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Article ; Online: Examining how goals of care communication are conducted between doctors and patients with severe acute illness in hospital settings: A realist systematic review.

Gross, Jamie / Koffman, Jonathan

2024 Volume 19, Issue 3, Page(s) e0299933

Abstract: Background: Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care ... ...

Abstract	Background: Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care planning within hospitals remains limited, particularly where mismatches in shared understanding between doctors and patients are present. Aim: To identify and critically examine factors influencing goals of care conversations between doctors and patients during acute hospital illness. Design: Realist systematic review following the RAMESES standards. A protocol has been published in PROSPERO (CRD42021297410). The review utilised realist synthesis methodology, including a scoping literature search to generate initial theories, theory refinement through stakeholder consultation, and a systematic literature search to support program theory. Data sources: Data were collected from Medline, PubMed, Embase, CINAHL, PsychINFO, Scopus databases (1946 to 14 July 2023), citation tracking, and Google Scholar. Open-Grey was utilized to identify relevant grey literature. Studies were selected based on relevance and rigor to support theory development. Results: Our analysis included 52 papers, supporting seven context-mechanism-output (CMO) hypotheses. Findings suggest that shared doctor-patient understanding relies on doctors being confident, competent, and personable to foster trusting relationships with patients. Low doctor confidence often leads to avoidance of discussions. Moreover, information provided to patients is often inconsistent, biased, procedure-focused, and lacks personalisation. Acute illness, medical jargon, poor health literacy, and high emotional states further hinder patient understanding. Conclusions: Goals of care conversations in hospitals are nuanced and often suboptimal. To improve patient experiences and outcome of care interventions should be personalised and tailored to individual needs, emphasizing effective communication and trusting relationships among patients, families, doctors, and healthcare teams. Inclusion of caregivers and acknowledgment at the service level are crucial for achieving desired outcomes. Implications for policy, research, and clinical practice, including further training and skills development for doctors, are discussed.
MeSH term(s)	Humans ; Acute Disease ; Communication ; Hospitals ; Patient Care Planning ; Physicians
Language	English
Publishing date	2024-03-18
Publishing country	United States
Document type	Journal Article ; Systematic Review
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0299933
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.

Dehpour, Tara / Koffman, Jonathan

Aging & mental health

2022 Volume 27, Issue 1, Page(s) 110–123

Abstract: Objectives: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been ... ...

Abstract	Objectives: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia. Methods: MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. Results: 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. Conclusion: Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.
MeSH term(s)	Humans ; Caregivers ; Reproducibility of Results ; Psychometrics ; Dementia ; Grief
Language	English
Publishing date	2022-02-15
Publishing country	England
Document type	Systematic Review ; Journal Article
ZDB-ID	1474804-6
ISSN	1364-6915 ; 1360-7863
ISSN (online)	1364-6915
ISSN	1360-7863
DOI	10.1080/13607863.2022.2032599
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Article ; Online: Public Opinions About Palliative and End-of-Life Care During the COVID-19 Pandemic: Twitter-Based Content Analysis.

Wang, Yijun / Chukwusa, Emeka / Koffman, Jonathan / Curcin, Vasa

JMIR formative research

2023 Volume 7, Page(s) e44774

Abstract: Background: Palliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC ... ...

Abstract	Background: Palliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC during the pandemic. Given that social media have the potential to collect real-time public opinions, an analysis of this evidence is vital to guide future policy-making. Objective: This study aimed to use social media data to investigate real-time public opinions regarding PEoLC during the COVID-19 crisis and explore the impact of vaccination programs on public opinions about PEoLC. Methods: This Twitter-based study explored tweets across 3 English-speaking countries: the United States, the United Kingdom, and Canada. From October 2020 to March 2021, a total of 7951 PEoLC-related tweets with geographic tags were retrieved and identified from a large-scale COVID-19 Twitter data set through the Twitter application programming interface. Topic modeling realized through a pointwise mutual information-based co-occurrence network and Louvain modularity was used to examine latent topics across the 3 countries and across 2 time periods (pre- and postvaccination program periods). Results: Commonalities and regional differences among PEoLC topics in the United States, the United Kingdom, and Canada were identified specifically: cancer care and care facilities were of common interest to the public across the 3 countries during the pandemic; the public expressed positive attitudes toward the COVID-19 vaccine and highlighted the protection it affords to PEoLC professionals; and although Twitter users shared their personal experiences about PEoLC in the web-based community during the pandemic, this was more prominent in the United States and Canada. The implementation of the vaccination programs raised the profile of the vaccine discussion; however, this did not influence public opinions about PEoLC. Conclusions: Public opinions on Twitter reflected a need for enhanced PEoLC services during the COVID-19 pandemic. The insignificant impact of the vaccination program on public discussion on social media indicated that public concerns regarding PEoLC continued to persist even after the vaccination efforts. Insights gleaned from public opinions regarding PEoLC could provide some clues for policy makers on how to ensure high-quality PEoLC during public health emergencies. In this post-COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from web-based public discussion how to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media's potential in acting as an effective tool to reflect public opinions in the context of PEoLC.
Language	English
Publishing date	2023-08-07
Publishing country	Canada
Document type	Journal Article
ISSN	2561-326X
ISSN (online)	2561-326X
DOI	10.2196/44774
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Article ; Online: Enhancing equity and diversity in palliative care clinical practice, research and education.

