Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

Abstract

Aim

To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions).

Design

Systematic review and metasynthesis.

Methods

Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research.

Data Sources

A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options.

Results

Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: ‘Being shattered in the perception of fatherhood’, ‘Establishing a new normal’ and ‘Striving to be acknowledged as a part of the caring team’.

Conclusion

Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences.

Impact

The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine.

Reporting Method

Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework.

Patient or Public Contribution

No patient or Public Contribution.