Abstract
BackgroundMothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child’s end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care.MethodsSecondary analysis of a quantitative survey on parental needs during their child’s last 4 weeks of life, collected in the Swiss multicentre “Paediatric End-of-Life Care Needs” (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011–2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care.ResultsSeventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies.ConclusionsTo best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.
Highlights
Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life
Based on the values of family-centred care, paediatric palliative care (PPC) is driven by the needs of the patients as well as those of their parents and siblings [3]
Due to a gender imbalance occurring in research, findings about parental experiences and needs in PPC predominately represent the mothers’ perspective [10]
Summary
Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Differences in caregiving needs between mothers and fathers during their child’s end of life have not, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care. Fathers’ conflicts between work requirements and their desire to be with the child were reported [11] This literature reflects a heteronormative traditional family set up, which is certainly not representative for the entire population internationally, it remains the predominant family structure in many countries such as Switzerland, where this study was conducted [12]. Conditions and events occurring during the EOL phase of a child with cancer were found to contribute to prolonged grief, and were experienced differently by fathers than by mothers [15]
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