TY - JOUR
T1 - Experiences of fathers of children with a life-limiting condition
T2 - a systematic review and qualitative synthesis
AU - Fisher, Victoria
AU - Fraser, Lorna
AU - Taylor, Johanna
N1 - Funding Information:
Funding This research was funded by the National Institute for Health Research (NIHR) (award CDF-2018-11-ST2-002).
Publisher Copyright:
© 2023 BMJ Publishing Group. All rights reserved.
PY - 2023/3
Y1 - 2023/3
N2 - Background Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. Objectives To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. Methods A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. Results Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. Conclusions Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
AB - Background Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. Objectives To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. Methods A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. Results Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. Conclusions Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
KW - paediatrics
UR - http://www.scopus.com/inward/record.url?scp=85108146221&partnerID=8YFLogxK
U2 - 10.1136/bmjspcare-2021-003019
DO - 10.1136/bmjspcare-2021-003019
M3 - Review article
C2 - 34140322
AN - SCOPUS:85108146221
SN - 2045-435X
VL - 13
SP - 15
EP - 26
JO - BMJ Supportive and Palliative Care
JF - BMJ Supportive and Palliative Care
IS - 1
ER -
