A Qualitative Study on the Perceptions and Experienced Problems of Mothers Having Children with Congenital Hydrocephalus

Abstract

Introduction : Management and caring of child with congenital hydrocephalus is a very complex process and a great deal of challenge for mothers as the primary care giver. Aim of the study : To evaluate the mothers’ perceptions and problems those were experienced in the congenital hydrocephalus treatment process. Materials and Methods : Qualitative, Phenomenological study was conducted on the Mothers whose children were admitted and undergone shunt placement/revision for the treatment of congenital hydrocephalus condition in the Neurosurgery and Neuro-trauma wards of Dr. Ram Manohar Lohia Hospital, New Delhi, India. 18 mothers were recruited with non-probability-Purposive sampling method. Written informed consent was taken. Participant information anonymity and confidentiality ensured. Face-to-face in-depth interview was conducted with each mother. Data collected from March 2019 to July 2019.Data was collected using a semi-structured questionnaire (Topic guide) prepared by the researcher. One to one in-depth interview was conducted with each mother separately, for approximate duration of 45–60 min in a separate room at two different occasions by the two independent investigators using the same topic-guide. Interviews conducted till the data get saturated. Interviews were recorded with permission. Voice recordings were transcribed into similar and differing written responses. It was subjected to read many times and inferences were drawn from the conversation. To establish dependability, the inferences drawn were given to four experts. The consensus was taken. Thematic analysis was done. Results : Average age of 18 mothers participated in the study was 30 years. children with hydrocephalus had an average age of 15.5 months. Majority were male children. The most common reaction to receiving their child’s diagnosis was shock and the fear of brain damage and uncertainty about their ability to cope with this condition. Most of the mothers were blamed by their in-laws for not taking proper self-care during antenatal period and mothers felt guilt for the same. Most of the mothers (80%) expressed that shunt blockage could be life threatening. Majority of mothers (90%) expressed that they faced great problems in meeting hygienic needs and head holding of the child, also feeding problems and shunt care. Majority of the mothers(95%) expressed that they had changes in their social lives due to fear of getting stigmatised from relatives, friends and society and also getting verbal abused from husband and threat of divorce. Education and care of the sibling child was adversely affected and sibling felt neglected. Mothers experienced financial problems and family members, held them only accountable for taking care of the child at home as well as in hospital. As per analysis about 60% of the mothers were experiencing symptoms of psychological distress. Conclusion : Mothers being the primary-caregiver become the main victim of physical and psychological distress while taking care of child with this long-term chronic condition like congenital hydrocephalus. Gender discrimination—a new issue in the context of getting treatment for these congenital conditions in which male babies are preferred. Nurses should acquire appropriate knowledge and skills necessary for antennal natal counselling which also incorporates congenital anomalies issues. Nurse should be aware of the various concerns of mothers having children with shunted hydrocephalus and how to solve these issues with their educative, counselling and supportive and rehabilitative roles.