scholarly journals Arts Engagement Facilitated by Artists With Individuals With Life-limiting Illness: An Integrative Review of the Literature

2021 ◽  
Author(s):  
Jennifer Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Visual Arts ◽  
Well Being ◽  
Integrative Review ◽  
Future Research ◽  
Review Of The Literature ◽  
Knowledge Gaps ◽  
Arts Engagement ◽  
Eol Care

Abstract BackgroundLiving with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement, facilitated by artists, promotes a sense of well-being and connection with others. However, much of the evidence is drawn from the use of the arts in broad health contexts or from creative arts therapies’ literature. This review aimed to systematically identify and synthesize existing evidence in order to reveal key knowledge gaps and to inform future research and practice. MethodsAn integrative review of the literature was conducted using a pre-defined, comprehensive search strategy. Databases searched included: PubMed inclusive of MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase. Search terms included variations on visual arts, literary arts, and performing arts; service users or patients; and palliative care or end-of-life care. The quality and rigor of articles were scored using Hawker and colleagues’ tool designed to systematically appraise disparate studies. Synthesis was conducted using a constant comparison method as outlined in the integrative review framework.ResultsEight reviewed studies explored literary, performing, and visual arts engagement in residential hospice, day hospice, and hospitals in England, the United States, France, and Canada. Seven of eight studies used qualitative methods and one study engaged in mixed methods. Patient perspectives were most commonly represented followed by health care professionals and family members. Creative writing, music, and visual art were predominant modalities whilst dance and theatre were underrepresented. Themes identified across studies associated arts engagement with 1) a sense of well-being, 2) a newly discovered, or re-framed, sense of self, 3) connection with others, 4) challenges associated with practice. ConclusionThis review synthesized current evidence and key knowledge gaps regarding artists' facilitation of arts engagement in palliative and end-of-life (EOL) care. It serves as a starting point in the consideration of next steps in standardizing professional practice and preparation for artists working in palliative and EOL care settings specifically. Recommendations for future research include exploring the value of collaboration between artists and palliative care teams when engaging with individuals living with life-limiting illness.

scholarly journals Arts engagement facilitated by artists with individuals with life-limiting illness: A systematic integrative review of the literature

2021 ◽  
pp. 026921632110458
Author(s):  
Jenny Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
Sense Of Self ◽  
Well Being ◽  
The United States ◽  
Health Condition ◽  
Future Research ◽  
Eligibility Criteria ◽  
The Arts ◽  
Art Form ◽  
Arts Engagement

Background: Living with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement facilitated by artists promotes well-being. However, no synthesis of the literature exists to describe arts engagement delivered by artists with individuals receiving palliative care. Aim: To systematically review and synthesize evidence to identify outcomes and key knowledge gaps to inform future research and practice. Design: A systematic integrative literature review was conducted using a pre-defined search strategy and reported using PRISMA guidelines. Analysis was conducted iteratively and synthesis achieved using constant comparison to generate themes. Data sources: PubMed/MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase were searched for studies published between database inception and August 2020. Search terms included variations on arts/artists; patients/service users; and palliative or end-of-life care. Eligibility criteria was applied and study quality assessed. Results: Seven reviewed studies explored literary, performing, and visual arts engagement in hospitals, hospice and community settings in England, the United States, France, and Canada. Study designs, interventions and findings were discussed. Themes identified across studies associated arts engagement with (1) a sense of well-being, (2) a newly discovered, or re-framed, sense of self, (3) connection with others, and (4) challenges associated with practice. Conclusion: Recommendations for future research were offered in order to maximize benefits, minimize risks and address complexity of artists’ engagement in palliative care including: (1) consistency in methods and reporting; (2) inclusion of wider perspectives; and (3) key considerations for adapting the arts by health condition and art form.

Spirituality, Spiritual Well-Being, and Spiritual Coping in Advanced Heart Failure: Review of the Literature

2018 ◽  
Vol 37 (1) ◽  
pp. 56-73 ◽  
Author(s):  
Clayton C. Clark ◽  
Jennifer Hunter
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Spiritual Care ◽  
Theoretical Models ◽  
Well Being ◽  
Spiritual Coping ◽  
Future Research ◽  
Review Of The Literature ◽  
Qualitative Approaches ◽  
Spiritual Well Being

Heart failure is a chronic and terminal disease that affects a significant portion of the U.S. population. It is marked by considerable suffering, for which palliative care has been recommended. Palliative care standards require the inclusion of spiritual care, but there is a paucity of literature supporting effective spiritual interventions for the heart failure population. A literature search resulted in 30 articles meeting the criteria for review of spirituality and spiritual coping in the heart failure population. Findings within this body of literature include descriptive evidence of the uniqueness of spirituality in this population, quantitative and qualitative approaches to inquiry, theoretical models of spiritual coping, and proposed interventions. The article concludes with implications for future research and practice.

