How do parents undergoing dialysis perceive the support provided by their children? A mixedmethods study to better identify young carers

Abstract

Background: Young carers are aged between 6 and 25 and regularly provide support to a sick relative. No study has yet focused on these young people in the context of parental dialysis. The aim of this study was to explore how parents on dialysis experience the support provided by their children, and to compare the experiences of parents undergoing dialysis at home and those treated in medical facilities.

Method: Thirty parents on dialysis (19 at home, 11 in facilities) completed a questionnaire (sociodemographic and medical information, autonomy in activities, quality of life, and support provided by their children). Fifteen parents also took part in semi-structured interviews.

Results: Overall, parents on dialysis reported low levels of support from their children, whether in terms of emotional support, household tasks, instrumental assistance, or personal care. Parents receiving dialysis outside the home perceived higher levels of support than those receiving dialysis at home. The interviews helped to clarify the observed differences and highlighted the specific forms of support provided by children of parents undergoing home dialysis. Parents also reported negative emotions among their children (anxiety, sadness) as well as the development of psychosocial skills.

Conclusion: These results underline the importance of paying attention to the children of dialysis patients and the support they may provide. Further studies are needed to better understand the underlying family dynamics and to explore the children’s perspective.