Koffman, Jonathan / Shapiro, Gilla K / Schulz-Quach, Christian

BMC palliative care

2023 Volume 22, Issue 1, Page(s) 64

Abstract: Health disparities in palliative care are preventable consequences of structural discrimination and marginalization. The first step in addressing a problem is recognizing there is one and devotion to fully understanding its multifaceted nature. ... ...

Abstract	Health disparities in palliative care are preventable consequences of structural discrimination and marginalization. The first step in addressing a problem is recognizing there is one and devotion to fully understanding its multifaceted nature. Palliative care clinicians, educators and researchers must prioritize investigating and mitigating the effects of racial, social, and intersectional injustice.
MeSH term(s)	Humans ; Palliative Care ; Hospice and Palliative Care Nursing
Language	English
Publishing date	2023-06-05
Publishing country	England
Document type	Editorial
ZDB-ID	2091556-1
ISSN	1472-684X ; 1472-684X
ISSN (online)	1472-684X
ISSN	1472-684X
DOI	10.1186/s12904-023-01185-6
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Article ; Online: Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities.

Etkind, Simon N / Barclay, Stephen / Spathis, Anna / Hopkins, Sarah A / Bowers, Ben / Koffman, Jonathan

PloS one

2024 Volume 19, Issue 2, Page(s) e0289522

Abstract: Background: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding ... ...

Abstract	Background: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. Aim: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. Methods: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. Results: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. Conclusions: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.
MeSH term(s)	Humans ; Female ; Aged ; Middle Aged ; Male ; Consensus ; Uncertainty ; Research ; Research Personnel ; Communication
Language	English
Publishing date	2024-02-29
Publishing country	United States
Document type	Journal Article
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0289522
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Article ; Online: Social media for palliative and end-of-life care research: a systematic review.

Wang, Yijun / Koffman, Jonathan / Gao, Wei / Zhou, Yuxin / Chukwusa, Emeka / Curcin, Vasa

BMJ supportive & palliative care

2024

Abstract: Background: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to ... ...

Abstract	Background: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach. Methods: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications. Results: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed. Conclusions: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.
Language	English
Publishing date	2024-04-09
Publishing country	England
Document type	Journal Article
ISSN	2045-4368
ISSN (online)	2045-4368
DOI	10.1136/spcare-2023-004579
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Article ; Online: Synergistic Impact of the Symptom Cluster on Health-Related Quality of Life in Patients With Chronic Obstructive Pulmonary Disease: A Secondary Data Analysis.

Fei, Fei / Koffman, Jonathan / Zhang, Xiaohan / Gao, Wei

Clinical nursing research

2022 Volume 31, Issue 6, Page(s) 991–999

Abstract: This study aimed to quantify the synergistic impact of symptom clusters on health-related quality of life (HRQoL) among patients with chronic obstructive pulmonary disease (COPD). We conducted a secondary analysis of a cross-sectional data collected via ... ...

Abstract	This study aimed to quantify the synergistic impact of symptom clusters on health-related quality of life (HRQoL) among patients with chronic obstructive pulmonary disease (COPD). We conducted a secondary analysis of a cross-sectional data collected via convenience sampling from patients with COPD. Multiple linear regressions were used to quantify the relationships between symptom clusters and HRQoL. The sample included 106 COPD patients from whom three symptom clusters were identified comprising of dyspnea depression, anxiety-sleep, and depression-anxiety. Depression-anxiety (psychological symptom cluster) was significantly associated with poorer HRQoL (β = 13.88, 95% CI [7.94, 19.82]), while no significant associations were detected with HRQoL for either depression or anxiety alone (β = 6.66, 95% CI [-2.99, 16.31]; β = 7.29, 95% CI [-0.78, 15.35]). Assessment and early intervention led by nurses targeting the psychological symptom cluster may represent an initial approach to improve HRQoL. Understanding the phenomenon of symptom clusters that are present in patients with COPD provides a breakthrough insight to devise strategies for their management.
MeSH term(s)	Cross-Sectional Studies ; Data Analysis ; Humans ; Pulmonary Disease, Chronic Obstructive/complications ; Quality of Life/psychology ; Syndrome
Language	English
Publishing date	2022-04-01
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1146553-0
ISSN	1552-3799 ; 1054-7738
ISSN (online)	1552-3799
ISSN	1054-7738
DOI	10.1177/10547738221085765
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Article ; Online: What do we do with all the evidence for symptoms in palliative care?

