scholarly journals Quantifying the Language Barrier—A Total Survey of Parents’ Spoken Languages and Local Language Skills as Perceived by Different Professions in Pediatric Palliative Care

Children ◽  
2020 ◽  
Vol 7 (9) ◽  
pp. 118 ◽  
Author(s):  
Larissa Alice Dreier ◽  
Boris Zernikow ◽  
Julia Wager
Keyword(s):  
Palliative Care ◽  
Medical Staff ◽  
Mother Tongue ◽  
Language Skills ◽  
Care Facility ◽  
Pediatric Palliative Care ◽  
Local Language ◽  
Language Assessments ◽  
The Common ◽  
High Level

To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills and the consistency of professional assessments on these aspects. Using an adapted version of the “Common European Framework of Reference for Languages”, the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (N = 114) were assessed by (a) medical staff and (b) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level while 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution there can be discrepancies between the language assessments of different professions.

scholarly journals The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

Healthcare ◽  
2022 ◽  
Vol 10 (1) ◽  
pp. 127
Author(s):  
Su Hyun Bae ◽  
Yeo Hyang Kim
Keyword(s):  
Palliative Care ◽  
Medical Staff ◽  
Care Service ◽  
Care Center ◽  
Palliative Care Service ◽  
Disease Diagnosis ◽  
Pediatric Palliative Care ◽  
Number Of Patients ◽  
Palliative Care Services ◽  
Limiting Condition

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.

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.

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 The use of medical cannabis in pediatric palliative care: a case series

2021 ◽  
Vol 47 (1) ◽  
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 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.

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