A Descriptive Qualitative Study of Home Care Experiences in Parents of Children with Tracheostomies

Abstract

Purpose: The number of pediatric patients who require a long-term tracheal tube at home is gradually increasing. Studies have demonstrated that the parents of these children report high levels of stress, anxiety and other negative emotions as early as shortly after discharge from the hospital. The purpose of this study is to describe the home care experiences of parents of children with tracheostomies during the transition from hospital to home in China to more effectively address their needs.

Design and methods: This study used a qualitative descriptive design and face-to-face interviews with semi-structured questions to learn about the home care experiences of parents whose children had undergone a tracheostomy.

Results: Thirteen parents were recruited from the otorhinolaryngology outpatient ward of Xinhua Hospital in Shanghai, China. These parents described three categories of home care experiences: "direct care overload," "psychological overload," and "personal growth." Subcategories included parental "role change," "from helplessness to skillfulness," "lack of professional support," "anxiety and depression," and "social isolation." They also reported personal growth, which was mainly reflected by "changing their perspectives" and "developing potential."

Conclusion: Although the findings of this study indicate that the physical and psychological overload reported by parents of children with tracheostomies during home care is inevitable, a better understanding of parents' caring experiences among professionals may facilitate clinical practice and promote continued community nursing care in China.

Practice implications: Parents hope to receive systematic education during hospitalization, including web-based video education for skills training after discharge. In addition, parents desire public recognition so that they can participate in normal family and community activities.

Keywords: Children; Experiences; Parents; Tracheostomy.