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

Abstract

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.

Methods 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.

Results 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 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.

  • paediatrics
  • symptoms and symptom management
  • terminal care

Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Any requests for data sharing should be put in writing to the corresponding author.

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