‘F*** what the doctors tell you’: Mistrust and disempowerment in fathers of children with life limiting conditions.

Postavaru, G-I., Swaby, H. and Swaby, R. (2021) ‘F*** what the doctors tell you’: Mistrust and disempowerment in fathers of children with life limiting conditions. BMJ Open, 11. ISSN 2044-6055

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Background, aim or objectives: Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers’ needs are sparse. Their voice is often diluted within a predominant mother narrative in the academic literature, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods: Meta-ethnography was used to synthesise existing qualitative studies exploring fathers’ caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results: Sixty-three studies were included. A conceptual model of fathers’ key experiences was developed. It included the following overarching concepts: ‘The paradox of support’; ‘Challenges in the caring process’; ‘Nobody thinks of men’; ‘Impact on family life’ and; ‘The fall of the curtain: an irrevocably altered world’. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment were highlighted in relation to fathers’ experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers’ experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers’ confidence in the caregiving process will be explored. Conclusions: This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.

Item Type: Article
Divisions: School of Social Science
Depositing User: Helen Swaby
Date Deposited: 07 Apr 2021 15:20
Last Modified: 15 Apr 2021 09:17
URI: https://bgro.repository.guildhe.ac.uk/id/eprint/825

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