Aligning Guidelines And Medical Practice: Literature Review On Pediatric Palliative Care Guidelines
Cancer; Children & Youth; Death & Dying; Families & Family Life; Hospice Care; Literature Reviews; Medical Prognosis; Pain Management; Palliative Care; Pediatric Nursing; Pediatrics; Quality Of Care
Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. Method: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Results: Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Significance of results: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;OBJECTIVEPalliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.METHODTo identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.RESULTSConcerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.SIGNIFICANCE OF RESULTSOur results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;
De Clercq E; Rost M; Pacurari N; Elger BS; Wangmo T
Palliative and Supportive Care
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/abs/aligning-guidelines-and-medical-practice-literature-review-on-pediatric-palliative-care-guidelines/630EB6CB7D3372E6F66B839BB1E05AC8">10.1017/S1478951516000882</a>
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
Medical Records; Child; Palliative Care; Decision Making; Pediatric palliative care; Pediatric oncology; Decision-making; Only Child; Involvement of the child
PURPOSE: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care. METHODS: Using a standardized data extraction form, a retrospective review of medical records of deceased pediatric patients was conducted. The form captured information on demographics, diagnosis, relapse(s), treatments, decision-making during palliative care, and circumstances surrounding a child's death. RESULTS: For 170 patients, there was information on whether the child received palliative care. Among those, 38 cases (22%) did not receive palliative care. For 16 patients, palliative care began at diagnosis. The mean duration of palliative care was 145 days (Mdn = 89.5, SD = 183.4). Decision to begin palliative care was discussed solely with parent(s) in 60.9% of the cases. In 39.1%, the child was involved. These children were 13.6 years of age (SD = 4.6), whereas those not included were 7.16 years old (SD = 3.9). Leukemia patients were less likely to receive palliative care than the overall sample, and patients with CNS neoplasms received palliative care for a longer time than other patients. CONCLUSIONS: There are still high numbers of late or non-referrals, and even children older than 12 years were not involved in decision-making regarding palliative care. These results do not align with international organizational guidelines which recommend that palliative care should begin at diagnosis.
Rost M; Acheson E; Kuhne T; Ansari M; Pacurari N; Brazzola P; Niggli F; Elger BS; Wangmo T
Support Care Cancer
2018
<a href="http://doi.org/%2010.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4100-x</a>
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
adolescent; article; cancer mortality; cancer palliative therapy; central nervous system tumor/th [Therapy]; child; childhood cancer/th [Therapy]; clinical decision making; diagnosis related group; female; human; leukemia/th [Therapy]; major clinical study; male; medical record; priority journal; retrospective study; Switzerland; treatment duration
Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care.
Rost M; Acheson E; Kuhne T; Ansari M; Pacurari N; Brazzola P; Niggli F; Elger B S; Wangmo T
Supportive Care in Cancer
2707
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4100-x</a>