Care Giver’s Experiences of Having a Child with Hydrocephalus: A Phenomenological Study at Ruharo Mission Hospital

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Abstract Background Hydrocephalus is a long-term neurologic condition, normally identified in early childhood, where there is excessive fluid in the ventricular system within the brain which results into enlargement of the head to an abnormal size. The most common cause of hydrocephalus in most patient population is infection (over 60%) typically meningitis. In Uganda, it is estimated that about 1000 to 2000 new cases of hydrocephalus occur every year with 60 percent of these are reportedly attributed to neonatal infections. The general objective was to explore care givers‘ experiences of living with a child having hydrocephalus. Methods The phenomenological descriptive study involved fifteen respondents who were purposively selected. The in-depth interviews were conducted with the aid of an interview guide and a tape recorder. Transcribed interviews were analyzed using the thematic approach. Results Care givers were experiencing financial problems, psychological problems, lack of social support and cultural constraints and stigma associated with hydrocephalus. The care givers experiences were full of life changes and coping strategies, and they used both problem and emotion focused coping strategies to deal with the challenges as compassionate and responsive care was illustrated by the participants. Conclusion The study discovered that having a child with hydrocephalus is challenging and frustrating in terms of financial, physical, social, and psychological experience. Therefore, these findings are essential for counselling care givers, families and communities affected by hydrocephalus. In this context, attention should be targeted to families and communities to reduce stigma and isolation faced by the affected.

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