‘Creating a safe space’: how perinatal palliative care coordinators navigate care and support for families

Background: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. Aims: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. Methods: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. Findings: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. Conclusions: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.

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

Palliative Medicine ◽

10.1177/0269216319834225 ◽

2019 ◽

Vol 33 (6) ◽

pp. 704-711 ◽

Cited By ~ 3

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.

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

Paediatrics & Child Health ◽

10.1093/pch/pxz089 ◽

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.

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Feedback for Learning in Pharmacy Education: A Scoping Review

Pharmacy ◽

10.3390/pharmacy9020091 ◽

2021 ◽

Vol 9 (2) ◽

pp. 91

Author(s):

Nicholas R. Nelson ◽

Rebecca B. Carlson ◽

Amanda H. Corbett ◽

Dennis M. Williams ◽

Denise H. Rhoney

Keyword(s):

Student Perceptions ◽

Study Design ◽

Scoping Review ◽

Clinical Training ◽

Pharmacy Education ◽

Future Research ◽

Development Programs ◽

Quality Feedback ◽

English Articles ◽

Work Up

Feedback is an effective pedagogy aimed to create cognitive dissonance and reinforce learning as a key component of clinical training programs. Pharmacy learners receive constant feedback. However, there is limited understanding of how feedback is utilized in pharmacy education. This scoping review sought to summarize the breadth and depth of the use of feedback within pharmacy education and identify areas for future research. PubMed, Embase, Scopus, and Web of Science were searched for English articles since January 2000 to identify studies related to feedback in pharmacy education. Sixty-four articles were included for analysis, stratified by moderate and major theory talk, where moderate theory talk explicitly included feedback into study design and major theory talk included feedback into both study design and analysis. Feedback was provided in Bachelor (14%), Master (15.6%), Doctor of Pharmacy (67.2%) and post-graduate programs (4.7%) on a variety of curricular objectives including communication and patient work up in didactic, objective structured clinical examination (OSCE), and experiential settings, and career/interview preparation in the co-curriculum. Feedback comments were mostly written in didactic courses, and both written and verbal in OSCE, experiential, and co-curricular settings. The pharmacy education feedback literature lacks depth beyond student perceptions, especially with respect to assessing the effectiveness and quality of feedback for learning. While feedback has been utilized throughout pharmacy education across myriad outcomes, several areas for inquiry exist which can inform the design of faculty and preceptor development programs, ensuring provision of effective, quality feedback to pharmacy learners.

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The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015

BMC Health Services Research ◽

10.1186/s12913-021-06335-1 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Sarina R. Isenberg ◽

Christopher Meaney ◽

Peter May ◽

Peter Tanuseputro ◽

Kieran Quinn ◽

...

Keyword(s):

Palliative Care ◽

Metastatic Cancer ◽

Estimating Equation ◽

Population Based ◽

Future Research ◽

Chronic Obstructive ◽

Discharge Abstract Database ◽

High Involvement ◽

Hospitalization Costs ◽

The Cost

Abstract Background Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients’ receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. Methods Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. Results There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). Conclusions Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

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The evaluation of a palliative care programme for people suffering from life-limiting diseases

Journal of Clinical Nursing ◽

10.1111/jocn.12094 ◽

2013 ◽

Vol 23 (1-2) ◽

pp. 113-123 ◽

Cited By ~ 14

Author(s):

Carmen WH Chan ◽

Ying Yu Chui ◽

Sek Ying Chair ◽

Michael MK Sham ◽

Raymond SK Lo ◽

...

Keyword(s):

Palliative Care ◽

Care Programme ◽

Palliative Care Programme

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Nursing Perspectives: Building an Interprofessional Perinatal Palliative Care Team

NeoReviews ◽

10.1542/neo.15-10-e422 ◽

2014 ◽

Vol 15 (10) ◽

pp. e422-e425 ◽

Cited By ~ 3

Author(s):

B. Dean ◽

K. McDonald

Keyword(s):

Palliative Care ◽

Palliative Care Team ◽

Care Team ◽

Perinatal Palliative Care

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Implementation of an integrated care programme to avoid fragility fractures of the hip in older adults in 18 Bavarian hospitals – study protocol for the cluster-randomised controlled fracture liaison service FLS-CARE

BMC Geriatrics ◽

10.1186/s12877-020-01966-1 ◽

2021 ◽

Vol 21 (1) ◽

Cited By ~ 1

Author(s):

Isabel Geiger ◽

◽

Christian Kammerlander ◽

Christine Höfer ◽

Ruth Volland ◽

...

Keyword(s):

Hip Fracture ◽

Healthcare System ◽

Fragility Fractures ◽

Term Care ◽

Care Programme ◽

Secondary Fracture ◽

Cluster Randomised ◽

German Healthcare System ◽

Randomised Controlled ◽

Fracture Liaison

Abstract Background The economic and public health burden of fragility fractures of the hip in Germany is high. The likelihood of requiring long-term care and the risk of suffering from a secondary fracture increases substantially after sustaining an initial fracture. Neither appropriate confirmatory diagnostics of the suspected underlying osteoporosis nor therapy, which are well-recognised approaches to reduce the burden of fragility fractures, are routinely initiated in the German healthcare system. Therefore, the aim of the study FLS-CARE is to evaluate whether a coordinated care programme can close the prevention gap for patients suffering from a fragility hip fracture through the implementation of systematic diagnostics, a falls prevention programme and guideline-adherent interventions based on the Fracture Liaison Services model. Methods The study is set up as a non-blinded, cluster-randomised, controlled trial with unequal cluster sizes. Allocation to intervention group (FLS-CARE) and control group (usual care) follows an allocation ratio of 1:1 using trauma centres as the unit of allocation. Sample size calculations resulted in a total of 1216 patients (608 patients per group distributed over 9 clusters) needed for the analysis. After informed consent, all participants are assessed directly at discharge, after 3 months, 12 months and 24 months. The primary outcome measure of the study is the secondary fracture rate 24 months after initial hip fracture. Secondary outcomes include differences in the number of falls, mortality, quality-adjusted life years, activities of daily living and mobility. Discussion This study is the first to assess the effectiveness and cost-effectiveness/utility of FLS implementation in Germany. Findings of the process evaluation will also shed light on potential barriers to the implementation of FLS in the context of the German healthcare system. Challenges for the study include the successful integration of the outpatient sector as well as the future course of the coronavirus pandemic in 2020 and its influence on the intervention. Trial registration German Clinical Trial Register (DRKS) 00022237, prospectively registered 2020-07-09

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