scholarly journals Examining the Range and Scope of Artists’ Professional Practices With Individuals With Palliative Care Needs: An International, Cross-Sectional Online Survey

2021 ◽  
Vol 12 ◽  
Author(s):  
Jenny Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Research Policy ◽  
Well Being ◽  
Professional Practices ◽  
Future Research ◽  
Care Needs ◽  
Cross Sectional ◽  
Wide Range ◽  
Palliative Care Needs

Background: Internationally, it is recognized that artists facilitate arts engagement with individuals with palliative care needs. There is a gap in the literature describing the range and scope of artists’ professional practices in palliative care. The aim of this study was to examine an international range of professional practices among artists who work in palliative care including key professionals’ perceptions of these practices.Methods: An international, cross-sectional, online survey was conducted with health professionals, artists, and program coordinators with experience with artists working in palliative care. This survey was part of a larger mixed methods study. An instrument was systematically developed to examine artists’ professional practices. Descriptive statistics were reported for the total sample including frequencies, means and standard deviations and open-ended items were analyzed thematically.Results: 101 valid surveys were analyzed. Findings outlined: (1) who delivers the arts; (2) where and with whom; (3) practice descriptors; and (4) perceptions of practice. Themes identified from open-ended items on benefits and risks of practice revealed impacts on patients and artists alike, including: (1) enhanced well-being; (2) vulnerabilities; and (3) facilitators and barriers.Conclusion: Findings demonstrated a wide range of artists’ practices in palliative and end-of-life care, featuring notable consistencies in international practice worth further exploration. Ongoing and international efforts examining artists’ practices in palliative care contribute to the development of future research, policy and practice.

scholarly journals EXPERIENCE OF LGBT PATIENTS AND FAMILY WITH HOSPICE AND PALLIATIVE CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S623-S624
Author(s):  
Gary L Stein ◽  
Cathy Berkman
Keyword(s):  
Palliative Care ◽  
Staff Training ◽  
Online Survey ◽  
Research Policy ◽  
Cross Sectional Study ◽  
Care Staff ◽  
Future Research ◽  
Policy And Practice ◽  
Cross Sectional ◽  
Hospice And Palliative Care

Abstract This study examines the degree to which hospice and palliative care staff observe or perceive inadequate, disrespectful, or abusive care to LGBT patients and family members. A cross-sectional study using an online survey completed by 865 providers, including social workers, physicians, nurses, and chaplains. Among respondents, 55% reported that LGB patients were more likely to experience discrimination at their institution than non-LGB patients; 24% observed discriminatory care; 65% reported that transgender patients were more likely than non-transgender patients to experience discrimination; 20% observed discrimination to transgender patients; 14% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 13% observed the spouse/partner being treated disrespectfully. Findings reported also include: institutional non-discrimination policy, staff training, intake procedures, and comfort in assessing LGBT status. Implications for future research, policy, and practice will be presented.

scholarly journals Palliative care needs of patients with multiple sclerosis in southeast Iran

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Fatemeh Dadsetan ◽  
Parvin Mangolian Shahrbabaki ◽  
Moghadameh Mirzai ◽  
Esmat Nouhi
Keyword(s):  
Multiple Sclerosis ◽  
Palliative Care ◽  
Pearson Correlation ◽  
Well Being ◽  
Teaching Hospitals ◽  
Care Needs ◽  
Cross Sectional ◽  
Significant Difference ◽  
Points Of View ◽  
Palliative Care Needs

