scholarly journals Who Receives Home-Based Perinatal Palliative Care: Experience from Poland

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Aleksandra Korzeniewska-Eksterowicz ◽  
Łukasz Przysło ◽  
Bogna Kędzierska ◽  
Małgorzata Stolarska ◽  
Wojciech Młynarski
Keyword(s):  
Palliative Care ◽  
Neonatal Intensive Care ◽  
Hospice Care ◽  
Feeding Tube ◽  
Cardiac Insufficiency ◽  
Congenital Diseases ◽  
Care Experience ◽  
Home Based ◽  
Perinatal Palliative Care ◽  
Neonates And Infants

Context. The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units.Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011.Methods. A retrospective review of medical records.Results. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41%) were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56%) was cardiac insufficiency. Neurological symptoms (72%) and dysphagia (58%) were the most common clinical problems. The majority of children (45%) had a feeding tube inserted and were oxygen dependent (45%); 39 families received psychological care and 31 social supports.Conclusions. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

scholarly journals Palliative Cares To Older Person Under The Nurse's Optics

10.3823/2440 ◽  
2017 ◽  
Vol 10 ◽  
Author(s):  
Willan Nogueira Lima ◽  
Cintia Lira Borges ◽  
Bruna Karen Cavalcante Fernandes ◽  
Valderina Moura Lopes ◽  
Saul Filipe Pedrosa Leite ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Elderly Person ◽  
The Elderly ◽  
Structured Interview ◽  
Tertiary Hospital ◽  
Patient Centered ◽  
Cross Sectional ◽  
Care Experience ◽  
Care For The Elderly

INTRODUCTION: Chronic-degenerative diseases need specialized health care, especially in palliative care, since from the beginning of the disease the elderly is in this classification. In this context, the study aimed to know the meaning of palliative care to the elderly person from the nurse METHODS: This is a descriptive, cross-sectional, qualitative study carried out in a private tertiary hospital in the Northeast of Brazil. The survey was conducted from March to June 2016, with 19 nurses. In the data collection, a semi-structured interview, with four questions were used: what does palliative care mean to you? What does care for the elderly in hospice care mean to you? What strategies do you adopt to promote palliative care for the elderly? Tell me about your experience in providing palliative care to the elderly. The technique of data analysis and organization was the Discourse of the Collective Subject. RESULTS: Four categories of palliative care were produced: meaning palliative care; Experience in providing palliative care to the elderly; Meaning of caring for the elderly in palliative care; Strategies to promote palliative care for the elderly. CONCLUSION: The meaning of palliative care was synonymous with comfort and quality of life. It is important to emphasize the patient-centered care and to carry out further studies on the subject to make nursing professionals aware of the importance of promoting adequate behavior in palliative care.

Korean Physicians’ Perspectives on Prognostication in Palliative Care: A Qualitative Study

2019 ◽  
Vol 36 (6) ◽  
pp. 500-506
Author(s):  
Eon Sook Lee ◽  
Sang-Yeon Suh ◽  
Thomas W. LeBlanc ◽  
Sang Hwa Himchack ◽  
Sanghee Shiny Lee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Prognostic Scores ◽  
Future Research ◽  
Care Practice ◽  
Theory Approach ◽  
Structured Interviews ◽  
Care Experience ◽  
Dying Patients ◽  
Hospice And Palliative Care

Background: Prognostication is an essential component of palliative care for patients with advanced cancer but also poses challenges. Little is known about physicians’ perspectives on prognostication and prognostic tools used in palliative care practice in Eastern countries. Objectives: To explore Korean physicians’ perspectives and experiences with prognostication in their palliative care practices. Methods: Semi-structured interviews were conducted in Korea in 11 palliative care physicians. A constant comparative and grounded theory approach was used to derive themes from interview transcripts. Results: Participants on average had 6.4 (SD = 4.5, range 0.5-15) years of hospice and palliative care experience. We identified 4 main themes about prognostication: (1) the importance of prognostication (to help patients and their families prepare for death, to determine the appropriate time of transition to hospice care, to facilitate appropriate decision making, and to facilitate communication with patients and their families); (2) difficulties of prognostication (discomfort estimating the exact date of death); (3) basis of prognostication (clinical prediction of survival as well as prognostic scores); and (4) areas for further research (need for a simpler scoring system or parameters to predict survival with greater certainty). Conclusion: Palliative care physicians in Korea reported similar perceptions about the role and challenges inherent in prognostication compared to clinicians in Western cultures. However, they emphasize the need to predict final days to keep families with dying patients, reflecting family-centered aspects of Asian culture. They reported frustrations with inaccurate prognostication schemas and called for the development of simpler, more accurate predictors as a focus of future research.

scholarly journals Palliative care in the home: a case study of secondary histiocytic sarcoma in a 3-year-old child

2013 ◽  
Vol 3 (3) ◽  
pp. 267-270
Author(s):  
Zuzana Karabová ◽  
Lubica Ilievová
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Histiocytic Sarcoma ◽  
Social Challenges ◽  
Care Services ◽  
Home Based ◽  
Number Of Patients ◽  
Nursing Professionals ◽  
The Impact

This article describes the medical, psychological, and social challenges encountered during home-based, family-centred palliative care of a 3-year-old female with secondary histiocytic sarcoma diagnosed during treatment for T-cell acute lymphoblastic leukaemia. Histiocytic sarcoma is an exceedingly rare cancer in adults, but even less frequent and highly aggressive when presenting as a secondary cancer in children. Comprehensive, multidisciplinary paediatric hospice care services are not widely available across Slovakia,thus limiting the number of patients and families offered such highly specialized end-of-life care. This case study illustrates the primary benefits for the child and family of such a program as well as the impact on the medical and nursing professionals working in the fi eld of paediatric haematology-oncology.

