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.

An Integrative Review of the Role of Palliative Care in Lung Transplantation

2020 ◽  
Vol 30 (2) ◽  
pp. 147-154
Author(s):  
Patricia C. Pawlow ◽  
Caroline L. Doherty ◽  
Nancy P. Blumenthal ◽  
Lea Ann Matura ◽  
Jason D. Christie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lung Transplantation ◽  
Symptom Management ◽  
Lung Transplant ◽  
Integrative Review ◽  
Care Needs ◽  
Transplant Patients ◽  
Palliative Care Needs

Background: Lung transplant patients experience significant physical symptoms and psychological stress that affect their quality of life. Palliative care is an interdisciplinary specialty associated with improved symptom management and enhanced quality of life. Little, however, is known about the palliative care needs of lung transplant patients and the role it plays in their care. Aim: The aim of this integrative review was to synthesize the literature describing the palliative care needs, the current role, and factors influencing the integration of palliative care in the care of lung transplant patients. Design/Data Sources: We searched PubMed, Scopus, CINAHL, and Embase to identify English-language, primary studies focused on palliative care in adult lung transplantation. Study quality was evaluated using Strengthening the Report of Observational studies in Epidemiology and Consolidated Criteria for Reporting Qualitative Research criteria. Results: Seven articles were included in the review. Most were single-center, descriptive studies. Two studies used qualitative and 5 used quantitative methodologies. Collectively, these studies suggest that palliative care is typically consulted for physical and psychological symptom management, although consultation is uncommon and often occurs late in the lung transplant process. We found no studies that systematically assessed palliative needs. Misperceptions about palliative care, communication challenges, and unrealistic patient/family expectations are identified barriers to the integration. While limited, evidence suggests that palliative care can be successfully integrated into lung transplant patient management. Conclusions: Empirical literature about palliative care in lung transplantation is sparse. Further research is needed to define the needs and opportunities for integration into the care of these patients.

scholarly journals A Multidimensional Strategy to Improve Quality of Life in Patients with Multiple Symptoms and Palliative Care Needs: the Development of the MuSt-PC

2018 ◽  
Vol 56 (6) ◽  
pp. e60-e61
Author(s):  
Albert de Heij ◽  
Lotte van der Stap ◽  
Agnes van der Heide ◽  
Yvonne Engels ◽  
Heidi Fransen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Improve Quality ◽  
Care Needs ◽  
Multiple Symptoms ◽  
Palliative Care Needs

scholarly journals Palliative Care in High-Grade Glioma: A Review

2020 ◽  
Vol 10 (10) ◽  
pp. 723
Author(s):  
Rita C. Crooms ◽  
Nathan E. Goldstein ◽  
Eli L. Diamond ◽  
Barbara G. Vickrey
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Care Delivery ◽  
High Grade Glioma ◽  
Functional Independence ◽  
High Grade ◽  
Care Needs ◽  
Palliative Care Needs

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

A model of early integration of palliative care into oncology care for patients with metastatic colorectal cancer.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 142-142
Author(s):  
Carling Jade Ursem ◽  
Laura Cantino ◽  
Ingrid Maravilla ◽  
Nicole Thompson ◽  
Chloe Evelyn Atreya ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Palliative Care ◽  
Care Program ◽  
Palliative Care Program ◽  
Care Needs ◽  
Control Phase ◽  
Psychosocial Concerns ◽  
Palliative Care Needs

142 Background: Current NCCN guidelines recommend that “institutions should develop processes for integrating palliative care into cancer care.” However, it is not clear what the best method is for implementing this integrated care. Palliative care needs specific to patients with metastatic colorectal cancer (mCRC) and best practices for integration of outpatient palliative and oncologic care in mCRC are not well understood. Methods: We conducted a pre-post prospective cohort study to evaluate the palliative care needs of mCRC patients and the implementation of an integrated palliative care program. In both the control and implementation phase, we enrolled patients with mCRC within 90 days of diagnosis or establishing care for mCRC at UCSF. Patients were surveyed regarding their symptoms, quality of life, psychosocial concerns, functional status and understanding of prognosis. During the control phase, patients received usual oncologic care. Based on survey results from the control phase, we designed a palliative care program to target the needs identified. In the intervention phase, patients are receiving longitudinal palliative care integrated into their usual cancer care. Results: The 30 patients in the control phase reported anorexia, fatigue and poor quality of life as their most common symptoms. Common psychosocial challenges were transportation, insurance/financial and difficulty with treatment decisions. Patients also had unrealistic expectations of their prognosis. In order to improve these identified issues, we designed and implemented an integrated palliative care program that includes weekly multidisciplinary meetings with oncology and palliative care providers and proactive palliative care visits from the time of diagnosis, which occur within the oncology clinic at a time that coincides with oncology visits. Conclusions: Physical symptoms, psychosocial concerns and poor prognostic awareness are common among patients with mCRC. We have implemented an integrated palliative care program to address these needs. Evaluation of the effectiveness of this intervention is ongoing.

