Background Little is known about the respective experience of fathers and mothers within couples when managing their child's long-term medical condition. This study therefore aimed to obtain and compare fathers' and mothers' accounts of managing long-term kidney conditions.
Methods Qualitative study involving individual then joint semi-structured interviews with 14 couples (biological fathers and mothers of 15 children whose care is managed at a specialist unit). Interviews were digitally recorded, transcribed and analysed using Framework Analysis. Transcripts within and across couples were compared.
Results Fathers and mothers made a significant contribution to management and a key theme identified was ‘developing skills’ in: information processing, sharing/negotiating caregiving, restraining children, adapting to treatment regimens and communicating. Although skill development was often a challenging and uncertain process, both fathers and mothers wanted to and did participate in caregiving; they often negotiated this with each other to accommodate caring for other children, paid employment and to provide mutual practical and emotional support. Developing skills in holding their child for procedures and treatments was a major concern, but it was fathers who assumed the ‘protector’ role and worried more about their child's long-term health and well-being, while mothers concerned themselves more with current clinical issues and maintaining relationships with professionals. Expressing appreciation for fathers' and mothers' skill development may promote good ‘working relationships’ between professionals and both parents over the many years of the trajectory.
Conclusion Developing skills for home-based caregiving of long-term conditions is a challenging and uncertain process. Both parents often participate in caregiving, and the findings reported here may help professionals decide how best to support both parents in their home-based caregiving.