TY - JOUR
T1 - A grounded theory study on the dynamics of parental grief during the children's end of life
AU - Kochen, Eline M.
AU - Grootenhuis, Martha A.
AU - Teunissen, Saskia C. C. M.
AU - Boelen, Paul A.
AU - Tataranno, Maria-Luisa
AU - Fahner, Jurrianne C.
AU - de Jonge, Roos R.
AU - Houben, Michiel L.
AU - Kars, Marijke C.
AU - the emBRACE-working group
AU - van Berkestijn, Frédérique
AU - Falkenburg, Jeannette
AU - Frohn-Mulder, Ingrid
AU - Knoester, Hennie
AU - Molderink, Alice
AU - van de Loo, Moniek
AU - Michiels, Erna
N1 - Funding Information: This project is part of the emBRACE‐study, supported by the Netherlands Organisation for Health Research and Development [grant number 844001506]. The funders had no role in any aspect of the study or paper. Publisher Copyright: © 2023 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.
PY - 2023/5
Y1 - 2023/5
N2 - Aim: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. Methods: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. Results: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. Conclusion: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
AB - Aim: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. Methods: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. Results: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. Conclusion: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
KW - bereavement
KW - coping with grief
KW - end of life
KW - loss
KW - palliative
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85150199589&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/36806310
UR - http://www.scopus.com/inward/record.url?scp=85150199589&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/apa.16716
DO - https://doi.org/10.1111/apa.16716
M3 - Article
C2 - 36806310
SN - 0803-5253
VL - 112
SP - 1101
EP - 1108
JO - Acta Paediatrica, International Journal of Paediatrics
JF - Acta Paediatrica, International Journal of Paediatrics
IS - 5
ER -