scholarly journals Arts engagement facilitated by artists with individuals with life-limiting illness: A systematic integrative review of the literature

2021 ◽  
Author(s):  
Jennifer Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
Sense Of Self ◽  
Well Being ◽  
The United States ◽  
Health Condition ◽  
Future Research ◽  
Eligibility Criteria ◽  
The Arts ◽  
Art Form ◽  
Arts Engagement

Abstract Background: Living with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement facilitated by artists promotes well-being. However, no synthesis of the literature exists to describe arts engagement delivered by artists with individuals receiving palliative care. Aim: to systematically review and synthesize evidence to identify outcomes and key knowledge gaps to inform future research and practiceDesign: A systematic integrative literature review was conducted using a pre-defined search strategy and reported using PRISMA guidelines. Analysis was conducted iteratively and synthesis achieved using constant comparison to generate themes.Data sources: PubMed/MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase were searched for studies published between database inception and August 2020. Search terms included variations on arts/artists; patients/service users; and palliative or end-of-life care. Eligibility criteria was applied and study quality assessed. Results: Seven reviewed studies explored literary, performing, and visual arts engagement in hospitals, hospice and community settings in England, the United States, France, and Canada. Study designs, interventions and findings were discussed. Themes identified across studies associated arts engagement with 1) a sense of well-being, 2) a newly discovered, or re-framed, sense of self, 3) connection with others, and 4) challenges associated with practice. Conclusion: Recommendations for future research were offered in order to maximize benefits, minimize risks and address complexity of artists’ engagement in palliative care including: 1) consistency in methods and reporting; 2) inclusion of wider perspectives; and 3) key considerations for adapting the arts by health condition and art form.

scholarly journals End of life breast cancer care in women with severe mental illnesses

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Guillaume Fond ◽  
Vanessa Pauly ◽  
Audrey Duba ◽  
Sebastien Salas ◽  
Marie Viprey ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Palliative Care ◽  
Health Disparities ◽  
Major Depression ◽  
End Of Life ◽  
High Intensity ◽  
Bipolar Disorders ◽  
Mental Illnesses ◽  
Targeted Interventions ◽  
Eol Care

AbstractLittle is known on the end-of-life (EOL) care of terminal breast cancer in women with severe psychiatric disorder (SPD). The objective was to determine if women with SPD and terminal breast cancer received the same palliative and high-intensity care during their end-of-life than women without SPD. Study design, setting, participants. This population-based cohort study included all women aged 15 and older who died from breast cancer in hospitals in France (2014–2018). Key measurements/outcomes. Indicators of palliative care and high-intensity EOL care. Multivariable models were performed, adjusted for age at death, year of death, social deprivation, duration between cancer diagnosis and death, metastases, comorbidity, smoking addiction and hospital category. The analysis included 1742 women with SPD (287 with bipolar disorder, 1075 with major depression and 380 with schizophrenia) and 36,870 women without SPD. In multivariate analyses, women with SPD had more palliative care (adjusted odd ratio aOR 1.320, 95%CI [1.153–1.511], p < 0.001), longer palliative care follow-up before death (adjusted beta = 1.456, 95%CI (1.357–1.555), p < 0.001), less chemotherapy, surgery, imaging/endoscopy, and admission in emergency department and intensive care unit. Among women with SPD, women with bipolar disorders and schizophrenia died 5 years younger than those with recurrent major depression. The survival time was also shortened in women with schizophrenia. Despite more palliative care and less high-intensity care in women with SPD, our findings also suggest the existence of health disparities in women with bipolar disorders and schizophrenia compared to women with recurrent major depression and without SPD. Targeted interventions may be needed for women with bipolar disorders and schizophrenia to prevent these health disparities.

Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

2021 ◽  
pp. 104990912110186
Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Fast Track ◽  
Hospice Care ◽  
Cannabis Use ◽  
Care Plan ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

Association between perceptions of prognosis and end-of-life outcomes for patients with advanced lung and gastrointestinal cancer.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6503-6503
Author(s):  
Carlisle E. W. Topping ◽  
Madeleine Elyze ◽  
Rachel Plotke ◽  
Lauren Heuer ◽  
Charu Vyas ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Gastrointestinal Cancer ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Cancer Type ◽  
Linear Regression Models ◽  
Care Intervention ◽  
Eol Care ◽  
At Home

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.

Hospitalization burden and end-of-life (EOL) care in elderly patients with glioblastoma (GBM).

