scholarly journals Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

2019 ◽  
Vol 179 (6) ◽  
pp. 903-907 ◽  
Author(s):  
Jonathan Mullin ◽  
Joanne Wolfe ◽  
Myra Bluebond‐Langner ◽  
Finella Craig
Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.


2016 ◽  
Vol 34 (2) ◽  
pp. 125-131 ◽  
Author(s):  
LeeAi Chong ◽  
Adina Abdullah

Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. Conclusions: These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.


Author(s):  
Maryam Rassouli MD ◽  
Naiire Salmani MD ◽  
Zahra Mandegari MSc ◽  
Atena Dadgari MSc ◽  
Bahare Fallah Tafti MSc ◽  
...  

Pediatric palliative care is a holistic caring approach for children and families that begins with diagnosis of a life-threatening illness and continues until death; it aimed to relieve pain and other symptoms in physical, mental, social and spiritual aspects. In spite of available evidence concerning optimal outcomes of the provision of palliative care, establishment of a palliative care system for children has hardly been feasible so far due to a number of challenges. Therefore, this review study aimed at identifying the challenges of the provision of pediatric palliative care along with the relevant solutions. The identified challenges were classified into two categories including structure-based challenges (i.e. lack of a clear structure in the health system and classification of services, shortage of specialized staff, insufficient home care services, absence of health care tariffs along with insurance coverage of palliative care services) and process-based challenges (i.e. absence of guidelines, lack of educational programs for family, family attitudes and beliefs, communication barriers, and lack of access to opioids). Thereafter, the solutions for each challenge are provided in accordance with the available literature separately. Given the significance of palliative care for children with cancer and in order to improve the quality of life of the children and the families, it appears necessary that policymakers and managers take account of the challenges as well as the feasibility and the implementation of provided solutions.


2020 ◽  
Vol 7 (4) ◽  
pp. 94-96
Author(s):  
Dr. Abhijit Shinde ◽  
Dr. Sunil Natha Mhaske ◽  
Dr. Ramesh Kothari ◽  
Dr. Sonal Shinde

In the India, more than 30 per 1000 live births of infants die each year before, during, or after birth as do many children with life- limiting conditions. In most countries in the developed world including the United States, the vast majority of infants, children and teenagers at end of life do not have access to multidisciplinary pediatric palliative care services in their community or at a children’shospital. Pediatric palliative care is for children and teenagers suffering from life- threatening or life-limiting conditions in which survival into adulthood is or may be jeopardized if curative treatments  fail. As a result, pediatric palliative care may last over many years.


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