Paediatric end-of-life care - symptoms and problems: parent assessment


Paediatric end-of-life care - symptoms and problems: parent assessment


Lykke C; Ekholm O; Olsen M; Sjogren P


BMJ Supportive & Palliative Care




children; end-of-life care; paediatric; parent assessment; symptom experiences and/or burden


OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics. RESULT(S): Children >=3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death. CONCLUSION(S): According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.


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Lykke C; Ekholm O; Olsen M; Sjogren P, “Paediatric end-of-life care - symptoms and problems: parent assessment,” Pediatric Palliative Care Library, accessed May 28, 2024,