Purpose: As the group of technology-dependent children with long-term tracheostomy continues to expand, we aimed to explore parents' lived experience of everyday life with a child dependent on long-term tracheostomy.
Materials and methods: Six parents of four children were interviewed and the transcripts analyzed using Giorgi's descriptive phenomenology.
Results: All aspects of everyday life, parent-child interaction, and interaction with the surrounding outside world were affected by technology dependency. Parents played an active role by acting both as a protective shield between the outside world and the child and as an enabling bridge to help the child interact with the outside world. The active and involved role of parents is interwoven in all aspects, levels, and directions of interaction and everyday life. The lived experiences can be described in four themes: caution and risk awareness due to technology, meeting the demands of technology dependence, strained and constrained by technology dependence, and conflicted feelings about technology dependence.
Conclusions: Long-term tracheostomy and technology-dependency affect and shape everyday life. Practical implications from the study suggest that re-design and co-design between all stakeholders involved are needed to support parental well-being, coping and enhance patient safety for this growing population and their parents.
Keywords: Tracheostomy; child; everyday life; interaction; neonatology; parent; pediatrics.
Long-term tracheostomy, technology, and technology-dependency affects everyday interaction and life for families and should therefore receive attention in rehabilitation for children with long-term tracheostomy.Rehabilitation should include support for parents as it is needed to address the straining experiences in everyday life, including emotional support and practical organization of home care nursing/assistance and medical care.Healthcare needs to adopt a broad and inclusive model of disability that also includes life-sustaining technology-dependency to address the needs of families with children with long-term tracheostomy.