The satisfaction of parents with quality of palliative care rendered to their children

Abstract

The pediatric palliative care (PC) is the physical, mental and spiritual care of children as well as support of their family members. The purpose of the study - to investigate satisfaction of parents of children with severe refractory diseases with availability and quality of PC in the Moscow region. The prospective cohort study was carried out using sociological survey in 2020-2021 on the basis of the "Moscow Oblast Hospice (for children)". The survey involved 300 people (63.7% of total number of patients). The most common symptoms were shortness of breath (41.8%), impaired concentration (36.4%) and constipation (36.4%). The most common psychological symptoms were anxiety (29.1%) and sleep disorders (17.8%). The parents rated availability of PC at 7.0 (5.0; 8.0) points out of 10.0, territorial accessibility of PC at 7.0 (5.0; 8.0) points, the quality of PC received at 8.0 (6.0; 9.0) points. Almost two-thirds of respondents rated volume of PC provided as limited and only 31.0% as sufficient. The number of palliative beds in hospitals was assessed by 71.7% as limited, and by 17.0% as sufficient. According to respondents, PC provision service requires, first of all, improvement of funding (80.2%) and organization of new hospices (55.7%). The majority of children received medical assistance (99.3%). Only 23.7% received psychological, 12.2% pedagogical, 24.5% social and 4.3% legal support. The research, identification of needs, targeted care based on individual approach can support children and their family members, reduce discomfort and suffering. Support of children receiving PC and their families are key components of qualitative and affordable PC in pediatrics.