scholarly journals Hospice patients’ participation in choice experiments to value supportive care outcomes

2018 ◽  
pp. bmjspcare-2018-001582
Author(s):  
Cara Bailey ◽  
Philip Kinghorn ◽  
Alistair Hewison ◽  
Christina Radcliffe ◽  
Terry Nicholas Flynn ◽  
...  
Keyword(s):  
Economic Evaluation ◽  
Supportive Care ◽  
End Of Life ◽  
Thematic Analysis ◽  
Task Difficulty ◽  
Qualitative Data ◽  
Best Worst Scaling ◽  
Hospice Patients ◽  
Care Outcomes ◽  
Care Measure

BackgroundValues used in economic evaluation are typically obtained from the general public, which is problematic when measures are to be used with people experiencing a life-course stage such as the end of life.ObjectiveTo assess the feasibility of obtaining values for the ICECAP-Supportive Care Measure (SCM) from patients receiving advanced supportive care through a hospice.MethodsParticipants completed eight best-worst scaling questions in a think-aloud interview to explain choices in different hypothetical end-of-life scenarios. Three independent raters identified errors in completion of the best-worst scaling task, and thematic analysis of associated qualitative data was undertaken to explore task difficulty and choices.ResultsTwelve hospice patients were recruited. Most were able to complete the task and prioritise aspects of supportive care with either no difficulty (n=50%) or difficulty in just one of the eight scenarios (n=25%). Two patients (n=17%) were unable to comprehend the hypothetical nature of the task. The qualitative data confirmed there was good engagement with the task and identified the importance the respondents attached to maintaining dignity.ConclusionThe findings suggest that people at the end of life will be able to complete a short, interviewer-administered, best-worst scaling task. To maximise engagement, it is recommended that the task is short and initiated with an example. Scenarios are best presented on show-cards in large print. A full evaluation of the ICECAP-SCM with those at the end of life is feasible.

scholarly journals Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life

2017 ◽  
Vol 189 ◽  
pp. 114-128 ◽  
Author(s):  
Elisabeth Huynh ◽  
Joanna Coast ◽  
John Rose ◽  
Philip Kinghorn ◽  
Terry Flynn
Keyword(s):  
Economic Evaluation ◽  
Supportive Care ◽  
End Of Life ◽  
Care Measure

scholarly journals Valuing end-of-life care: translation and content validation of the ICECAP-SCM measure

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Uta Gühne ◽  
Marie Dorow ◽  
Jessica Grothe ◽  
Janine Stein ◽  
Margrit Löbner ◽  
...  
Keyword(s):  
Supportive Care ◽  
End Of Life ◽  
Content Validity ◽  
End Of Life Care ◽  
Economic Evaluations ◽  
Life Care ◽  
Content Validation ◽  
The Uk ◽  
Care Measure

Abstract Background The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient’s wellbeing in terms of ‘capability’. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. Methods A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. Results The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. Conclusions The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.

On Euthanasia, Resistance, and Redemption

2011 ◽  
Vol 22 (2) ◽  
pp. 226-237 ◽  
Author(s):  
Alex Broom
Keyword(s):  
Supportive Care ◽  
End Of Life ◽  
Hospice Care ◽  
Moral Economy ◽  
Controversial Issues ◽  
Assisted Dying ◽  
Institutional Governance ◽  
Hospice Patients ◽  
Hastened Death

Euthanasia/assisted dying, the desire to hasten death, and religious supportive care at the end of life are controversial issues that have been heavily debated within the academic and medical communities. Little research has been done on hospice patients’ views, despite hospices being political spaces, espousing a range of perspectives on assisted dying, religiosity, and “good deaths.” In this article I document the presence, articulation, and significance of these issues as perceived and experienced by 20 hospice inpatients in the last 4 weeks of their lives. Key themes to emerge included polarization in desire for hastened death and assisted dying in the hospice; the hospice as a morally bound space situated within particular notions of “dying well”; and the divisive character of religion as part of formalized hospice care. Theoretically, the participants’ perspectives on euthanasia/assisted dying and religiosity in the hospice provide a means of unpacking and revealing the moral economy of modern dying practices and the institutional governance and production of “timely deaths.”

scholarly journals “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity

2020 ◽  
pp. 095935352093060
Author(s):  
Jennifer M Cole ◽  
Sarah Grogan ◽  
Emma Turley
Keyword(s):  
Chronic Pain ◽  
Social Relationships ◽  
Thematic Analysis ◽  
Online Survey ◽  
Qualitative Data ◽  
Physical Symptoms ◽  
Role Expectations ◽  
Social Connections ◽  
Women's Identity ◽  
Psychosocial Impacts

Endometriosis is a condition which affects around 1–2% of women worldwide and has profound effects on their everyday lives. Previous research has tended to focus on physical symptoms (such as chronic pain); how women manage changes to their identity and relationships as a result of endometriosis has received less attention. This paper discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations. We conducted thematic analysis of 34 replies to an online survey seeking qualitative text responses. The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves (Theme 1) and about reactions from medical and social connections prompting feelings that they were going “mad” (Theme 2). Participants also expressed feeling as though they were a burden to loved ones (Theme 3), which often resulted in self-silencing (Theme 4). Findings are discussed in the context of Western expectations of women’s roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.

scholarly journals Cigar-Smoking-Cessation Interest and Experience among Black Young Adults: A Semi-Structured In-Depth Interview Investigation

