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

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

Postavaru GI; Swaby H; Swaby R

BMJ Open

2021

Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care

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, 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 encompassed 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 described 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.

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