"I think her life got so much better": parents' perceptions of children's quality of life following treatment of tracheomalacia with aortopexy.
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| Title: | "I think her life got so much better": parents' perceptions of children's quality of life following treatment of tracheomalacia with aortopexy. |
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| Authors: | Brockbank, Bethany L. (AUTHOR), Dewar, Greg S. J. (AUTHOR), Hewitt, Richard J. D. (AUTHOR), Butler, Colin C. R. (AUTHOR), Wray, Jo (AUTHOR) |
| Source: | Quality of Life Research. Apr2025, Vol. 34 Issue 4, p1045-1058. 14p. |
| Subjects: | Quality of life, Children's health, Treatment effectiveness, Tracheotomy, Holistic nursing, Parent attitudes, Operative surgery |
| 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. [ABSTRACT FROM AUTHOR] |
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| Database: | Psychology and Behavioral Sciences Collection |
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| 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. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 09629343 |
| DOI: | 10.1007/s11136-024-03888-6 |
