‘It is what it is’: Mothers’ experiences of providing bladder and bowel care to their daughters living with life-limiting conditions

Abstract

Background: Informal carers (carers) support palliative patients to live at home. Most palliative patients require bladder and bowel care (B&BC) at some point, but there is limited evidence about carers providing B&BC and how best to support them. Aim: To explore carers’ experiences of providing B&BC to life-limited young adults. Methods: Interpretative phenomenological analysis of five interviews with purposively selected carers. Results: One overarching theme, ‘It is what it is’, and three superordinate themes (‘Whatever my daughter needs’, ‘Mum knows best’, and ‘Coping with caring’) emerged. While B&BC could be challenging at times, it was not a major concern. Instead it engendered closeness and opportunities for carers to provide better care than they felt professionals could. Conclusions: This study informs how professionals should understand the support carers offer. Professionals should ensure that carer/patient dyads who wish to manage B&BC are supported to do so, and that their support needs are regularly assessed.