Irene J Higginson
Dados Biográficos
| ID | 206580 |
|---|---|
| NOME | Irene J Higginson |
| PRENOMES | Irene J |
| SOBRENOME | Higginson |
| ASSINATURA | HIGGINSON I J |
| AFILIAÇÕES | King's College London |
| ORCID | 0000-0002-3687-1313 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 37 |
| TOTAL DE CITAÇÕES | 46 |
| TOTAL COMO AUTOR | 37 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 1990 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 4 |
Evaluating the measurement properties of the Hindi Integrated Palliative Care Outcome Scale (Ipos) in advanced cancer patients receiving home-based palliative care in India
A culturally appropriate person-centred approach is needed in Indian palliative care settings to address the holistic concerns most distressing for patients with cancer. The study aimed to evaluate the measurement properties of the Hindi Integrated Palliative Outcome Scale (IPOS), a person-centred tool to assess the physical, emotional, and care-related concerns of patients living with serious illness in resource-limited settings.This validation …
Provision of palliative and end-of-life care in UK care homes during the Covid-19 pandemic
Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care hom…
How can we achieve person-centred care for people living with HIV/Aids? A qualitative interview study with healthcare professionals and patients in Ghana
Although person-centred care (PCC) has been identified as a means to achieve the 90-90-90 targets, limited research has considered PCC in low- or middle-income settings. We aimed to explore what constitutes PCC from the perspectives of PLWHA and healthcare professionals (HCP) in Ghana. We conducted 39 semi-structured qualitative interviews with PLWHA and HCP in two community clinics in Ghana, West Africa. Interviews were analysed deductively usin…
Phase II mixed methods’ feasibility cluster randomised controlled trial of a novel community-based enhanced care intervention to improve person-centred outcomes for people living with HIV in Ghana
Person-centred care (PCC) for people living with HIV (PLWH) is a global goal for WHO and the UNAIDS strategy. We aimed to develop a novel person-centred intervention for community providers, test the feasibility of participant recruitment and retention, intervention delivery and to establish acceptability. Findings from qualitative interviews with PLWH and healthcare professionals were mapped onto a PCC theory in an expert intervention developmen…
Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage
Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma
We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants…
Longitudinal validity and reliability of the Myeloma Patient Outcome Scale (MyPOS) was established using traditional, generalizability and Rasch psychometric methods
The MyPOS demonstrated good longitudinal measurement properties, with potential areas for revision being the Healthcare Support subscale and the rating scale. The new psychometric approaches should be used for testing validity of monitoring in clinical settings
Keep All Thee ‘Til the End”
St Christopher's Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher's Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were develope…
Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making …
Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART)
The HIV basic care package
An evidence-based basic care package (BCP) of seven interventions (Family testing, Cotrimoxazole, Condoms, Multivitamins, Access to safe water treatment, Isoniazid preventive therapy (IPT), and Insecticide-treated bednet) has been advocated to prevent infections among people with HIV in low-income settings. We examined the availability and receipt of the BCP in HIV outpatient clinics in Kenya and Uganda. A survey of 120 PEPFAR-funded facilities d…
The presence of CD4 counts for the management of HIV patients in East Africa
New WHO guidance stipulates six-monthly CD4 testing and treatment initiation at CD4 less than 350. This study aimed to determine the presence of CD4 results in patient records across five care facilities in Kenya, and to identify factors associated with the presence of CD4 count. This is a cross-sectional study of consecutive outpatients. Participants completed self-reported outcomes of demographics, and both physical and mental health dimensions…
Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa
Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers' primary stressors related to day-to-d…
Heterogeneity and changes in preferences for dying at home
OP70 Place of Cancer Deaths in England, 2001-2010
Background Place of death is an important quality indicator for end of life care. Understanding where patients with cancer die and what factors are associated with place of death is important for improving end of life care and has significant health care cost implications. There is, however, limited up-to-date evidence to guide practice. Methods This is a whole population-based observational study. All deaths with cancer as the underlying cause o…
PS43 What is Important to the Quality of Life of People with Multiple Myeloma? Implications for the Design Of Quality of Life Questionnaires
Background Multiple myeloma is an incurable cancer, although recent treatment advances have improved expected survival from months to years in some cases. Increasing survival has elevated the importance of understanding and measuring patients’ quality of life (QOL) in research and clinical settings. A number of QOL questionnaires exist for use in myeloma, yet there is a paucity of research to understand what issues are important to QOL from the p…
OP22 Projections of Healthcare Costs in the Last Year of life for Older Cancer Patients in European Union Member States (2008-2030)
Background Despite advances, cancer remains a major cause of pain, suffering and death. The highest incidence and mortality occurs in older people (≥65), and given demographic change the numbers are expected to rise in the coming years. This has financial consequences and key implications for service planning. We estimated the current and future cost of providing care for older cancer patients in the last year of life (LYOL) in the 27 European Un…
Multi-centred mixed-methods Pepfar HIV care & support public health evaluation
This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting
The experience of using the SeiqoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD)
Palliative care
I know he controls cancer
Do religious or spiritual beliefs influence bereavement? A systematic review
Background: Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. Aim: A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Methods: Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the …
Does the patient‐held record improve continuity and related outcomes in cancer care
Objectives To assess the effectiveness of the patient‐held record (PHR) in cancer care. Background Patients with cancer may receive care from different services resulting in gaps. A PHR could provide continuity and patient involvement in care. Search strategy Relevant literature was identified through five electronic databases (Medline, Embase, Cinahl, CCTR and CDSR) and hand searches. Inclusion criteria Patient‐held records in cancer care with t…