scholarly journals Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

2020 ◽  
Vol 17 (15) ◽  
pp. 5457 ◽  
Author(s):  
Doris Y. P. Leung ◽  
Helen Y. L. Chan ◽  
Patrick K. C. Chiu ◽  
Raymond S. K. Lo ◽  
Larry L. Y. Lee
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Palliative Care ◽  
Caregiver Burden ◽  
Indirect Effect ◽  
Self Efficacy ◽  
Care Needs ◽  
Positive Direct ◽  
Palliative Care Needs

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life.

Patients with acquired immunodeficiency syndrome

2015 ◽  
pp. 628-649
Author(s):  
Carl A. Kirton ◽  
Deborah Witt Sherman
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Care Needs ◽  
Acquired Immunodeficiency ◽  
Aggressive Care ◽  
Immunodeficiency Syndrome ◽  
Palliative Care Needs

This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other health-care professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

Significados e Sentimentos de Cuidados Paliativos: o Discurso do Sujeito Coletivo de Acadêmicos de Enfermagem e Medicina/ Meanings and Feelings of Palliative Care: the Collective Subject Discourse of Nursing Students and Medicine

1970 ◽  
Vol 3 (3) ◽  
pp. 35-45 ◽  
Author(s):  
Marcela Weitzembaur Dos Reis ◽  
Priscila Da Silva ◽  
José Vitor Da Silva ◽  
Jorge Leonardo Narcy ◽  
Maria Cristina Porto Silva
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Nursing Students ◽  
Social Representations ◽  
Structured Interview ◽  
Care Needs ◽  
The University ◽  
Palliative Care Needs ◽  
De Medicina

Objetivos: identificar as características pessoais e acadêmicas dos alunos de enfermagem e medicina em seus últimos períodos escolares; conhecer os significados de cuidados paliativos e identificar os sentimentos desses acadêmicos em relação aos pacientes com necessidades de cuidados paliativos. Materiais e métodos: o estudo foi de abordagem qualitativa, do tipo exploratório, descritivo e transversal. A amostra se constituiu de 50 acadêmicos da Universidade do Vale do Sapucaí, Pouso Alegre, MG, que se encontravam no último ano do curso, sendo 25 de enfermagem e os demais de medicina.  A amostragem foi intencional ou teórica. Utilizaram-se dois instrumentos para coleta de dados: Caracterização pessoal e acadêmica e o Roteiro de entrevista semiestruturada. Empregaram-se as estratégias metodológicas do Discurso do Sujeito Coletivo para a análise dos dados. Resultados e discussão: do tema significados de cuidados paliativos, emergiram as seguintes representações sociais: qualidade de vida sem visar à cura, diversos significados e cuidados. Do tema sentimentos relacionados aos cuidados paliativos, identificaram-se que estes foram de conotação positiva e negativa, bem como sentimentos de ambivalência. Em relação aos motivos, encontraram-se como ideias centrais principais as concepções de diversos aspectos, ajudar ao paciente e fazer bem ao paciente. Conclusão: os significados, sentimentos e seus motivos foram muito diversificados, assumindo caráter multidimensional.  Palavras chave: Cuidados Paliativos; Sentimentos; Acadêmicos.    ABSTRACT Objectives: To identify the characteristics of personal and academic nursing and medical students in their last school term; know the meaning of palliative care and identify the feelings of those academics in relation to patients with palliative care needs. Materials and methods: The study was a qualitative, exploratory, descriptive and transversal. The sample consisted of 50 students of the University of Vale do Sapucai, Pouso Alegre, MG, who were in the final year, 25 nurses and other medical. The sample was intentional or theoretical. Two instruments were used for data collection: Characterization personal and academic roadmap and semi-structured interview. Were employed the methodological strategies of the Collective Subject Discourse for data analysis. Results: the meaning palliative care, social representations emerged the following: quality of life without seeking to cure, many meanings and care. Theme feelings related to palliative care, were identified the sewere positive and negative connotations as well as feelings of ambivalence. Regarding the reasons, it was found as the main central ideas conceptions of various aspects, to help the patient and makegood to the patient. Conclusion: the meanings, feelings and motives were very diverse, assuming multidimensional.  Keywords: Palliative Care; Feelings; Academics.

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