scholarly journals Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations

2021 ◽  
pp. 026921632110652
Author(s):  
Dania Schuetze ◽  
Cornelia Ploeger ◽  
Michaela Hach ◽  
Hannah Seipp ◽  
Katrin Kuss ◽  
...  
Keyword(s):  
Palliative Care ◽  
International Standards ◽  
Communication Style ◽  
Pediatric Palliative Care ◽  
Care Providers ◽  
Require Time ◽  
Palliative Care Teams ◽  
Field Notes ◽  
Care Practices ◽  
High Level

Background: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.

scholarly journals Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  
Keyword(s):  
Palliative Care ◽  
Retrospective Cohort ◽  
Pediatric Patients ◽  
Palliative Care Team ◽  
Pediatric Palliative Care ◽  
Care Needs ◽  
Palliative Care Teams ◽  
Primary Care Clinicians ◽  
Palliative Care Needs ◽  
Screening Scale

Abstract Background Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. Methods This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. Results The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. Conclusion The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.

scholarly journals International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS

2022 ◽  
Author(s):  
Franca Benini ◽  
Danai Pappadatou ◽  
Mercedes Bernadá ◽  
Finella Craig ◽  
Lucia De Zen ◽  
...  
Keyword(s):  
Palliative Care ◽  
International Standards ◽  
Pediatric Palliative Care

A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States

2018 ◽  
Vol 17 (03) ◽  
pp. 269-275 ◽  
Author(s):  
Samuel M. Kase ◽  
Elisha D. Waldman ◽  
Andrea S. Weintraub
Keyword(s):  
United States ◽  
Palliative Care ◽  
Pilot Study ◽  
Compassion Fatigue ◽  
Compassion Satisfaction ◽  
Clinical Situation ◽  
The United States ◽  
Pediatric Palliative Care ◽  
Care Providers ◽  
Cross Sectional

AbstractObjectiveCompassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States.MethodThe Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed.ResultsThe survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a “clinical situation,” physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about “coworkers,” emotional depletion, social isolation, and “recent involvement in a clinical situation in which life-prolonging activities were not introduced” were significant determinants of BO. Physical exhaustion, personal history of trauma, “recent involvement in a clinical situation in which life-prolonging activities were not introduced,” and not discussing distressing issues were significant predictors of lower CS scores.Significance of resultsCF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.

scholarly journals Exploring Health Professionals’ Experiences With a Virtual Learning and Mentoring Program (Project ECHO) on Pediatric Palliative Care in South Asia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110430
Author(s):  
Megan Doherty ◽  
Shokoufeh Modanloo ◽  
Emily Evans ◽  
Jennifer Rowe ◽  
Dennis Newhook ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Education ◽  
South Asia ◽  
Learning Community ◽  
Health Care Providers ◽  
Qualitative Description ◽  
Pediatric Palliative Care ◽  
Healthcare Outcomes ◽  
Care Providers ◽  
Project Echo

Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care providers in low-and middle-income countries benefit from and learn from this type of training. This qualitative description study explores the learning experiences of participants in a Project ECHO program on pediatric palliative care in South Asia through focus group discussions. Discussions were transcribed, coded, independently verified, and arranged into overarching themes. We identified learning themes including the importance of creating a supportive learning community; the opportunity to share ideas and experiences; gaining knowledge and skills, and access to additional learning materials. Designing future programs to ensure a supportive and interactive learning community with attention cultural challenges may enhance learning from future Project ECHO programs.

Patients With Substance Use Disorder

2021 ◽  
pp. 351-363
Author(s):  
Hunter Woodall
Keyword(s):  
Palliative Care ◽  
Substance Use ◽  
Substance Use Disorder ◽  
Physician Assistants ◽  
Psychosocial Issues ◽  
Care Providers ◽  
Multidisciplinary Communication ◽  
Drug Diversion ◽  
Palliative Care Teams ◽  
Screening And Diagnosis

Palliative care providers, including physician assistants, frequently encounter substance use disorder (SUD) in patients or their families. Many of these patients with SUD remain undiagnosed at the time of palliative care referral, with most patients with these issues having preexisting conditions. Management of these patients requires proper screening and diagnosis, and teams must establish clear expectations. This chapter teaches palliative care teams to detect SUD and differentiate addiction behaviors from incompletely managed symptoms; diagnose and manage associated psychosocial issues; communicate clear expectations regarding treatment; safely prescribe controlled medications; manage intoxication or withdrawal; and develop plans to deal with drug diversion. Ongoing timely multidisciplinary communication is paramount in managing these challenging illnesses.

scholarly journals ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

2021 ◽  
pp. 026921632110006
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Good Practice ◽  
System Response ◽  
Free Text ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Palliative Care Units

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. Design: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. Setting/participants: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. Conclusions: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called ‘frugal innovations’, in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225

scholarly journals The Use of Medical Cannabis in Pediatric Palliative Care: A Case Series

2021 ◽  
Author(s):  
Antuan Divisic ◽  
Irene Avagnina ◽  
Valentina De Tommasi ◽  
Anna Santini ◽  
Laura Brogelli ◽  
...  
Keyword(s):  
Palliative Care ◽  
Clinical Experience ◽  
Plant Extract ◽  
Cannabis Sativa ◽  
Case Series ◽  
Pediatric Palliative Care ◽  
Control Treatment ◽  
Medical Cannabis ◽  
Treatment Resistant ◽  
High Level

Abstract Background: Medical cannabis may be a useful tool for the management of treatment-resistant epilepsy and chronic pain, which affect many patients who are in PPC; however, little evidence is available in this setting. Case presentation: We aimed to describe a clinical experience, in a setting where high-level evidence may not be obtained. We report our clinical experience in a pediatric palliative care department in Italy. Caregivers reported changes in intensity and frequency of pain and epilepsy events. Six patients received a titrated plant extract of cannabis sativa for 1 year. Only mild and transient adverse events occurred. All patients experienced seizures during the pre-treatment observation period, and obtained a reduction in seizure frequency, although with variable extent while receiving cannabis. In addition, a benefit on pain was observed, based on the caregiver’s evaluation, and a reduction of analgesic use. Conclusion: Our experience suggests that a titrated plant extract preparation of medical cannabis may be useful to control treatment-resistant pain and epilepsy in PPC patients.

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