The Online Representation of Palliative Care by Practice, Policy, and Advocacy Organizations: Definitional Variations and Discursive Tensions

Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organizations. Discrepancies were found in the way palliative care was defined in relation to curative, end-of-life, terminal, and supportive care. Beyond these definitional variations, meaning was generated through the representation of palliative care as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of palliative care is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public.

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Conceptual Barriers to Palliative Care and Enlightenment From Chuang-tze’s Thoughts

Cambridge Quarterly of Healthcare Ethics ◽

10.1017/s0963180120000110 ◽

2020 ◽

Vol 29 (3) ◽

pp. 386-394

Author(s):

JUNXIANG LIU ◽

TIANYU ZHANG ◽

YIYAO LIAN ◽

FEI LI ◽

XIAOHONG NING

Keyword(s):

Palliative Care ◽

Filial Piety ◽

Death And Dying ◽

Biomedical Model ◽

Life And Death ◽

The Public ◽

Peace Of Mind ◽

Life Threatening Illness ◽

Life Threatening

AbstractThis paper claims that palliative care (PC) is a suitable approach for offering comprehensive support to patients with life-threatening illness and unavoidable asthenia, to enhance their quality of life in aging and chronic illness. There are however some conceptual barriers to accessing that care on the Chinese Mainland: (1) Death-denying culture and society; (2) Misguidance and malpractice derived from the biomedical model; (3) Prejudice against PC and certain deviant understandings of filial piety culture. To counter these obstacles, the study introduces the philosophy of Chinese Taoist Chuang-tze to enlighten the public from ignorance and remove some illusions about death and dying; inspire people to face and accept illness and death calmly, and keep harmony and inner peace of mind to alleviate suffering, with the aim of providing wisdom and a shift of attitude toward life and death. Chuang-tze’s thoughts are consistent with the provision of palliative care, and to a certain degree, can promote its acceptability and delivery, and the conception of good death in practice.

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Validation of the Spanish version of the QODD questionnaire (QODDq-ESP) in a home-based cancer palliative care program and development of the QODDq-ESP-12.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.70 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 70-70

Author(s):

Pedro Emilio Perez-Cruz ◽

Oslando Padilla Pérez ◽

Pilar Bonati ◽

Oliva Thomsen Parisi ◽

Laura Tupper Satt ◽

...

Keyword(s):

Palliative Care ◽

Convergent Validity ◽

Death And Dying ◽

Care Program ◽

Spanish Version ◽

Global Rating ◽

Care Clinic ◽

Phone Interview ◽

Quality Of Death

70 Background: Improving quality of death (QOD) is a key goal in palliative care. No instruments to measure QOD have been validated in Spanish. The goal of this study was to validate the Spanish version of the quality of death and dying questionnaire (QODD) and to develop a shortened version of this instrument suitable to be completed by phone interview. Methods: Translation/back-translation and adaptation of the QODD was performed following established standards. One question was removed due to cultural inadequacy. We enrolled caregivers (CGs) of consecutive deceased cancer patients from a single palliative care clinic in Santiago, Chile. CGs were contacted by phone between 4 and 12 weeks after patients’ death. Participating CGs completed the adapted QODD (QODD-ESP) by phone interview. A global rating question assessing quality of life (QOL) during the last week of life was included. A shortened version of the QODD (QODD-ESP-12) based on the model by Downey et al. (J Pain Sympt Manage 2010;39) was created. Measures of reliability (Cronbach-alpha), convergent validity (correlation with global rating question) and construct validity (factorial analysis [FA]) were estimated for both versions of the instrument. Results: 150 (50%) out of 302 CGs completed the QODD-ESP. Patients mean (standard deviation [SD]) age was 67 (14), 71 (47%) female and 131 (87%) died at home. CGs mean (SD) age was 51 (13), 128 (85%) female. Mean QODD-ESP score was 69 (range 35-96) with an alpha = .829. Correlation with last week QOL was .434 (p < .01). Kaiser-Meyer-Olkin measure of sampling adequacy was .585, not supporting the existence of a unique underlying construct. Mean QODD-ESP-12 score was 69 (range 31-97) with a alpha = .728. Correlation with last week QOL was .306 (p < .01). Confirmatory FA of QODD-ESP-12 showed that data fitted well Downey’s model (Chi2 4.85 (60), p = .311 Comparative Fit ndex = .98; Tuker-Lewis Index = .977 and root mean square error of approximation (RMSEA) = .023 (CI: 0-.056). Conclusions: QODD-ESP-12 is a reliable and valid instrument with good psychometric properties and can be used to assess QOD in a Spanish speaking cancer palliative care population by phone interview.

