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

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.