Department of Cardiology, Boston Children's Hospital, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Pediatr Pulmonol. 2021 Jul;56(7):2274-2283. doi: 10.1002/ppul.25355. Epub 2021 Mar 15.
Decision-making around tracheostomy placement and chronic respiratory support in children is complicated. Families often seek support and advice from outside the medical care team, including from social media. We undertook this study to characterize the content and nature of online resources created and managed primarily by caregivers of children living with tracheostomy and chronic mechanical ventilation.
DESIGN/SETTING: We used a "grey literature" search methodology to identify internet resources created by caregivers of children with tracheostomy. We included only publicly available, nonindustry associated, English language, North American websites updated at least once in 2019. We then applied inductive content analysis to establish central themes, patterns and associations.
MEASUREMENTS/MAIN RESULTS: We identified six blogs/forums that met our search criteria. We identified four main themes: (1) Uncertainty, (2) Lived experience-wants, needs, and emotions, (3) Seeking context and meaning, and (4) Advice/information sharing/support. Two patterns of coping were identified on the basis of the relationships between codes. The "Acceptance pathway" is associated with a sense of self-actualization, mastery, satisfaction, return to normalcy, and ultimately acceptance. The "Resignation pathway" is associated with a sense of lack of control, frustration, burnout and stress, persistent lack of normalcy, and resignation to the tracheostomy as a negative but necessary outcome.
Caregivers often come to see themselves as experts in the care of children with tracheostomy, though many still express ambivalence about their knowledge and skills. Those early in the experience express a desire for community and can potentially benefit from online resources.
儿童气管切开术和慢性呼吸支持的决策很复杂。家庭通常会向医疗团队以外的人寻求支持和建议，包括社交媒体。我们进行这项研究的目的是描述主要由带管儿童及其照顾者创建和管理的在线资源的内容和性质，这些资源与慢性机械通气有关。
设计/设置：我们使用“灰色文献”搜索方法来识别由带管儿童的照顾者创建的互联网资源。我们只包括公开的、非行业相关的、英语的、至少在 2019 年更新过一次的北美网站。然后，我们应用归纳内容分析来确定中心主题、模式和关联。
测量/主要结果：我们确定了符合我们搜索标准的六个博客/论坛。我们确定了四个主要主题：（1）不确定性，（2）生活体验——需求、需求和情绪，（3）寻求背景和意义，（4）建议/信息共享/支持。根据代码之间的关系，确定了两种应对模式。“接受途径”与自我实现、掌握、满足、恢复正常和最终接受感相关。“放弃途径”与缺乏控制、沮丧、倦怠和压力、持续缺乏正常性以及对气管切开术的无奈感相关，这种无奈感被认为是一种消极但必要的结果。
照顾者通常会将自己视为带管儿童护理方面的专家，尽管他们仍对自己的知识和技能持矛盾态度。那些刚接触这种情况的人表达了对社区的渴望，并可能从在线资源中受益。
