Parents' perspectives on losing a child due to life-limiting diagnoses: A population-based study

Parents' perspectives on losing a child due to life-limiting diagnoses: A population-based study

Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P

Palliative Medicine

2018

human; child; female; male; diagnosis; Denmark; palliative therapy; distress syndrome; adult; major clinical study; conference abstract; young adult; quality of life; Wales; malignant neoplasm; questionnaire; cause of death; directory

Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of parents who lost a child with life-limiting diagnoses. Method: A register-based study identified causes of death in children 0-18 years who died in the period 2012-2014 in Denmark. Potential palliative diagnoses were identified through a "Directory" elaborated in Wales1. Children who died the first day of life were excluded. A selfadministered questionnaire was used to assess severity of distress, needs and quality of life of parents to deceased children. We used a modified version of the questionnaire "To lose a child"2. Results: In total, 951 children died. Out of these 409 children were identified with life-limiting diagnoses. Of these 83 children (20%) died the first day of life. Thus, parents of 326 children were invited to participate and received a questionnaire. The response-rate was 41% and it ranged from 48% among parents of children with cancer to 20% among parents of children with circulatory diagnoses. Parents who lost their child >32 days after birth were more likely to participate (43%). Conclusion: We have received a unique material about parents' perspectives on losing a child with life-limiting diagnoses. The relatively low response-rate was expected due to the sensitive nature of the questionnaire; however, future planning of specialized pediatric palliative care in Denmark can be enriched by the parents' perspectives.

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August 2018 List