Development levels of pediatric palliative care teams and the extent of palliative care understanding and implementation among pediatric oncologists in China

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.

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The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada

Journal of Palliative Medicine ◽

10.1089/jpm.2017.0028 ◽

2017 ◽

Vol 20 (11) ◽

pp. 1210-1216 ◽

Cited By ~ 2

Author(s):

Kimberley Widger ◽

Christina Vadeboncoeur ◽

Shayna Zelcer ◽

Ying Liu ◽

Alisha Kassam ◽

...

Keyword(s):

Palliative Care ◽

Administrative Data ◽

Pediatric Palliative Care ◽

Children With Cancer ◽

Health Administrative Data ◽

Palliative Care Teams

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

Journal of Palliative Medicine ◽

10.1089/jpm.2010.0523 ◽

2011 ◽

Vol 14 (6) ◽

pp. 704-707 ◽

Cited By ~ 35

Author(s):

George Fitchett ◽

Kathryn A. Lyndes ◽

Wendy Cadge ◽

Nancy Berlinger ◽

Erin Flanagan ◽

...

Keyword(s):

Palliative Care ◽

Pediatric Palliative Care ◽

Palliative Care Teams

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

Palliative Medicine ◽

10.1177/02692163211065294 ◽

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.

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Visualizing social support in home pediatric palliative care using network maps

Palliative Medicine ◽

10.1177/0269216319870673 ◽

2019 ◽

Vol 34 (3) ◽

pp. 378-386 ◽

Cited By ~ 2

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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Identifying the Deliberate Prevention and Intervention Strategies of Pediatric Palliative Care Teams Supporting Providers during Times of Staff Distress

Journal of Palliative Medicine ◽

10.1089/jpm.2015.0425 ◽

2016 ◽

Vol 19 (6) ◽

pp. 679-683 ◽

Cited By ~ 6

Author(s):

Danielle F. Jonas ◽

Jori F. Bogetz

Keyword(s):

Palliative Care ◽

Intervention Strategies ◽

Pediatric Palliative Care ◽

Prevention And Intervention ◽

Palliative Care Teams

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Trisomy 18 – When the Diagnosis Is Compatible With Life

10.21203/rs.3.rs-1149893/v1 ◽

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.

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Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada

BMC Palliative Care ◽

10.1186/s12904-021-00884-2 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Vasiliki Rahimzadeh ◽

Cristina Longo ◽

Justin Gagnon ◽

Conrad Fernandez ◽

Gillian Bartlett

Keyword(s):

Palliative Care ◽

Policy Issue ◽

Practice Change ◽

Pediatric Palliative Care ◽

Perceived Fairness ◽

Implementation Barriers ◽

Deliberative Process ◽

Allied Health Professionals ◽

Palliative Care Teams

Abstract Background In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). Methods Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. Results Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9–10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants’ reasoning about whether LDTs would change their own clinical practice (3–10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. Conclusion The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.

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