PMID- 35509046
OWN - NLM
STAT- MEDLINE
DCOM- 20220506
LR  - 20220716
IS  - 1472-684X (Electronic)
IS  - 1472-684X (Linking)
VI  - 21
IP  - 1
DP  - 2022 May 4
TI  - Bereaved parents' perspectives on their child's end-of-life care: connecting a 
      self-report questionnaire and interview data from the nationwide Paediatric 
      End-of-LIfe CAre Needs in Switzerland (PELICAN) study.
PG  - 66
LID - 10.1186/s12904-022-00957-w [doi]
LID - 66
AB  - BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best 
      possible quality of life for the child and his/her family by extending beyond the 
      physical domain into psychosocial and spiritual wellbeing. A deep understanding 
      of what is important to parents is crucial in guiding the further evaluation and 
      improvement of PPC and end-of-life (EOL) care services. Much can be learned from 
      specific positive and negative experiences of bereaved parents with the EOL care 
      of their child. This report builds upon a questionnaire survey as part of the 
      national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. 
      METHODS: One part of the PELICAN study was set up to assess and explore the 
      parental perspectives on their child's EOL care. Interview data were used to 
      explain the extremely positive and negative results of a quantitative survey in 
      an explanatory sequential mixed-methods approach. Data integration occurred at 
      different points: during sampling of the interview participants, when designing 
      the interview guide and during analysis. A narrative approach was applied to 
      combine the qualitative results reported here with the already published 
      quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers 
      (40%) participated in 20 family interviews. All parents reported having both 
      positive and negative experiences during their child's illness and EOL, which was 
      characterised by many ups and downs. The families transitioned through phases 
      with a prospect of a cure for some children as well as setbacks and changing 
      health status of the child which influenced prognosis, leading to the challenge 
      of making extremely difficult decisions. Severely negative experiences still 
      haunted and bothered the parents at the time when the interview took place. 
      CONCLUSIONS: A deep understanding of the perspectives and needs of parents going 
      through the devastating event of losing a child is important and a prerequisite 
      to providing compassionate care. This complex care needs to recognise and respond 
      to the suffering not only of the child but of the parents and the whole family. 
      Communication and shared decision-making remain pivotal, as do still improvable 
      elements of care that should build on trustful relationships between families and 
      healthcare professionals.
CI  - (c) 2022. The Author(s).
FAU - Zimmermann, Karin
AU  - Zimmermann K
AD  - Department Public Health (DPH), Nursing Science, University of Basel, 
      Bernoullistrasse 28, 4056, Basel, Switzerland. karin.zimmermann@unibas.ch.
AD  - Paediatric Palliative Care and Children's Research Center CRC, University 
      Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland. 
      karin.zimmermann@unibas.ch.
FAU - Marfurt-Russenberger, Katrin
AU  - Marfurt-Russenberger K
AD  - Children's Hospital of Eastern Switzerland, Claudiusstrasse 6, 9006, St. Gallen, 
      Switzerland.
FAU - Cignacco, Eva
AU  - Cignacco E
AD  - Health Department, Bern University of Applied Sciences, Bern, Switzerland.
FAU - Bergstraesser, Eva
AU  - Bergstraesser E
AD  - Paediatric Palliative Care and Children's Research Center CRC, University 
      Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland.
LA  - eng
GR  - KFS-3008-08-2012/Swiss Cancer Research Foundation/
PT  - Journal Article
DEP - 20220504
PL  - England
TA  - BMC Palliat Care
JT  - BMC palliative care
JID - 101088685
SB  - IM
MH  - Child
MH  - Female
MH  - Humans
MH  - Male
MH  - Parents/psychology
MH  - *Quality of Life
MH  - Self Report
MH  - Surveys and Questionnaires
MH  - Switzerland
MH  - *Terminal Care/psychology
PMC - PMC9066872
OTO - NOTNLM
OT  - End of life
OT  - Experiences
OT  - Mixed methods
OT  - Paediatrics
OT  - Palliative care
OT  - Parents
OT  - Terminal care
COIS- The authors declare that they have no competing interests.
EDAT- 2022/05/06 06:00
MHDA- 2022/05/07 06:00
PMCR- 2022/05/04
CRDT- 2022/05/05 00:07
PHST- 2021/05/31 00:00 [received]
PHST- 2022/04/27 00:00 [accepted]
PHST- 2022/05/05 00:07 [entrez]
PHST- 2022/05/06 06:00 [pubmed]
PHST- 2022/05/07 06:00 [medline]
PHST- 2022/05/04 00:00 [pmc-release]
AID - 10.1186/s12904-022-00957-w [pii]
AID - 957 [pii]
AID - 10.1186/s12904-022-00957-w [doi]
PST - epublish
SO  - BMC Palliat Care. 2022 May 4;21(1):66. doi: 10.1186/s12904-022-00957-w.