"I think her life got so much better": parents' perceptions of children's quality of life following treatment of tracheomalacia with aortopexy.

Abstract

Background: Aortopexy is a procedure to reduce pressure on the trachea in children with severe tracheomalacia. Health-related quality of life (HRQoL) has not been studied in children who have undergone aortopexy; we aimed to explore parents' perceptions of their child's HRQoL before and after aortopexy.

Methods: Parents of children < 18 years who underwent aortopexy at a quaternary specialist centre were purposively sampled and invited to participate in a semi-structured interview. Data were analysed using reflective thematic and content analysis.

Results: Eight interviews (23-56 min) were completed with parents whose children were aged 1.9-12.1 years. HRQoL is explored through themes: a challenging diagnosis, lifechanging, and an understanding of limitations. Parents struggled to obtain a diagnosis of tracheomalacia while their child experienced serious symptoms. Aortopexy was seen as life-saving and allowed a return to family life. Airway safety, having their health and achieving a better quality of life were important outcomes of the procedure.

Conclusion: Quality of life following aortopexy was perceived to be greatly improved. Children still struggled in aspects of their life, however families worked within their child's limitations, appreciating the life-saving nature of the intervention, and accepting the complexities of their child's comorbidities. Holistic interventions are important for those at risk of poor HRQoL outcomes.