98%
921
2 minutes
20
This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from nine families) whose child had a new tracheostomy were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child's life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and how they reframed their perspectives about their child's tracheostomy. Parents' resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model that explains this process of change, this results in transferable knowledge, useful for understanding and explaining the experience of other parents and families.
Download full-text PDF |
Source |
---|---|
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11607837 | PMC |
http://dx.doi.org/10.1177/13674935231169409 | DOI Listing |
Pediatr Pulmonol
September 2025
Department of Pediatrics, Division of Pediatric Allergy, Immunology and Pulmonary Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Background: Children with tracheostomies require skilled medical care performed by trained caregivers or home health nursing (HHN). HHN services are often limited, resulting in increased caregiver responsibilities. We aim to evaluate HHN availability, healthcare utilization, and mortality in tracheostomy dependent children, pre and post-COVID-19 pandemic.
View Article and Find Full Text PDFAm J Phys Med Rehabil
August 2025
Center for Neuromuscular Disease Child Health and Development, National Hospital Organization, Hokkaido, Medical Center, Japan.
Introduction: Duchenne muscular dystrophy (DMD) management often results in tracheostomies or palliative care deaths.
Methods: Two centers, A in the U.S.
Otolaryngol Head Neck Surg
September 2025
Otolaryngology-Head and Neck Surgery, College of Medicine, Hershey, Pennsylvania, USA.
Objective: Decannulation is a critical milestone in functional recovery after tracheostomy, but standardized guidelines are lacking. This study examined factors associated with tracheostomy decannulation success, comparing hospital utilization, adverse events, and survival outcomes between decannulated and non-decannulated patients.
Study Design: Retrospective, observational study.
World J Clin Pediatr
September 2025
Hospital Pediatry, Saint-Petersburg State Pediatric Medical University, Saint-Petersburg 194100, Sankt-Peterburg, Russia.
Background: Mucopolysaccharidosis type II (MPS II) is a chronic inherited disease with multiorgan involvement, a progressive course, and restricted life expectancy.
Aim: To evaluate the predictors of fatal outcomes in MPS II patients.
Methods: In the retrospective cohort study, the clinical, laboratory data and enzyme replacement therapy (ERT) (84.
Folia Med (Plovdiv)
August 2025
Medical University of Plovdiv, Plovdiv, Bulgaria.
Over the years, pediatric tracheotomy has evolved significantly, and ongoing debates regarding its indications, timing, surgical techniques, and decannulation protocols persist. In most cases, management decisions are based on the medical team's clinical experience and existing literature, as there are no universally accepted guidelines.
View Article and Find Full Text PDF