Pediatric Palliative Care: A Survey of Knowledge and Attitudes of Health care Professionals

• Main Authors: Joana Gomes Vieira, Marta Moniz, Tânia Marques, Hugo Martins, Rute Sequeira, Patricia Santos, Leonor Ferreira, Helena Ribeiro da Silva
• Format: Article
• Language: English
• Published: Sociedade Portuguesa de Pediatria 2021-04-01
• Series: Portuguese Journal of Pediatrics
• Online Access: https://pjp.spp.pt//article/view/19938
• ISSN: 2184-3333; 2184-4453

Introduction: Due to improvements in medical care, children with complex chronic diseases are living longer. Pediatric palliative care should be offered to these children and their families. The aim of the study was to evaluate the knowledge and attitudes of health care professionals of a pediatric department toward pediatric palliative care and identify the possible barriers to the referral of patients. Methods: A cross-sectional survey of health care professionals working in a pediatric hospital in Lisbon was conducted using a questionnaire that includes 18 multiple-choice questions and one open-ended question. Results: There were 140 health care professionals who completed the questionnaire. In the multiple-choice questions, 55% (n = 76) believe that pediatric palliative care should start at diagnosis, 91% (n =127) consider it to be as important as curative treatment, and 73% (n = 101) disagrees with the idea of pediatric palliative care being primarily about end-of-life care. The most common reason not to refer a child to pediatric palliative care was an uncertain prognosis (29%, n = 40). In the open-ended question, the most frequent expressions associated with the concept of palliative care were comfort/symptom management (54%, n = 44), quality of life (35%, n = 28), and end of life (32%, n = 26). Discussion: In our study, multiple-choice questions revealed health care professionals to be well informed regarding pediatric palliative care. Most health care professionals identified the moment of complex chronic diseases diagnosis as the ideal time to start pediatric palliative care. In open-ended questions, end-of life care was still associated with pediatric palliative care suggesting an unrecognized association of pediatric palliative care and death in the attitudes of health care professionals and a potential barrier to timely referral.