Polyhandicap et accès aux soins : le modèle interventionnel des soins palliatifs

Abstract

In order to improve the care of children with severe psychomotor impairment, this project proposed to apply the interventional model of pediatric palliative care to children without life threatening conditions. An initial semi-directive interview carried out at family homes made an inventory of the situation of the children and their families. The care needs identified led to interventions for 6 to 12 months. A care quality assessment questionnaire and an open satisfaction questionnaire were sent to the families. The 28 families included expressed difficulties and shortcomings in their health course. The needs relate to the medical, psychological, and social spheres, underlining the need for linking the different partners of care. The interventions mainly consisted of coordination, as well as the start of projects for requests for respite and training, particularly in pain assessment. The end-of-study questionnaires particularly show satisfaction with the initial interview, but no impact on quality of life was found. We found that the parents of children with severe psychomotor impairment are asking for an extended interview in their living environment to express their difficulties and their needs, as is usually offered by palliative care teams. The various requests from families can be answered by linking the different care partners, but also by setting up systems dedicated to severe psychomotor impairment.