Objective

Pediatric tracheostomy is a challenge in otolaryngology practice and it is associated with greater morbidity and mortality than in adults; hence, constant vigilance by the designated family caregiver is critical. This study was designed to assess the impact of on quality of life of caregivers in a homecare setting as a result of the presence of child with a tracheostomy.

Methods

This was a combined retrospective and prospective cohort study with caregivers of children younger than 16 years who had undergone a tracheostomy, had been discharged home with a tracheostomy tube and completed 6 months of domiciliary tracheostomy care. The consenting primary caregivers were assessed for their quality of life based on the PedsQL v 4.0 questionnaires across various domains.

Results

We identified the primary caregivers of 85 children who had undergone a tracheostomy during the study period. The children's median age was 3.5 years (range, 9 months to 14 years). The mean caregiver health-related quality of life (HRQOL) score was 59.3, the mean family functioning score was 62.8, and the mean total family impact score was 54.7 with relative deficits seen in caregiver's social functioning (56.9) and emotional functioning (53.2). Good or average quality of physical and social function was seen among 74 % and 65 % of caregivers respectively while only 55 % were reported having good or average emotional function. Emotional disturbance, interfering with everyday family activities, and sleep disturbance were the major concerns among caregivers.

Conclusion

The biopsychosocial consequences of caring for a child with a tracheostomy are profound for the family, affecting the quality of life of caregivers and adding to the emotional and social burden of the child's family.

中文翻译：

---

小儿气管切开术对照顾者生活质量的影响

客观的

小儿气管切开术是耳鼻喉科实践中的一个挑战，与成人相比，它的发病率和死亡率更高；因此，指定的家庭照顾者时刻保持警惕至关重要。本研究旨在评估家庭护理环境中因存在气管切开术儿童而对护理人员生活质量的影响。

方法

这是一项联合回顾性和前瞻性队列研究，对 16 岁以下儿童的照顾者进行了气管切开术，出院时使用了气管切开插管并完成了 6 个月的家庭气管切开术护理。根据跨各个领域的 PedsQL v 4.0 问卷，对同意的主要照顾者的生活质量进行了评估。

结果

我们确定了在研究期间接受气管切开术的 85 名儿童的主要照顾者。儿童的中位年龄为 3.5 岁（范围为 9 个月至 14 岁）。平均看护者健康相关生活质量 (HRQOL) 得分为 59.3，平均家庭功能得分为 62.8，平均总家庭影响得分为 54.7，看护者的社会功能 (56.9) 和情绪功能 (53.2) 存在相对缺陷. 分别有 74% 和 65% 的照顾者的身体和社会功能质量良好或平均，而只有 55% 的人报告有良好或平均的情绪功能。情绪障碍、干扰日常家庭活动和睡眠障碍是护理人员的主要担忧。

结论

照顾气管切开术儿童的生物心理社会后果对家庭来说意义重大，会影响照顾者的生活质量，并增加儿童家庭的情感和社会负担。