Trisomy 18 – When the Diagnosis Is Compatible With Life

2021 ◽  
Author(s):  
Catarina Silva ◽  
Mariana Cortez Ferreira ◽  
Jorge Saraiva ◽  
Cândida Cancelinha
Keyword(s):  
Palliative Care ◽  
Ethical Issues ◽  
Trisomy 18 ◽  
Medical Community ◽  
Pediatric Palliative Care ◽  
Surgical Interventions ◽  
Chronic Medication ◽  
Feeding Difficulties ◽  
Palliative Care Teams ◽  
One Year

Abstract Trisomy 18 is an autosomal chromosomal disorder characterized by the presence of an extra 18 chromosome. In the last decades, and as the therapeutic options have become more relevant, the medical community witnessed a paradigm shift on the offer of treatment to these children.This is a retrospective, cohort study that strives to characterize the clinical path and survival of the children with the diagnosis of trisomy 18, accompanied in a tertiary pediatric hospital between 1995 and 2020.Six children were identified with trisomy 18, two of them mosaic (33,3%) and four were females (66,7%). All had cardiovascular, cognitive and physical development anomalies or minor congenital anomalies (n=6, 100%) and most presented musculoskeletal anomalies (n=5, 83,3%) and feeding difficulties (n=4, 66,7%). Four children (66,7%) were reliant on devices or equipment and all needed chronic medication (n=6, 100%). Two children (33,3%) were submitted to surgical interventions. Four children (66,7%) were hospitalized in the last year of life. A decision of limitation of therapeutic effort was present in three cases (50%) with one child being referenced to pediatric palliative care (16,7%). One-month, one-year and ten-year survival were 66,7% (n=4), 33,3% (n=2, both mosaic), and 16,7% (n=1, mosaic) respectively.Conclusions: Knowledge on the clinical picture is of great importance regarding the neonatal care and the decisions about invasive treatments, which can involve ethical issues, highlighting, concurrently, the need for attempted referral of these children to pediatric palliative care teams.

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 69 Exploring learners’ perspectives of a pediatric palliative care tele-mentoring and education program (project ECHO) in a resource-limited setting

2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e29-e29
Author(s):  
Emily Evans ◽  
Megan Doherty ◽  
Shokoufeh Modanloo ◽  
Jennifer Rowe ◽  
Dennis Newhook ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
South Asia ◽  
Healthcare Professionals ◽  
Pediatric Palliative Care ◽  
Learning Resources ◽  
Resource Limited Settings ◽  
Project Echo ◽  
Resource Limited ◽  
One Year

Abstract Introduction/Background More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been identified as a significant barrier to improving access to palliative care. Project ECHO (Extension of Community Healthcare Outcomes) is an online tele-mentoring educational platform developed to improve access to specialist care in these underserved areas. From 2018 to 2019, we piloted a one-year Project ECHO program which provided pediatric palliative care training for healthcare professionals mainly within India and surrounding South Asian countries. Objectives The objective of this study was to explore the learning experiences of participants in a Project ECHO on pediatric palliative care in South Asia and explore considerations to improve ECHO to cater to the unique learning needs and challenges for healthcare professionals in resource-limited settings. Design/Methods We implemented a one-year Project ECHO targeting healthcare providers in South Asia, which consisted of 24 bi-weekly 90-minute sessions. Learners who attended at least 20% (5 sessions) were invited to participate in focus groups. Focus groups were designed to explore participants’ experiences and the perceived strengths and weaknesses of the program. Recordings of the focus group sessions were transcribed, coded and independently verified. The codes were then arranged into overarching themes. Results Seventeen individuals from India and Bangladesh participated in four focus groups at the end of ECHO PPC. Following coding and analysis, two major themes and seven sub-themes were identified. The themes included: (1) Benefits of participation in ECHO PPC (creation of a community of practice; opportunity to exchange cultures, ideas and experiences; supportive role of the facilitator and peers; increased relevant knowledge and skills; and access to additional learning resources) and (2) Barriers to participation (difficulties with time and practice schedule management; and language and sociocultural factors). Conclusion Healthcare professionals in resource-limited settings benefit from project ECHO through the creation of a supportive, online learning community of peers where ideas, experiences and learning resources can be shared. Addressing barriers to participation may enhance the learning experience of project ECHO in the future.

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
Keyword(s):  
Palliative Care ◽  
Trisomy 18 ◽  
Pediatric Palliative Care ◽  
Care Services ◽  
Palliative Care Services

The Role of Professional Chaplains on Pediatric Palliative Care Teams: Perspectives from Physicians and Chaplains

2011 ◽  
Vol 14 (6) ◽  
pp. 704-707 ◽  
Author(s):  
George Fitchett ◽  
Kathryn A. Lyndes ◽  
Wendy Cadge ◽  
Nancy Berlinger ◽  
Erin Flanagan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Palliative Care ◽  
Palliative Care Teams

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.

Visualizing social support in home pediatric palliative care using network maps

2019 ◽  
Vol 34 (3) ◽  
pp. 378-386 ◽  
Author(s):  
Daniela Lindemann ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
Maria Wasner
Keyword(s):  
Social Support ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
Oral Feedback ◽  
Digital Network ◽  
The Social ◽  
Palliative Care Teams

Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers’ support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

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