Cuestionario sobre cuidados paliativos a neuropediatras

Abstract

The paediatric neurologists surveyed frequently deal with children who suffer from incurable diseases. Their level of involvement with these patients is high. However, there is an overwhelming necessity and desire to receive more training to support these children and their families.

Conocimiento sobre cuidados paliativos pediátricos de los pediatras de atención primaria del Principado de Asturias, España

“…Los CPP no son exactamente cuidados paliativos similares a los de adultos aplicados en niños, sino que se diferencian en varios puntos que, a la vez, son limitaciones para su desarrollo 11 . Entre estas diferencias se encuentran las siguientes: -Menor número de casos (en el Principado de Asturias, la población mayoritaria es de edad avanzada, con una baja tasa de natalidad).…”

Quality of Care in Pediatric Palliative Care: A Scoping Review

“…Regarding the care process, the studies related to families [22,26,38,47] as well as patients [37,49] and professionals [20,26,29,41,43,47] include the variable of implementing a personalized care plan from the start of the intervention.…”

“…Most studies point to a lack of professional training [20,23,[27][28][29][30][31]33,38,[41][42][43]45]. Among the training topics that professionals consider necessary to implement PPC are the use of opioids and pain management [27], the limitation of therapeutic effort (LTE) [41], emotional management [21,26,29,43], the improvement of communication [23,29,31,43,47], and the improvement of the treatment given to families and patients [23,27,47].…”

“…Regarding healthcare teams, 13 studies [20,23,29,33,34,36,37,[42][43][44][46][47][48] discuss the need for PPC teams to be made up of professionals from various disciplines including nursing [23,34,36,37,43,47], home care [34,36,37], PPC specialists [20,29,34,36], and other disciplines such as pediatrics [20,34,37,47], psychology [29,33,43], neurology [20,29,34], oncology [29,36], and physiotherapy [34].…”

“…Lastly, 23 studies integrate variables related to patient care at the end of life [20,[23][24][25]27,[29][30][31][33][34][35][36][37][38][39][40]43,[46][47][48][49][50]54].…”