Facilitators and barriers perceptions to early referral to pediatric palliative care perceived

Abstract

The perception of facilitators and barriers to referral to pediatric palliative care (PPC) is a widely studied phenomenon, with scarce information in Latin America. Objective: to adapt a survey on the perception of facilitators and barriers to PPC referral and evaluation. Subjects and Method: electronic survey with cultural adaptation with translation-retrotranslation in pediatricians and pediatric subspecialists of 3 tertiary centers in Santiago. The survey consisted of 4 sections and 51 questions, corresponding to sociodemographic data (including self-perception of spirituality and religiosity), training and clinical practice of the respondent in PPC, and facilitators and barriers to referral to PPC. Results: 146 pediatricians were invited and 78 surveys were obtained (response rate: 53.4%). The median age was 42 years and 11.5 years of professional practice. The majority corresponded to pediatricians without subspecialty training (n = 34; 43.6%). Twenty-three (29.5%) of the participants received PPC training, which was perceived as insufficient in 17 (74%) cases; there were also no differences in PPC training when comparing pediatricians with or without subspecialty training. Ninety-five percent of the respondents agreed with the perceived benefit of early referral to PPC for patients with life-threatening pathologies, regardless of their diagnosis, although only 47.7% stated that they had made a referral to a PPC team. The emotional relationship with the patients and their families was perceived as a barrier by pediatricians in those subspecialists susceptible to PPC compared with those who were not (20% vs. 50%; p = 0.03). Conclusion: A significant deficit in PPC training was detected. There were no differences in facilitators and barriers between pediatricians and subspecialties susceptible to PPC. Specialties not accustomed to PPC-susceptible patients may be affected by emotional factors in their decisions.