2021 ◽  
Vol 18 (14) ◽  
pp. 7309
Author(s):  
Aniruddh Ajith ◽  
Aaron Broun ◽  
Danielle A. Duarte ◽  
Bambi Jewett ◽  
Lilianna Phan ◽  
...  
Keyword(s):  
Smoking Cessation ◽  
Thematic Analysis ◽  
Financial Constraints ◽  
Qualitative Data ◽  
Smoking Prevalence ◽  
Healthcare Providers ◽  
Easy Access ◽  
Black African ◽  
Depth Interview ◽  
Cigar Smoking

Although Black/African American populations have high cigar-smoking prevalence, little is known about cigar-smoking cessation among this group. This study explored the perceptions and experiences of cigar-smoking cessation and assistance received from healthcare providers among forty Black young-adult cigar smokers (ages 21–29). Semi-structured in-depth phone interviews were transcribed and coded. Qualitative data were analyzed by using thematic analysis. Participants mostly smoked cigarillos, large cigars, and blunts. Overall, many regular cigarillo smokers reported interest in quitting eventually, while large-cigar and blunt smokers shared less interest in quitting because they perceived low harm from smoking these products. The reasons for cigar-smoking cessation were health concerns and financial constraints. Most of the participants who attempted to quit cigars did not use any cessation aids. The reasons for relapse included nicotine withdrawal, stress, and easy access. Additionally, most participants reported their healthcare providers did not ask whether they smoked cigars, and even when they knew, little assistance for cigar-smoking cessation was provided. Informing Black cigar smokers of the harm of cigar smoking and encouraging healthcare providers to screen for and assist with cigar-smoking cessation may alleviate the health burden of cigar smoking in this population.

Abstract 149: Care for Heart Failure Patients at the End of Life: Hospital Readmission and Mortality Amongst Heart Failure Patients Discharged to Hospice

2018 ◽  
Vol 11 (suppl_1) ◽  
Author(s):  
Haider J Warraich ◽  
Adam Devore ◽  
Haolin Xu ◽  
Roland Matsouaka ◽  
Paul Heidenreich ◽  
...  
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
Median Survival ◽  
Hospital Readmission ◽  
Discharge Rate ◽  
Care Plan ◽  
High Risk Population ◽  
White Race ◽  
Heart Failure Patients ◽  
Hospice Patients

Background: While 1 in 10 patients hospitalized with heart failure (HF) die within 30 days, end-of-life care for this high-risk population is not well described. Methods: We analyzed patients discharged alive from the Get With The Guidelines-HF registry between 2005-2014, linked to Medicare claims. We compared patients discharged to hospice to non-hospice “advanced HF” patients (ejection fraction ≤25% and either on inotropes, sodium ≤130, blood urea nitrogen ≥45 mg/dL, systolic blood pressure ≤90 mmHg or comfort measures) and to other GWTG-HF patients. Results: Of 121,990 US patients, hospice patients (n=4588, 2164 facility-based, 2424 home hospice) compared with advanced HF (n=4357) and others (113,045) were older (median age 86 years vs 78 years vs 81 years), more likely white race (88% vs 80% vs 82%), have intravenous loop diuretics used (74% vs 57% vs 63%), have an advanced care plan/surrogate decision maker discussed or documented (76% vs 62% vs 66%), had more dyspnea at rest (55% vs 46% vs 48%) and worse/unchanged symptoms at discharge (35% vs 2% vs 1%) (all p<0.01). Discharge to hospice increased from 2% (n=109) in 2005 to 5% (n=968) in 2014. Median survival in hospice was 11 days (25 th , 75 th percentile: 3, 65 days) compared with advanced HF (318 days) and others (754 days); 34% of patients discharged to a hospice facility and 12% to home hospice died in <3 days. (Figure) Median survival in hospice did not change significantly from 2005 to 2014. Hospital readmission at 30 days was 4% among hospice, 27% for advanced HF, and 22% for others. Median hospice discharge rate was 3.0 (0.7, 5.5). Hospice discharges had lower adjusted hazards of all-cause readmission (hospice compared with others: advanced HF odd ratio (OR) 0.15 (95% confidence interval (CI) 0.13-0.18), others OR 0.15 (95% CI 0.13-0.18). Hospice patients also had lower 6-month and 1-year readmission rate. Non-white race (OR 1.59 [95% CI 1.18-2.17]) and younger age (OR per 5 years 1.18 [95% CI 1.10-1.27)] were the strongest predictors of readmission from hospice. Conclusion: Hospice use in patients hospitalized with HF is limited but increasing. Few hospice patients are rehospitalized and almost a quarter die within 3 days of discharge. These findings may inform interventions to improve hospice care for HF patients.

Long COVID and breathlessness: an overview

2021 ◽  
Vol 26 (9) ◽  
pp. 438-443
Author(s):  
Patricia Robinson
Keyword(s):  
Supportive Care ◽  
End Of Life ◽  
Respiratory Symptoms ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Underlying Pathophysiology

This article offers a review of what is known so far about post-acute covid-19 and the underlying pathophysiology related to this condition. The main focus will be on the respiratory symptoms. It will then explore how community nurses can monitor and support patients with symptoms of breathlessness with a supporting discussion of the current recommendations for the management and treatment of patients presenting with symptoms of breathlessness. Palliation of symptoms will be highlighted but managing the supportive care needs for patients affected by COVID-19 and nearing the end of life is outside the scope of this article.

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