Peer-reviewed article

Parental participation during children's vital sign monitoring in connection with surgery for congenital heart disease.

Sjöberg C, Zetterberg A, Åvik Persson H, Terp K, Jildenstål P · 9 Jun 2026

Abstract

Background and purpose The experience of having a child monitored for vital signs in relation to surgery for congenital heart disease can be highly stressful for parents. The opportunity to be involved in their child's care is central to parents' well-being and to their overall experience of the care provided. The purpose of this study was to explore how parents of children with congenital heart disease experience and perceive their participation during pre- and postoperative monitoring of vital signs. Design and methods A qualitative exploratory study with purposive sampling was conducted. Ten parents of children aged 3-36 months who underwent congenital heart surgery were included. All had experience of high-technology care environments during pre- and postoperative monitoring. Data was collected through semi-structured interviews between March 2024 and January 2025 and analyzed using qualitative content analysis. Results The parents' experiences and perceptions of their participation are described in one major theme striving for connection and control through participation and support in a monitored care environment. This theme is further reflected in three categories: "information as a foundation for parental participation," balancing the need for proximity and separation, and "support for family presence and participation," each with their respective subcategories. Conclusions and implications Parents' experiences of participation are influenced by the extent to which healthcare professionals involve them through tailored information and individualized adaptations. Parents require support to remain close to and assume responsibility for their child, while also feeling confident in entrusting aspects of care to healthcare professionals.