Children with tracheostomy: A qualitative exploration of parent’s experiences and needs

Tanja Østergaard Irlind, MPH, clinical nursespecialist RN 1
Camilla Grauslund Bredahl, MSc, headnurse, RN 2
Ingelise Hvidt, MSc, clinical nursespecialist RN 2
Mona Ring Gätke, MD, phD 1
Lone Graff Stensballe, professor, MD, phD 2, 3

1 Denmark Department of Respiratory Center East, Copenhagen University Hospital, Denmark
2 The Child and Adolescent Clinic, The Danish National University Hospital,
3 Department of Clinical Medicine, University of Copenhagen

Abstract
Background. The number of children aged 0-15 with tracheostomies is increasing, and their treatment processes are complex. Research indicates significant negative consequences for families with a child with a tracheostomy. The purpose of this study was to explore parents' experiences and needs from the decision about the tracheostomy to life at home.
Methods. Data were collected in Eastern Denmark, where semi-structured interviews were conducted individually or in dyads with 13 parents of seven children with tracheostomies, who are associated with the respiratory center in the Capital Region. A qualitative descriptive method was used, and the empirical data were analyzed using thematic analysis.
Results. Seven themes emerged: 1. The child with a tracheostomy: Prioritizing the child's needs and well-being. 2. Communication: Lack of information and shared decision-making. 3. The treatment process: Lack of parental involvement in the treatment process. 4. Transitions between units: Lack of coordination and collaboration between units. 5. Navigator: The treatment process requires a navigator. 6. Trained personal caregivers: An intrusion into privacy. 7. The Family: The relationship, siblings, and relatives are under pressure.
Conclusion. This study provides valuable insights into parents' experiences with tracheostomy care for children in Eastern Denmark. Parents of children with tracheostomies seek clear information and involvement. They face challenges throughout the treatment process, as well as after discharge from the hospital. Parents often feel stressed by the trained personal caregiver arrangement and seek more flexibility and support. There is a need for support for family well-being and planning of treatment and care. Further research is necessary to deepen the understanding of this complex treatment environment and to identify effective intervention strategies.
Clinical relevance. This study highlights the clinical relevance of understanding parents' experiences and needs regarding children with a tracheostomy, a subject with significant implications for the entire family. The study identifies areas where guidelines and interventions could be developed to improve nursing care and clinical practice in supporting families with a child who has a tracheostomy.