Roger Watson, Editor-in-Chief
There can be few things that have more impact on a family than the death of a child. But the period leading up to death is also hard. Where parents may receive post-bereavement counselling, support is also needed when death is approaching as this study from Switzerland by Eskola et al (2017) titled: 'Maintaining family life balance while facing a child’s imminent death—A mixed methods study' and published in JAN explores.
The aim of the study was to: 'understand parents’ experiences and needs during a child’s end-of-life care at home and to identify systemic factors that influence its provision.' From a nationwide study in Switzrland between 2012-2015, 47 families were studied between 2011-2102 who had a dying child at home. Information from questionnaires and interviews was used.
The physical and emotional toll on some parents is captured in this quote from one father: 'I drove home in the evening, parked in front of the garage. . . Do you think I was able to get out of the car?! I remained seated three quarters of an hour, just sat there and slept. In fact, I was at home, but couldn’t manage to get out of the car. No energy, empty batteries.' Practical help was really appreciated as explained by one mother: 'This daily household crap—getting groceries, cooking, cleaning, paying the bills (. . .) It would have been so nice, if there had been somebody to take over all these tasks and we could have spent the time with our child.' The authors concluded: 'Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents needs could be better met.'
You can listen to this as a podcast
Eskola K, Bergstraesser E, Zimmerman K, Cignacco E (2017) Maintaining family life balance while facing a child’s imminent death—A mixed methods study Journal of Advanced Nursing DOI: 10.1111/jan.13304