A mixed methods exploration of the health and caregiving experiences of fathers of children with a life-limiting condition.

Abstract

Background: Fathers of children with a life-limiting condition are underrepresented in the literature. We know little about their experiences of caregiving, the impact of this on their health and their support needs.

Aim: To explore the health and caregiving experiences of fathers of children with a life-limiting condition, both quantitatively and qualitatively.

Design: A convergent mixed methods design comprised of (1) a quantitative survey and (2) semi-structured qualitative interviews prioritising the qualitative data.

Setting/participants: Thirty-two fathers of children with a life-limiting condition took part in the survey. They were recruited via social media, three UK children's hospices and one UK children's hospital. Twelve of these fathers went on to take part in a qualitative semi-structured interview.

Results: Thematic analysis resulted in three themes: (1) Everyday precarity; (2) cumulative distress; past, present and future; (3) the scope and severity of the impact of caregiving on fathers; a lack of understanding from others. In the survey, fathers reported high levels of carer strain and distress, alongside high levels of family wellbeing and positive appraisals of caregiving.

Conclusion: Fathers' extensive and overwhelming daily routines are inflexible and unstable, leading to multidimensional precarity and a sense of overwhelm. Current care provision does not address the unique and fluctuating support needs of fathers, which are linked to those of their child, and need to be understood in the context of both parenting and caregiving. A process capable of identifying and addressing fathers' support needs to be established.