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 31-31
Author(s):  
Laura Donovan ◽  
Donna Buono ◽  
Melissa Kate Accordino ◽  
Jason Dennis Wright ◽  
Andrew B. Lassman ◽  
...  
Keyword(s):  
Socioeconomic Status ◽  
Palliative Care ◽  
Elderly Patients ◽  
Marital Status ◽  
End Of Life ◽  
Remaining Life ◽  
Care Services ◽  
Palliative Care Services ◽  
Race Ethnicity ◽  
Eol Care

31 Background: GBM is associated with a poor prognosis and early death in elderly patients. Prior studies have demonstrated a high burden of hospitalization in this population. We sought to evaluate and examine trends in hospitalizations and EOL care in GBM survivors. Methods: Using SEER-Medicare linked data, we performed a retrospective observational cohort study of patients aged ≥ 65 years diagnosed with GBM from 2005-2017 who lived at least 6 months from the time of diagnosis. Aggressive EOL care was defined as: chemotherapy or radiotherapy within 14 days of death (DOD), surgery within 30 DOD, > 1 emergency department visit, ≥ 1 hospitalization or intensive care unit admission within 30 DOD; in-hospital death; or hospice enrollment ≤ 3 DOD. We evaluated age, race, ethnicity, marital status, gender, socioeconomic status, comorbidities, prior treatment and percentage of time hospitalized. Multivariable logistic regression was performed to determine factors associated with aggressive end of life care. Results: Of 5827 patients, 2269 (38.9%) survived at least 6 months. Among these, 1106 (48.7%) survived 6-12 months, 558 (24.6%) survived 12-18 months, and 605 (26.7%) survived > 18 months. Patients who survived 6-12 months had the highest burden of hospitalization and spent a median of 10.6% of their remaining life in the hospital compared to those surviving 12-18 months (5.4%) and > 18 months (3%) (P < 0.001). 10.1% of the cohort had claims for palliative care services; 49.8% of initial palliative care consults occurred in the last 30 days of life. Hospice claims existed in 83% with a median length of stay 33 days (IQR 12, 79 days). 30.1% of subjects received aggressive EOL care. Receiving chemo at any time (OR 1.510, 95% CI 1.221-1.867) and spending ≥ 20% of life in the hospital after diagnosis (OR 3.331, 95% CI 2.567-4.324) were associated with aggressive EOL care. Women (OR 0.759, 95% CI 0.624-0.922), patients with higher socioeconomic status (OR 0.533, 95% CI 0.342-0.829), and those diagnosed ≥ age 80 (OR 0.723, 95% CI 0.528-0.991) were less likely to receive aggressive EOL care. Race, ethnicity, marital status, and extent of initial resection were not associated with aggressive EOL care. Conclusions: A minority of elderly patients with GBM in the SEER-Medicare database survived ≥ 6 months; hospitalizations were common and patients spent a significant proportion of their remaining life hospitalized. Although hospice utilization was high in this cohort, 30% of patients received aggressive EOL care. Despite the aggressive nature of GBM, few patients had palliative care consults during their illness. Increased utilization of palliative care services may help reduce hospitalization burden and aggressive EOL care in this population.

scholarly journals Ankyloglossia and breastfeeding: what is the evidence of association between them?

Revista CEFAC ◽  
2020 ◽  
Vol 22 (3) ◽  
Author(s):  
Mariana do Rêgo Barros de Andrade Fraga ◽  
Kamilla Azoubel Barreto ◽  
Thaís Christine Barbosa Lira ◽  
Pâmella Robertha Rosselinne Paixão Celerino ◽  
Izi Tuanny da Silva Tavares ◽  
...  
Keyword(s):  
Neonatal Screening ◽  
Scientific Evidence ◽  
Integrative Review ◽  
Future Research ◽  
Evaluation Instrument ◽  
Review Of The Literature ◽  
Early Weaning ◽  
Maternity Hospitals ◽  
The Relationship

ABSTRACT Purpose: to investigate the scientific evidence, in the literature, of the relationship between ankyloglossia and breastfeeding difficulties. Methods: an integrative review of the literature. The MEDLINE and PubMed databases were searched, using the following descriptors in combination: "ankyloglossia", "newborn" and "breastfeeding". The searches included articles published between 2014 and 2019, in Portuguese, English and Spanish. Original articles demonstrating an association between ankyloglossia and breastfeeding issues were selected. Results: a total of 31 articles was fully read in the analysis, 22 of which were excluded and 9 included in the review. There was a diversity of instruments used for the diagnosis of ankyloglossia. In four studies, no standardized evaluation instrument was used for the diagnosis of ankyloglossia, which may limit the analysis of the results. However, most studies have evidenced a possible influence of ankyloglossia on breastfeeding. According to the studies, babies with altered lingual frenulum were more likely to experience difficulties in sucking, showing early weaning, which shows the importance of neonatal screening as a routine protocol in maternity hospitals for the cases of ankyloglossia. Conclusions: ankyloglossia may be related to impaired breastfeeding. The standardization of instruments for the diagnosis of ankyloglossia is necessary to improve the evidence in future research.

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.

Improving the Quality of Care across All Settings

2019 ◽  
pp. 573-605
Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
The United States ◽  
Healthcare Settings ◽  
National Priority ◽  
Hospice And Palliative Care ◽  
Eol Care ◽  
Clinician Assessment ◽  
Care Path

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.

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