Explaining the Care Experiences of Mothers of Children with Hirschsprung’s Disease: A Qualitative Study

摘要

Hirschsprung’s disease is a gastrointestinal anomalies that disrupts excretion. In this disease, like other chronic diseases; mothers undergo a lot of care. Considering the concept of nursing care, it is important to understand the care and its effects on the parents, the child, and care improvement. The purpose of this study is to understand the care experiences of parents of children with Hirschsprung’s disease. In this qualitative study which was performed by content analysis approach, 12 participants were selected from mothers of children with Hirschsprung’s disease who were referred to pediatric surgeries through purposeful sampling. The data collection method was a half-structured interview. All interviews were recorded and then were handwritten word by word and data were analyzed using Elo and Kyngas qualitative content analysis method. Data analysis began from the time of the first interview and in parallel to the next interviews (simultaneous analysis). At the beginning, the first-level coding was done. Data analysis led to the emergence of 3 main themes: “erosion care, socio-economic challenges, acceptance, and position-matching,” and each of the themes included several sub-themes. The results of this study showed that parents of children with Hirschsprung despaired of concern and suffering from care which these suffers included physical, psychological, social, and material dimensions, but was also associated with satisfaction and acceptance of the disease. These findings emphasize that one of the most important tasks of nurses in clinical institutions, especially in relation to these children, is to provide proper family-centered care.