Feeding after congenital heart surgery: a mixed-methods study of the caregiver experience.

OBJECTIVES: Feeding difficulties after congenital heart surgery are a common concern for caregivers of children with CHD. Insight into the intricacies of their experience is lacking. With a better understanding, healthcare providers can continue to optimize the approach and support mechanisms for these families. This study will explore the psychosocial impacts on caregivers, define barriers to care, and identify areas to improve their care. STUDY DESIGN: This mixed-methods study combined semi-structured interviews with surveys. Purposive sampling targeted caregivers of a child who underwent heart surgery and was discharged with alternative enteral feeding access. A hybrid inductive-deductive methodology was used to analyse interview transcripts. Survey scores were compared to interview content for concordance. RESULTS: Fifteen interviews were conducted with socio-demographically diverse caregivers. Feeding difficulties were often identified as their greatest challenge, with the laborious feeding schedule, sleep deprivation, and tube management being common contributors. Most caregivers described feeling overwhelmed and worried. Time-intensive feeding schedules and lack of appropriate childcare options precluded caregivers' ability to work. Barriers to care included imperfect feeding education, proximity of specialist clinics, and issues with medical supply companies. Caregiver proposals for improved care addressed easing the transition home, improving emotional support mechanisms, and intensifying feeding therapy for expedited tube removal. CONCLUSION: This study describes the psychosocial toll on the caregiver, typical barriers to care, and ideas for improved provision of care. These themes and ideas can be used to advance the family-centered approach to feeding difficulties after heart surgery.

Bullying, Peer Victimization, and Quality of Life in Pediatric Hearing Loss Patients: A Pilot Study.

OBJECTIVE: The primary objective of this pilot study is to describe the impacts of bullying and peer victimization (BPV) in children with hearing loss. STUDY DESIGN: Prospective clinical survey study. METHODS: This pilot study enrolled children between 8 and 18 years who were administered validated surveys at an outpatient clinic between July 2020 and March 2022. Surveys included health-related quality of life questionnaires (PedsQL and EQ-5D-Y), along with bullying and peer victimization questionnaires ("My Life in School" and the multidimensional peer victimization scale). Responses were scored with multivariate analysis. Clinical histories and active ICD-10 codes were also collected. RESULTS: About 105 patients were recruited with a mean age of 13.1 years (SD = 3.15) and hearing loss (n = 30) among the top otolaryngological diagnoses. When surveying patients with hearing loss, 50.0% (n = 15) actively used a hearing aid device. Children (ages 8-12 years) with hearing loss reported a significantly lower psychosocial health-related quality of life than their peers without hearing loss (P = .007), though this was not the case for adolescents (ages 13-18 years) with hearing loss (P = .099). These trends did not change significantly before or after students resumed in-person classes. Children who wore hearing aids did not report a different BPV level than their peers. CONCLUSION: In this small sample of school-aged children, any hearing loss, even with mild severity, was associated with diminished health-related quality of life; however, this was unrelated to hearing aid use. Wearing a hearing aid did not appear to be linked to higher bullying and peer victimization rates. Along with further studies on BPV with larger sample sizes, the findings in this study may help physicians counsel parents and children on the psychosocial aspects of hearing loss treatment and guide care decisions. LEVEL OF EVIDENCE: 3.