Boland, Jason W / Koffman, Jonathan / Boland, Elaine G

Palliative medicine

2022 Volume 36, Issue 6, Page(s) 892–894

MeSH term(s)	Hospice and Palliative Care Nursing ; Humans ; Palliative Care
Language	English
Publishing date	2022-07-13
Publishing country	England
Document type	Editorial
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163221098005
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Article ; Online: Servicing multi-cultural needs at the end of life.

Koffman, Jonathan

Journal of renal care

2014 Volume 40 Suppl 1, Page(s) 6–15

Abstract: Ethnic and cultural diversity are widespread across the world, but there is growing concern that end-of-life care is not offering Black Asian and Minority Ethnic (BAME) groups the most appropriate services. This article explores the experiences of BAME ... ...

Abstract	Ethnic and cultural diversity are widespread across the world, but there is growing concern that end-of-life care is not offering Black Asian and Minority Ethnic (BAME) groups the most appropriate services. This article explores the experiences of BAME patients with advanced disease and the response of the healthcare professionals who care for them. Key questions include cultural influences on symptoms of advanced disease, communication and the role of religion and spirituality.
MeSH term(s)	Aged ; Comorbidity ; Cross-Cultural Comparison ; Cultural Competency/ethics ; Cultural Diversity ; Ethics, Nursing ; Hospice and Palliative Care Nursing/ethics ; Humans ; Kidney Failure, Chronic/ethnology ; Kidney Failure, Chronic/nursing ; Male ; Medical Futility/ethics ; Patient Rights/ethics ; Professional-Family Relations/ethics ; Renal Dialysis/ethics ; Renal Dialysis/nursing ; Terminal Care/ethics ; Trust ; United Kingdom ; Withholding Treatment/ethics
Language	English
Publishing date	2014-09
Publishing country	United States
Document type	Case Reports ; Journal Article ; Review
ZDB-ID	2375362-6
ISSN	1755-6686 ; 1755-6678 ; 1019-083X
ISSN (online)	1755-6686
ISSN	1755-6678 ; 1019-083X
DOI	10.1111/jorc.12087
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Article ; Online: Researching minoritised communities in palliative care: An agenda for change.

Koffman, Jonathan / Bajwah, Sabrina / Davies, Joanna M / Hussain, Jamilla Akhter

Palliative medicine

2022 Volume 37, Issue 4, Page(s) 530–542

Abstract: Background: Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and ... ...

Abstract	Background: Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and moral issues. Without the critical reflection of methods of study and reporting of findings, researchers may inadvertently compromise their contribution to reducing injustices and perpetuating racism. Aim: To examine key evidence of the place of minoritised communities in palliative care research to devise recommendations that improve the precision and rigour of research and reporting of findings. Methods: Narrative review of articles identified from PubMed, CINAHL and Google Scholar for 10 years augmented with supplementary searches. Results: We identified and appraised 109 relevant articles. Four main themes were identified (i) Lack of precision when working with a difference; (ii) 'black box epidemiology' and its presence in palliative care research; (iii) the inclusion of minoritised communities in palliative care research; and (iv) the potential to cause harm. All stymie opportunities to 'level up' health experiences and outcomes across the palliative care spectrum. Conclusions: Based on the findings of this review palliative care research must reflect on and justify the classification of minoritised communities, explore and understand intersectionality, optimise data quality, decolonise research teams and methods, and focus on reducing inequities to level up end-of-life care experiences and outcomes. Palliative care research must be forthright in explicitly indentifying instances of structural and systemic racism in palliative care research and engaging in non-judgemental debate on changes required.
MeSH term(s)	Humans ; Palliative Care/methods ; Hospice Care ; Terminal Care ; Hospice and Palliative Care Nursing ; Population Groups
Language	English
Publishing date	2022-10-21
Publishing country	England
Document type	Review ; Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163221132091
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