Abstract Background Due to the chronic nature of multiple sclerosis, palliative care can play a significant role in improving the quality of life and well-being of the affected patients. An essential step for developing appropriate palliative care for these patients is to determine the types of palliative care necessary, from different points of view. Therefore, this study was conducted to compare the palliative care needs from the nurses’ and patients’ points of view in southeast Iran in 2017. Method This descriptive-analytical cross-sectional study was conducted on 154 nurses working in neurology wards of teaching hospitals associated with Kerman University of Medical Sciences and 132 patients with multiple sclerosis who were referred to these hospitals in southeast Iran. The data were collected using a questionnaire for assessing the palliative care needs of patients with multiple sclerosis. Pearson correlation coefficient, independent t-test, ANOVA, chi-square, and the Mann-Whitney and Kruskal-Wallis tests were used to examine the data. Results Both nurses and patients mentioned the palliative needs of patients with multiple sclerosis in terms of physical, social, spiritual, psychological, and economic dimensions, respectively, but the results showed that there was a significant difference between the two groups in all dimensions of palliative needs (P < 0.0001). Conclusion Given the differences in how patients and nurses prioritize palliative care needs, it is essential to consider the different dimensions of palliative needs of patients with multiple sclerosis.

scholarly journals Where do general practitioners find patients with possible palliative care needs?

BJGP Open ◽  
2020 ◽  
pp. BJGPO.2020.0100
Author(s):  
Bert Leysen ◽  
Bart Van den Eynden ◽  
Johan Wens
Keyword(s):  
Palliative Care ◽  
General Practitioners ◽  
Screening Tools ◽  
Future Research ◽  
Care Needs ◽  
Summary Table ◽  
Cross Sectional ◽  
Early Palliative Care ◽  
Family Practices ◽  
Palliative Care Needs

Background: For general practitioners (GPs) to implement early palliative care, the first step is to identify patients with palliative care needs, e.g. with a no-response to the Surprise Question (SQ) (not surprised if a patient would die within a year). Aim: To describe setting-specific screening results of patients eligible for early palliative care in family practices, here defined as patients aged 45 years with a GPs’ no-answer to the SQ. Design and setting: Secondary analysis. Cross-sectional descriptive study in family practices in 5 Belgian areas. Methods: GPs were recruited by targeted sampling. As a first part of an implementation research project, participating GPs provided demographic information about themselves and also provided a response to the SQ for all patients who came to the practice in ten consecutive office days. A summary table describing the gender, age, location of contact (surgery, patient’s home, or nursing home) of the patients was provided by each GP. Results: 56 GPs provided complete data for the practice summary tables. In total 9,150 patients were described (all ages, all settings), of which 506 patients (6%) had a SQ-no-as-answer. The distribution of SQ-no-as-answer patients per setting was 152/7659 (2%) patients seen in family practice surgeries, 139/998 (14%) patients seen in their homes, and 215/493 (44%) patients seen innursing homes. Conclusions: There was quite a large number of SQ-no-as-answer patients, with possible palliative care needs. To enhance implementation of early palliative care, future research should compare results of SQ and other screening tools with palliative care symptoms assessments.

scholarly journals A New Approach to the Identification of Palliative Care Needs and Advanced Chronic Patients among Nursing Home Residents

2021 ◽  
Vol 18 (6) ◽  
pp. 3171
Author(s):  
Ana A. Esteban-Burgos ◽  
María José Lozano-Terrón ◽  
Daniel Puente-Fernandez ◽  
César Hueso-Montoro ◽  
Rafael Montoya-Juárez ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
Statistical Significance ◽  
Nursing Home Residents ◽  
Cross Sectional Study ◽  
Care Needs ◽  
Chronic Patients ◽  
Cross Sectional ◽  
Surprise Question ◽  
Palliative Care Needs

Background: Proper planning of Palliative Care in nursing homes requires advanced knowledge of the care needs that residents show. The aim of the study was to evaluate Palliative Needs and other conditions such as fragility, complexity, and prognosis and also to suggest new indicators for the establishment of the resident’s advanced chronic condition. Methods: Cross-sectional study conducted in 149 nursing homes Complex Chronic residents evaluated by trained professionals. Palliative Care Needs, assessed by the NECPAL ICO-CCOMS© tool, and fragility, case and palliative complexity and prognosis were evaluate through a comprehensive assessment. Descriptive analyses and association measures were performed setting the statistical significance at 0.05. Results: More than 50% of the residents had positive Surprise Question and other Palliative Needs and were classified as Advanced Chronic Patients. Distress and/or Severe Adaptative Disorder was the most frequent need shown by the residents and significant differences in levels of frailty and other characteristics, were found between the Positive and the Negative Surprise Question Groups. Statistically significant correlations were also found between aspects of both groups. Conclusions: Nursing homes residents show Palliative Needs regardless of the response to the Surprise Question of the NECPAL tool. Other characteristics such as presence of an intermediate level of frailty are suggested as a new perspective to identify advanced chronic patients among nursing homes residents.

