The experiences of mothers of children with hydrocephalus in Jordan: A phenomenological study

Available literature showed that mothers of children with hydrocephalus experience many challenges. Studies that described mothers' experiences in caring for their children with hydrocephalus are limited. Understanding the mothers' experiences and challenges is essential and may enable the provision of increased knowledge and support for these mothers. The aim of this study was to explore the lived experiences of Jordanian mothers of children with hydrocephalus. A phenomenological descriptive approach was applied in this study, using semi-structured interviews with a purposive sample of 10 mothers of children with hydrocephalus. Transcribed interviews were analyzed using thematic approach. Three main themes that explored the mothers' experiences emerged from the data analysis process. The first theme was the impact of living with a child with hydrocephalus. Four subthemes comprise this theme; namely the mothers' initial response, overwhelming responsibilities, social withdrawal, and adapting: loving the baby and growing stronger. The second theme was related to the support system. Two subthemes compose this theme; the role of husband, and social support. The last theme was related to feelings of uncertainty. Two subthemes constitute this theme; concerns about the child's future and considering abortion as a solution. The mothers in this study were found to have experienced many intense feelings and to have faced many stressors and difficulties associated with the different stages of their child's illness. This study provides evidence that could be used to develop guidelines to support mothers of children with hydrocephalus. •The mothers described caregiving demands in meeting their children's needs, causing them to abandon other responsibilities•The mothers reported withdrawal from social occasions, mainly because of the offensive comments from others•The mothers reported feelings of uncertainty and concerns about the child's future, and considering abortion as a solution•Receiving support from their significant others and gaining knowledge were important factors to easing their adaptation process