The Arc of Generational Care: A Case Series Considering Grandparent Roles and Care Needs in Pediatric Palliative Care

2019 ◽  
Vol 15 (2-3) ◽  
pp. 99-110 ◽  
Author(s):  
Emily Kuhn ◽  
Sabrina Schalley ◽  
Meghan Potthoff ◽  
Meaghann S. Weaver
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  

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.


2019 ◽  
Vol 18 (4) ◽  
pp. 473-485 ◽  
Author(s):  
Maha Atout

AbstractObjectiveThe importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.MethodsThe electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000–2015.ResultsFinding revealed that working with children with palliative care needs is an emotionally struggling job for nurses, especially when they try to manage the transition of pediatric patients from curative to palliative care. Staffing level and time constraints comprise a major obstacle in pediatric palliative care. Focusing on invasive treatment and technology in spite of the feelings that it will not improve patients' health status intensifies the feeling of guilt and helplessness for nurses. Finally, nurses asserted the importance of receiving pediatric palliative care education, especially how to communicate with children with palliative care needs and their families.Significance of resultsFurther research is recommended with regard to nurses' experience in communication with children with palliative care needs. Nursing education in pediatric palliative care is significantly important, especially how to communicate with children with palliative care needs and their families.


2019 ◽  
Vol 34 (2) ◽  
pp. 132-138 ◽  
Author(s):  
Gregorio Zuniga-Villanueva ◽  
Jose Luis Ramirez-GarciaLuna ◽  
Kevin Weingarten

Background: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. Objective: To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care. Methods: A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists. Results: A total of 242 pediatricians responded. The majority had not received palliative care education (92.6%) and felt uncomfortable discussing palliative needs with patients and families (92.1%). The mean score of the questionnaire was 6.8 (±1.4) of 10 correct answers. Knowledge in palliative care was associated with exposure to oncologic patients ( P = .01) and previous palliative care education ( P = .02) but inversely related to the pediatrician’s age ( P = .01). Comfort addressing patient’s palliative care needs was associated with knowledge in palliative care ( P < .01), exposure to oncologic patients ( P = .03), and previous education in palliative care ( P = .02). Conclusions: Although Mexican pediatricians have basic knowledge of palliative care concepts, they do not feel comfortable addressing palliative care needs, suggesting that the main barrier for implementing palliative care is not the lack of knowledge but rather feeling uncomfortable when addressing these issues with patients and families. Educational programs should incorporate strategies that could help physicians develop comfort in approaching palliative care patients.


2021 ◽  
Author(s):  
Antuan Divisic ◽  
Irene Avagnina ◽  
Valentina De Tommasi ◽  
Anna Santini ◽  
Laura Brogelli ◽  
...  

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.


2017 ◽  
Vol 20 (3) ◽  
pp. 216-217 ◽  
Author(s):  
Meaghann Shaw Weaver ◽  
Denice Schroeder ◽  
Christopher Wichman ◽  
Sue Bace ◽  
Catherine Vail ◽  
...  

2021 ◽  
Vol 47 (1) ◽  
Author(s):  
Antuan Divisic ◽  
Irene Avagnina ◽  
Valentina De Tommasi ◽  
Anna Santini ◽  
Laura Brogelli ◽  
...  

Abstract Background Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (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: drowsiness, euphoria, restlessness and tachycardia; the resolution was either spontaneous or obtained by modifying the administration schedule. Treatment was never discontinued. No overdoses 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.


2016 ◽  
Vol 15 (1) ◽  
pp. 51-56 ◽  
Author(s):  
Fahisham Taib ◽  
Hans Van Rostenberghe ◽  
Nurul Adilah Muhammad

Holistic package of palliative care service for children is not available in most places in the South East Asia. This has resulted in unwanted suffering and loss of hope in the unfortunate families. Pediatric palliative care (PPC) is a new subspecialty in Malaysia. In our region, it was started in 2012 as a University’s ‘community engagement project’ following completion of self-initiated palliative care distance learning in Australia by a pediatrician. The grant was labeled as a flagship project and secured under the Division of Community & Industry Network of USM (BJIM) to provide service in the hospital and outreach home based PPC services, which include nursing care, needs assessment and psychosocial support for the patients and caregivers. ‘Knowledge transfer program’ was initiated, in collaboration with Yayasan Orang Kurang Upaya (YOKUK) or Kelantan Foundation for the Disabled, to equip the outreach team with skills dealing with children with life limiting illnesses (LLI) in Kelantan. The move has propagated regular training setup with transformational program from hospital to community settings. This setup has led to mutual cooperation across the disciplines and provided linkages for stronger networking and training either locally or internationally. Better understanding on the importance of palliative care in the community can be achieved by having active community participation and volunteerism.Bangladesh Journal of Medical Science Vol.15(1) 2016 p.51-56


Author(s):  
Eleny Romanos-Sirakis ◽  
Seleshi Demissie ◽  
Alice Fornari

Objectives: To evaluate the feasibility and efficacy of a new multi-modal pediatric palliative care curriculum. We sought to determine the effect on comfort in palliative care, knowledge, and change in behavior by utilizing these skills with patients, and determine which modalities were most effective for residents. Study Design: 25 pediatric residents were exposed to the 4-part curriculum. The modalities utilized in this curriculum included didactics, role-play, videos, case-discussion, small group activities, simulation, poetry and reflection. Results: The pediatric residents self-reported an increase in comfort and knowledge of the components of pediatric palliative care after this curriculum. In addition, 74% of residents were able to identify a patient experience in which a component of the palliative care curriculum was utilized directly in patient care. The effectiveness of techniques utilized in this multimodal curriculum varied; residents reported that the poetry and reflection components were less effective, as compared with the role-play, simulation and other active learning components. Conclusions: Implementation of a multi-modal palliative care curriculum was effective in increasing knowledge in palliative care, comfort in breaking bad news, and caring for patients with palliative care needs. This can be translated into a change in behavior to utilize these new skills in the care of various patients in pediatrics. Among the various techniques used to teach this curriculum, residents reported that the techniques that most incorporated active learning and were directly applicable to the professional role of the resident were rated most valuable. This curriculum was well received, feasible and effective for pediatric residents.


Children ◽  
2021 ◽  
Vol 8 (3) ◽  
pp. 250
Author(s):  
Gregorio Zuniga-Villanueva ◽  
Jorge Alberto Ramos-Guerrero ◽  
Monica Osio-Saldaña ◽  
Jessica A. Casas ◽  
Joan Marston ◽  
...  

Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standards of care and quality indicators that meet local PPC needs while considering the sociocultural landscape of Latin America and its population.


Sign in / Sign up

Export Citation Format

Share Document