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Psychiatric liaison in palliative care

Advances in Psychiatric Treatment ◽

10.1192/apt.9.4.241 ◽

2003 ◽

Vol 9 (4) ◽

pp. 241-248 ◽

Cited By ~ 10

Author(s):

Simon Dein

Keyword(s):

Palliative Care ◽

Care Setting ◽

Depressive Illness ◽

Care Staff ◽

Cognitive Behavioural ◽

Palliative Care Setting ◽

Total Care ◽

Body Image Disturbances ◽

Illness Anxiety

Palliative care is the active, total care of patients whose disease is not responsive to curative treatment. Psychological problems such as depressive illness, anxiety, delirium, problems coping and body image disturbances are common in the palliative care setting, although they are often missed. A full assessment of these patients should take into account physical, emotional and spiritual factors; therapeutic work should include the patient's family. Pharmacological (antidepressants, anxiolytics and antipsychotics) and cognitive–behavioural treatments are often effective in allaying distress in this group of patients, and can improve coping skills and quality of life. Liaison psychiatrists have a role in teaching palliative care staff to recognise psychiatric disorders. A number of case studies are presented to illustrate these points.

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End-stage pulmonary disease

Emergencies in Respiratory Medicine ◽

10.1093/med/9780199202447.003.0016 ◽

2007 ◽

pp. 99-102

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Pulmonary Disease ◽

Physical Symptoms ◽

Curative Treatment ◽

Total Care ◽

End Stage ◽

Spiritual Problems

End-stage pulmonary disease 100 The WHO defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. The goal of palliative care is achievement of best quality of life for patients and their families. It includes control of pain and other physical symptoms as well as care of psychological, social and spiritual problems....

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Quality and Readability of Online Information Available for the General Public on Orofacial Granulomatosis

Journal of The Pakistan Dental Association ◽

10.25301/jpda.304.267 ◽

2021 ◽

Vol 30 (04) ◽

pp. 267-274

Author(s):

Zain Akram ◽

◽

Malik Adeel Anwar

Keyword(s):

Assessment Tool ◽

Selection Process ◽

Social Stigma ◽

The Internet ◽

Online Information ◽

Content Type ◽

The Public ◽

Orofacial Granulomatosis ◽

Cheilitis Granulomatosa

OBJECTIVE: Orofacial granulomatosis (OFG) is a relatively rare entity. The information pertaining to it is accessible to patients and care-givers on the internet in a scarce quantity. The aims of the current study were to evaluate quality, readability, understandability and actionability of information regarding the disease-orofacial granulomatosis-available to the public on the internet. The purpose of the study was to evaluate ease of access and understandability of language available for individuals affected by OFG. Although the incidence of the disease is very low in Pakistan, patients with symptoms of OFG rarely report to clinics due to social stigma. METHODOLOGY: A vivid selection process was chosen for the study. The study was conducted online on 'google scholar' website. Four different search terms were used 'ofg disease', 'orofacial granulomatosis', 'cheilitis granulomatosa' and 'Melkersson Rosenthal Syndrome' to seek information on orofacial granulomatosis. All of this was done during July, 2020 to October 2020. The first 100 results from each term were shortlisted and evaluated further. Exclusion criteria was used and several repetitive sites, non-functional links, sites containing content irrelevant to the search were excluded. This resulted in 58 websites relevant to the search that were then categorized according to affiliation, specialisation, content type as well as content presentation. Three grading assessments were utilized to assess the quality of this online information; the Journal of the American Medical Association (JAMA) benchmarks, the Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P) and the presence of Health on the Net (HON) seal. In order to assess the readability of the content in the websites, the Flesch Reading Ease Score (FRES) and Simple Measure of Gobbledygook (SMOG) were used. RESULTS: The overall quality of online information on orofacial granulomatosis is difficult to comprehend and act upon as assessed by the PEMAT. The HON seal was visible on only 5 (9%) websites. In terms of readability, only one (2%) website was fairly easy to read. CONCLUSIONS: The online information on orofacial granulomatosis is qualitatively poor and does not serve its purpose in true sense. There is a need to devise better, high quality online readable information for patients and the public to understand. KEY WORDS: Orofacial granulomatosis, cheilitis granulomatosa, PEMAT.

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Correction: Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study

PLoS ONE ◽

10.1371/journal.pone.0208564 ◽

2018 ◽

Vol 13 (11) ◽

pp. e0208564 ◽

Cited By ~ 1

Author(s):

Arianne Brinkman-Stoppelenburg ◽

Frederika E. Witkamp ◽

Lia van Zuylen ◽

Carin C. D. van der Rijt ◽

Agnes van der Heide

Keyword(s):

Palliative Care ◽

Prospective Study ◽

Death And Dying ◽

Secondary Analysis ◽

Palliative Care Team ◽

Care Team ◽

University Hospital ◽

Quality Of Death ◽

A Prospective Study

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Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan

BMC Palliative Care ◽

10.1186/s12904-021-00715-4 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Isabelle Schaefer ◽

Nicole Heneka ◽

Tim Luckett ◽

Meera R. Agar ◽

Suzanne K. Chambers ◽

...

Keyword(s):

Palliative Care ◽

Brain Cancer ◽

Online Resources ◽

Self Management ◽

Online Information ◽

Care Needs ◽

Environmental Scan ◽

Management Advice ◽

Google Search

Abstract Background A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. Method A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). Results A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. Conclusions More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required.

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