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.
Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study.
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Contributors VF, LF and JT conceived the study and VF developed the protocol with regular input from LF and JT. VF conducted the electronic searches, screening, data extraction and quality appraisal. VF conducted the thematic synthesis with regular input from LF and JT. VF drafted the manuscript which was approved by LF and JT.
Funding This research was funded by the National Institute for Health Research (NIHR) (award CDF- 2018-11-ST2-002).
Disclaimer The funder had no involvement in study design, data analysis, interpretation, writing the manuscript or submitting for publication.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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