Factors influencing death at home in terminally ill patients with cancer
Living with motor neurone disease
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experien…
Are bereaved family members a valid proxy for a patient's assessment of dying
I know he controls cancer
Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa
Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers' primary stressors related to day-to-d…
Living with motor neurone disease
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experien…
Managing Bereavement in the Classroom
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 impact of bereaved children on the school and how teachers responded to these children.All respondents…
Predictors of family anxiety in the weeks before bereavement
Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making …
Fit to care? A comparison of informal caregivers of first-generation Black Caribbeans and White dependants with advanced progressive disease in the UK
The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing Whi…
Assessing structure, process and outcome in palliative day care
Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was…
Research degree supervision
Assessing the symptoms, anxiety and practical needs of HIV/Aids patients receiving palliative care
Palliative care for people with HIV/Aids
This study compared the views of palliative care reported by patients, informal carers and the Community Care Team (CCT), a multidisciplinary team caring for people with late stage HIV/AIDS illness. Patients and their carers were interviewed at home, 3-4 weeks after referral to CCT. They rated nine items of the Support Team Assessment Schedule (STAS), a standardized measure of palliative care. Items included current problems such as pain and symp…
Audit in palliative care
Are bereaved family members a valid proxy for a patient's assessment of dying
Two HIV/Aids community support teams
Following the debate over the role and funding of specialist HIV/AIDS services there has been a call for more information about the needs of people with advanced HIV/AIDS and the processes and outcomes of care. This study describes the characteristics and problems of patients referred to two HIV/AIDS community teams in central London: Home Support Team (HST) and Community Care Team (CCT). Data was collected prospectively for consecutive referrals…
Predictors of family anxiety in the weeks before bereavement
Assessing structure, process and outcome in palliative day care
Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was…
Using quality of life measures in the clinical setting
This is the second in a series of five articles In modern medicine the traditional way of assessing change in patients has been to focus on laboratory or clinical tests. At its most simple this involves measuring pulse, blood pressure, and temperature, and carrying out physical examinations. At more complex levels it may include haematological analysis, computed tomography, radiography, organ function tests, genetic analysis, and other investigat…
Current HIV/Aids end-of-life care in sub-Saharan Africa
The interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals
Fit to care? A comparison of informal caregivers of first-generation Black Caribbeans and White dependants with advanced progressive disease in the UK
The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing Whi…
Managing Bereavement in the Classroom
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 impact of bereaved children on the school and how teachers responded to these children.All respondents…
Living with motor neurone disease
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experien…
Factors influencing death at home in terminally ill patients with cancer
Do religious or spiritual beliefs influence bereavement? A systematic review
Background: Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. Aim: A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Methods: Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the …
Does the patient‐held record improve continuity and related outcomes in cancer care
Objectives To assess the effectiveness of the patient‐held record (PHR) in cancer care. Background Patients with cancer may receive care from different services resulting in gaps. A PHR could provide continuity and patient involvement in care. Search strategy Relevant literature was identified through five electronic databases (Medline, Embase, Cinahl, CCTR and CDSR) and hand searches. Inclusion criteria Patient‐held records in cancer care with t…
I know he controls cancer
Palliative care
Multi-centred mixed-methods Pepfar HIV care & support public health evaluation
This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting
The experience of using the SeiqoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD)
OP70 Place of Cancer Deaths in England, 2001-2010
Background Place of death is an important quality indicator for end of life care. Understanding where patients with cancer die and what factors are associated with place of death is important for improving end of life care and has significant health care cost implications. There is, however, limited up-to-date evidence to guide practice. Methods This is a whole population-based observational study. All deaths with cancer as the underlying cause o…
PS43 What is Important to the Quality of Life of People with Multiple Myeloma? Implications for the Design Of Quality of Life Questionnaires
Background Multiple myeloma is an incurable cancer, although recent treatment advances have improved expected survival from months to years in some cases. Increasing survival has elevated the importance of understanding and measuring patients’ quality of life (QOL) in research and clinical settings. A number of QOL questionnaires exist for use in myeloma, yet there is a paucity of research to understand what issues are important to QOL from the p…
OP22 Projections of Healthcare Costs in the Last Year of life for Older Cancer Patients in European Union Member States (2008-2030)
Background Despite advances, cancer remains a major cause of pain, suffering and death. The highest incidence and mortality occurs in older people (≥65), and given demographic change the numbers are expected to rise in the coming years. This has financial consequences and key implications for service planning. We estimated the current and future cost of providing care for older cancer patients in the last year of life (LYOL) in the 27 European Un…
Heterogeneity and changes in preferences for dying at home
Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART)
Medicine (30 obras) · Nursing (23 obras) · Palliative Care and End-of-Life Issues (19 obras) · Palliative care (17 obras) · Family medicine (14 obras) · Psychology (14 obras) · HIV/AIDS Research and Interventions (10 obras) · Health care (8 obras) · Internal Medicine (8 obras) · Psychiatry (8 obras)