Assessing the perceptions of mothers raising children with trisomy 18 requiring medical care at home

Abstract

 In this study, we aimed to assess the perceptions of mothers raising children with trisomy 18 requiring medical care at home. We conducted semi-structured interviews with six mothers. A qualitative descriptive data analysis identified five categories of perceptions, namely: “Fulfillment from normal daily life with family despite uncertainties about the course”, “Relief gained through peers and social connections”, “Difficulties with advanced medical care for complications”, “Psychological burden of acute deterioration of life-threatening or worsening condition”, and “Suffering due to inadequate social resources and medical provision for children with trisomy 18”. Subsequently, we suggested several support measures. These included ensuring that fathers share in the joy of caregiving at home; providing information and support so that social connections can be maintained; providing respite support, social resources, and medical technical assistance; providing practical skills, means of communication in emergency situations, and emotional support to help mothers to continue caregiving at home; and increasing opportunities for discussion to ensure that treatment is acceptable to the entire family. These supports are expected to contribute to reducing the burden on mothers raising children with trisomy 18 requiring medical care at home.