scholarly journals Evaluation of Care Providers’ Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019

2021 ◽  
Vol 0 ◽  
pp. 1-8
Author(s):  
Arman Mohammadi ◽  
Mamak Tahmasebi ◽  
Leila Khanali Mojen ◽  
Maryam Rassouli ◽  
Hadis Ashrafizadeh
Keyword(s):  
Palliative Care ◽  
Neonatal Intensive Care ◽  
Teaching Hospitals ◽  
Care Providers ◽  
Health Authorities ◽  
Positive Attitudes ◽  
Treatment Type ◽  
Research Population ◽  
Perinatal Palliative Care ◽  
Evaluation Of Care

Objectives: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2019. In addition, the challenges of providing palliative care from the perspective of these individuals have been examined. Materials and Methods: In this descriptive study, the research population was selected through convenience sampling based on the inclusion criteria. To assess care providers’ attitude toward the perinatal palliative care and the challenges of its implementation, in addition to the questionnaire of demographic characteristics, a researcher-made questionnaire was also used. Results: Most of the care providers (90.5%) believed that parents should be involved in decision-making to select the treatment type. Most of the care providers (90%) believed that the lack of prepared infrastructures is one of the major challenges in providing these types of care. Conclusion: Care providers have almost positive attitudes toward the various dimensions of providing perinatal palliative care, but it has not been properly implemented yet due to the insufficient knowledge of this type of care, the lack of required infrastructures (appropriate conditions in NICUs to provide this type of care, the sufficient number of staff and experts in this field), as well as the health authorities’ neglecting this type of care.

scholarly journals Communication of bad news in the context of neonatal palliative care: experience of intensivist nurses

2022 ◽  
Vol 43 ◽  
Author(s):  
Beatriz Helena Naddaf Camilo ◽  
Taynnara Caroline Serafim ◽  
Natália Rejane Salim ◽  
Álida Maria de Oliveira Andreato ◽  
Júlia Rudzinski Roveri ◽  
...  
Keyword(s):  
Palliative Care ◽  
Neonatal Intensive Care ◽  
Structured Interview ◽  
Qualitative Approach ◽  
Bad News ◽  
Neonatal Intensive Care Units ◽  
Care Experience ◽  
The Family ◽  
The Face ◽  
The Subject

ABSTRACT Objectives: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. Methods: Study with a descriptive qualitative approach, in which 17 professionals participated. Data were collected through a semi-structured interview script, from December/2018 to February/2019, and submitted to content analysis. Results: Four theoretical categories emerged, with 11 subcategories inserted: meanings attributed to bad news; nursing as a support for the family; difficulties in dealing with the process of communicating bad news; nursing and involvement with the family’s suffering. Final considerations: The challenges to deal with the situation are related to lack of preparation, impotence, and subjectivities. The results broaden knowledge on the subject and enable the improvement of nursing care in this context.

scholarly journals New Structures in Neurology: Palliative Care for Neurological Patients

2017 ◽  
Vol 01 (03) ◽  
pp. E117-E126 ◽  
Author(s):  
Heidrun Golla ◽  
Gereon Fink ◽  
Roman Rolke ◽  
Stefan Lorenzl ◽  
Markus Ebke ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Neurological Diseases ◽  
Care Needs ◽  
Home Based ◽  
Adequate Care ◽  
Neurological Patients ◽  
Oncological Diseases ◽  
Limited Degree ◽  
Specific Care

AbstractAlthough patients with incurable neurological diseases suffer from a variety of distressing symptoms and may die from their neurological condition and associated complications, palliative and hospice care for these patients to date remains rare. Initial estimates indicate that on average 10% of all patients suffering from a neurological disease need palliative and hospice care. However, within German neurology departments, only few physicians (on average 1.3/department) and nurses (on average 2.2./department) are specialized in palliative and hospice care and only about 3% of patients cared for in palliative or hospice care structures suffer from neurological diseases (in contrast to the approximately 80% of patients suffering from oncological diseases). This rather low number is due to the gradual increase in the awareness of palliative and hospice care needs for neurological patients and a currently predominant supply of oncological patients in palliative and hospice care structures that are primarily aimed at these patients. Correspondingly, the special aspects of neurological patients are currently not adequately addressed in the palliative training curricula of healthcare professionals. Rather, patients with advanced neurological conditions are medically cared for by general practitioners and by the existing inpatient and outpatient neurology structures, which may also offer sub-specialty services. Consequently, adequate care for severely affected neurological patients becomes difficult as soon as these patients are hardly able to visit these structures because home-based specialist treatment is currently rendered and financed only to a limited degree. Novel yet to date rare approaches, mostly of international origin, suggest that these patients may benefit from specialized home-based services, combining neurological and palliative care expertise. At present, data that characterizes the situation of neuro-palliative care in Germany remains scarce. In addition to the already known supply gaps (e. g., low rate of neurologists trained in palliative medicine as well as of nurses working in neurology trained in palliative care, lack of consideration of the specific (care) needs of neurological patients in general and specialized palliative and hospice care structures, few available home-based outpatient specialists) research is a prerequisite to identify current gaps in palliative care of neurological patients in more detail and how these might be overcome in the future.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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