Translation, cultural adaptation, and validation of the mindful self-care scale among Brazilian palliative care providers

2021 ◽  
pp. 1-7
Author(s):  
Ana Cláudia Mesquita Garcia ◽  
Laura Soares Rodrigues Silva ◽  
Ana Cristina Gonçalves Ferreira ◽  
Vander Monteiro da Conceição ◽  
Everson Meireles ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cultural Adaptation ◽  
Self Care ◽  
Well Being ◽  
Future Research ◽  
Care Providers ◽  
Cross Sectional ◽  
Reliability Indices ◽  
Self Compassion ◽  
Hospice And Palliative Care

Abstract Objective This study aimed to translate, culturally adapt, and validate the Mindful Self-Care Scale (MSCS, 33-item) in a Brazilian hospice and palliative care context. Method This was a cross-sectional study with a sample of 336 Brazilian hospice and palliative care providers. The European Organisation for Research and Treatment of Cancer — Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation process. Psychometric properties supporting the use of the MSCS were examined through confirmatory factor analysis (CFA) and correlation analysis with other instruments to assess congruence to related constructs (resilience and self-compassion). The reliability of the Brazilian-Portuguese version of the MSCS was assessed using Cronbach's α and composite reliability coefficients. Results The six-factor (33-item) model showed a good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. Further validity is evidenced in the significant, positive correlations found between the MSCS, and similar well-being constructs, namely the Self-Compassion and Resilience scales. Significance of results The findings reveal that the MSCS (33-item) is a valid, reliable, and culturally appropriate instrument to examine the practice of mindful self-care by hospice and palliative care providers in Brazil. More broadly, it represents a promising instrument for future research into self-care practices and well-being among Brazilian healthcare providers.

scholarly journals The Role of Palliative Care in Oncology

2017 ◽  
Vol 34 (04) ◽  
pp. 307-312 ◽  
Author(s):  
Rajiv Agarwal ◽  
Andrew Epstein
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Well Being ◽  
Care Needs ◽  
Patients With Cancer ◽  
Living With Cancer ◽  
Palliative Care Needs ◽  
Shed Light

AbstractPalliative care is a powerful adjunct to oncology that adds distinct value to the physical, mental, and psychosocial well-being of patients living with cancer. Its expanding role and integration with standard oncologic care has proven clinical benefit, as the practice of palliative care can help alleviate symptom burden, enhance illness and prognostic understanding, and improve both the quality of life and overall survival for patients. The primary aim of this review article is to highlight the significant interplay between palliative care and oncology and, in doing so, shed light on the areas for improvement and modern challenges that exist to meet the complex palliative care needs of patients with cancer.

scholarly journals Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: An integrative review

2020 ◽  
Vol 18 (6) ◽  
pp. 722-740 ◽  
Author(s):  
Annika Söderman ◽  
Ulrika Östlund ◽  
Carina Werkander Harstäde ◽  
Karin Blomberg
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Integrative Review ◽  
Future Research ◽  
Healthcare Organizations ◽  
Care Needs ◽  
Study Protocols ◽  
The Social ◽  
Palliative Care Needs

AbstractObjectivesWith people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.MethodsAn integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.ResultsSeven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.Significance of resultsThe results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

2018 ◽  
Vol 33 (2) ◽  
pp. 250-256 ◽  
Author(s):  
Anita Chung ◽  
Aileen Collier ◽  
Merryn Gott
Keyword(s):  
Palliative Care ◽  
Grey Literature ◽  
Well Being ◽  
Research Literature ◽  
Integrative Review ◽  
Empirical Literature ◽  
Family Carers ◽  
Care Needs ◽  
Palliative Care Needs ◽  
Support Family

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified ( n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

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