed to similar stressors. Volunteers increasingly provide emotional support to patients and families but receive little formal support for themselves...

Background/aims Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be part...

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 Systematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic. Methods We surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with key chal...

Background Specialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care. Aim To map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall). Design Online su...

Background During the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. Aim To describe the challenge...

Abstract Title Exploration of the experiences of informal caregivers for people with a moderate to advanced dementia within a domestic home setting Authors Charles James, Catherine Walshe, Caroline Swarbrick Introduction In the UK, people who provide a home-based care for someone with a moderate to advanced dementia have reported a feeling of a...

Accelerometry data has been widely used to measure activity and the circadian rhythm of individuals across the health sciences, in particular with people with advanced dementia. Modern accelerometers can record continuous observations on a single individual for several days at a sampling frequency of the order of one hertz. Such rich and lengthy da...

Objective Practitioners are often reluctant to engage in conversations that acknowledge patient's health concerns. This can affect patient and family carer psychological well‐being. The Attitude to Health Change scales, adapted from the validated Adult Attitude to Grief scale, may have potential to address the psychological impact of illness and fa...

Background: Advanced cancer affects people's lives, often causing stress, anxiety and depression. Peer mentor interventions are used to address psychosocial concerns, but their outcomes and effect are not known. Our objective was to determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain p...

In this chapter the importance of disseminating your research so that it can create impact is addressed. Dissemination is an ethical and moral imperative where human subjects have given their time to contribute to research, but it is also a key factor in reducing future research waste, guiding further work, and shaping policy and practice. Here, we...

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...

District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encoun...

This preprint provides detailed methodology for calculating nonparametric measures such as IS, IV, Hurst exponent, and the proportion of variance explained by some ranges of frequency of power spectrum from the high frequency actigraphy data. This document is also available in arXiv (https://arxiv.org/abs/2005.01171).

Actigraphy data has been widely used to measure activity and the circadian rhythm of individuals across the health sciences, in particular with people with advanced dementia. Modern actigraph devices can record continuous observations on a single individual for several months at a sampling frequency of the order of one hertz. Such rich and lengthy...

Background Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. Aim The aim of this study was to understand the role and experience of hospital palliative care volunteers. Design Systematic review and narrative synthesis. Data sources CINAHL, Embase, Medline, PsycINFO...

Background Research is important internationally, impacting on health service provision and patient benefit. Journals play an important dissemination role, but there may be geographical bias, potentially affecting access to evidence. Aim To understand if there is a relationship between the continent of journals and that of contributing authors. D...

A social work advisory group recently proposed 41 generalist-level palliative social work activities applicable to any venue, including hospital-based social work, but this applicability has not been empirically tested. Therefore, we used critical realist grounded theory analysis of qualitative interviews to explore whether the activities proposed...

Context: Supplementary support services in palliative care for older people are increasingly common, but with no recommended tools to measure outcomes, nor reviews synthesising anticipated outcomes. Common clinically focussed tools may be less appropriate. Objective To identify stakeholder perceptions of key outcomes from supplementary palliative...

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...

Objective: To determine patterns of nurse-patient communication in fulfilling patients' informational/psychosocial needs, effects of longer consultation/operational aspects on person-centred care experiences. Methods: Mixed-method design; secondary analysis of transcripts of nurse-patient communication within nurse-led chemotherapy clinics in UK...

Peer mentors may offer distinctive forms of support to people with advanced cancer. Whilst peer mentor programmes are known, little is understood about recruiting and training peer mentors to support those with advanced cancer. The purpose of this study is to determine the feasibility of recruiting and training peer mentors for a novel peer mentor...