scholarly journals Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors

2019 ◽  
Vol 33 (6) ◽  
pp. 704-711 ◽  
Author(s):  
Franziska Flaig ◽  
Julia D Lotz ◽  
Kathrin Knochel ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Prenatal Diagnosis ◽  
Parental Support ◽  
Psychosocial Support ◽  
Healthcare Providers ◽  
Care Program ◽  
Future Research ◽  
Counseling Services ◽  
Qualitative Interview Study ◽  
Perinatal Palliative Care

Background: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%–85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. Aim: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. Design: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. Setting/participants: A total of 10 professionals from three different pregnancy counseling services participated in the study. Results: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. Conclusion: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

scholarly journals Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review

2019 ◽  
Author(s):  
Megan E Doherty ◽  
Liam Power ◽  
Robin Williams ◽  
Nahal Stoppels ◽  
Lynn Grandmaison Dumond
Keyword(s):  
Palliative Care ◽  
Chart Review ◽  
Retrospective Chart Review ◽  
Care Program ◽  
Trisomy 13 ◽  
Future Research ◽  
Factors Affecting ◽  
Paediatric Palliative Care ◽  
Perinatal Palliative Care ◽  
Limiting Condition

Abstract Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.

scholarly journals Complexity In The Context of Palliative Care: A Scoping Review

2021 ◽  
Author(s):  
Hironori Ohinata ◽  
Maho Aoyama ◽  
Mitsunori Miyashita
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Specific ◽  
Future Research ◽  
Care Needs ◽  
Living Situation ◽  
Research Activities ◽  
Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

scholarly journals How to Integrate Palliative Care Within Primary Healthcare- Perspectives of People Living With Serious Illnesses, Their Family Caregivers and Primary Healthcare Professionals in Nigeria

2021 ◽  
Author(s):  
Oladayo A Afolabi ◽  
Kennedy Nkhoma ◽  
Olaitan Soyannwo ◽  
Akinyemi Aje ◽  
Adesola Ogunniyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Primary Healthcare ◽  
Healthcare Providers ◽  
Health Coverage ◽  
Middle Income ◽  
Healthcare Facilities ◽  
Care Integration ◽  
Qualitative Interview Study ◽  
Building Information

Abstract Background Palliative care should be integrated into primary healthcare systems within low- and middle-income countries to achieve Universal Health Coverage goals. We aimed to identify preferences and expectations for primary healthcare support among people living with serious illness and their families in Nigeria, and to determine feasible steps palliative care integration within the health system. Methods Qualitative interview study with 48 participants including people living with serious illnesses (n=21) and their family caregivers (n=15) recruited from specialist clinics at a Teaching hospital in Nigeria; and healthcare providers (n=12) recruited from three primary healthcare facilities in Nigeria. Data were analysed using thematic analysis. Results Three major themes were identified. 1) Balancing patients and families’ expectations and preferences for easily accessible service and opportunities for social interaction and adequate communication with available human resource. 2) Engaging patients requires existing trust and bonds from their current use of primary healthcare and support to develop patients’ agency. 3) Development of healthcare providers is needed to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation. Conclusions Palliative care integration within primary healthcare in Nigeria can be achieved through building information and communication skills of healthcare providers, engaging and empowering patients to exercise their agency in care decisions, and adequately delineating healthcare providers’ roles to ensure staff work within their competencies and training.

Development a Palliative Care Program for Colorectal Cancer Patients: A Mixed Methods Protocol study (Preprint)

2021 ◽  
Author(s):  
Masoumeh Masoumy ◽  
Masoud Bahrami ◽  
Alireza sadeghi ◽  
Rohallah Mosavizadeh
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Palliative Care ◽  
Cancer Patients ◽  
Cultural Context ◽  
Care Program ◽  
Future Research ◽  
Palliative Care Program ◽  
Colorectal Cancer Patients

BACKGROUND Introduction: Colorectal cancer (CRC) is the third most common cancer in Iranian men and the second in Iranian women and it is a serious health problem in the Iran health system. OBJECTIVE Objective: The purpose is to develop a holistic palliative care program in order to improve the health and quality of life of colorectal cancer patients. METHODS Methods: This is an exploratory mixed methods study which will be conducted using a sequential qualitative-quantitative design (QUAL quan) consists of four sequential steps using the approach proposed by Ewles & Sminett to develop the program. In the first step, a qualitative study (semi-structured interview), the researcher discovers the needs of colorectal cancer patients from the perspective of patients, family members and care providers. In the second step, the literature review will be performed with the aim of confirming and completing the discovering new needs. In the third step, a initial draft of the palliative care program will be developed based on data extracted from qualitative study and literature review, experts’ panel opinions. In the fourth step, according to the opinions of the panel of experts, the part of the developed program will be implemented as quasi-experimental intervention and the effect of intervention on quality of life will be evaluated. RESULTS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion. CONCLUSIONS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion.

scholarly journals Addressing Perinatal Palliative Care Program Development (401)

2010 ◽  
Vol 39 (2) ◽  
pp. 371-372 ◽  
Author(s):  
Robin F. Kramer ◽  
Sally Sehring ◽  
Tina Ratto ◽  
Linda M. Hopkins
Keyword(s):  
Palliative Care ◽  
Program Development ◽  
Care Program ◽  
Palliative Care Program ◽  
Perinatal Palliative Care

scholarly journals The importance of providing palliative care for patients with severe COVID-19 in Indonesia

2021 ◽  
Author(s):  
Christantie Effendy ◽  
Martina Sinta Kristanti
Keyword(s):  
Palliative Care ◽  
Health Care Providers ◽  
Health Workers ◽  
Psychosocial Support ◽  
Healthcare Providers ◽  
Care Providers ◽  
Case Scenario ◽  
Severe Condition ◽  
Dying With Dignity ◽  
The Common

Patients with Coronavirus Disease 2019 (COVID-19), particularly those with a severe condition, might not survive. Pandemic situation challenges the healthcare providers in addressing palliative care to the patients. This paper aimed to describe the importance of providing palliative care for patients with severe COVID-19 in Indonesia. We used a case scenario to illustrate the common condition experienced by a patient with severe COVID-19. Health care providers in Indonesia could address palliative care for patients with COVID-19 by focusing on controlling the symptoms, avoiding futile intervention, and connecting the patients and their families. Nurses need to consider the patients’ needs for family supports, even though not in physical or psychosocial support, and help the patients who need end-of-life care to be dying with dignity. Communication technology must be utilized optimally by healthcare providers to realize the communication among the patients, families, and health workers. 

scholarly journals Strategies for introducing outpatient specialty palliative care in gynecologic oncology.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 111-111
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Marie Bakitas ◽  
Megan Crowley-Makota ◽  
Renata Urban ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Future Research ◽  
Patient Anxiety ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

111 Background: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well-described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semi-structured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (± 10). Mean interview length was 25 minutes (± 7). Gynecologic oncologists described three main strategies for introducing outpatient specialty palliative care: first establish a strong primary relationship and trust with patients in order to alleviate fear and increase acceptance of referral; focus initial palliative care referral on symptom control to gain a “foot in the door”, facilitate early relationship-building with palliative care clinicians, and dissociate palliative care from end-of-life; and normalize and explain palliative care referral to decrease patient anxiety and confusion. These strategies aimed to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusions: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. Future research should examine patient perception of these strategies and assess impact on rates of acceptance of outpatient specialty palliative care referral.

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