Research
Print page Print page
Switch language
The Capital Region of Denmark - a part of Copenhagen University Hospital
E-pub ahead of print

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

Research output: Contribution to journalJournal articleResearchpeer-review

  1. Oncology to specialised palliative home care systematic transition: the Domus randomised trial

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. Clinical research in cancer palliative care: a metaresearch analysis

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. Bereaved caregivers of patients with high-grade glioma: a systematic review

    Research output: Contribution to journalReviewpeer-review

  1. Methylphenidate as Needed for Fatigue in Patients With Advanced Cancer. A Prospective, Double-Blind, and Placebo-Controlled Study

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. Validation of a Battery of Neuropsychological Tests for Patients With Metastatic Cancer

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. Oncology to specialised palliative home care systematic transition: the Domus randomised trial

    Research output: Contribution to journalJournal articleResearchpeer-review

  4. Opioider mod refraktær dyspnø i palliativ fase

    Research output: Contribution to journalJournal articleResearchpeer-review

View graph of relations

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.

Original languageEnglish
JournalBMJ Supportive and Palliative Care
ISSN2045-435X
DOIs
Publication statusE-pub ahead of print - 11 Mar 2021

    Research areas

  • paediatrics, symptoms and symptom management, terminal care

ID: 64362486