The Transitional Experience of Family Caring for Their Child With a Tracheostomy
The Transitional Experience of Family Caring for Their Child With a Tracheostomy
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DOI：
10.1016/j.pedn.2016.02.002
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发表时间：
2016-07-01
影响因子：
2.4
通讯作者：
Carroll, Diane L.
中科院分区：
文献类型：
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作者：
Callans, Kevin Mary;Bleiler, Carolyn;Carroll, Diane L.
目的：这项定性研究的目的是描述在从医院到家庭的过渡过程中，由于呼吸道受损而进行气管切开照顾孩子的家庭经历，并确定家庭要求成为成功的照顾者的支持类型。设计和方法：本研究采用定性描述性设计，以焦点小组回答半结构化访谈问题。调查人员遵循基本内容分析，使用三人共识对描述性数据进行解释。结果：18名家庭成员参与。四个主题出现了：“这不是我计划的生活：接受新的现实”；“不要把医院当成你的家；不要把你的家当成医院”；“照顾者与那些表现出能力、自信、用心和耐心的提供者打交道。”以及“参与者重视回馈和帮助他人的机会。”结论：家庭照顾者角色的成长导致个人转变，表现在信心的增强，从孩子那里找到喜悦，成为孩子的代言人，成为他人的资源。家庭成员描述了向“负责”的过渡，与提供者的关系，以及能够倡导在家里获得他们所需的资源。实践影响：关系与住院期间向家庭传授技能一样重要。家庭成员认为与护理提供者保持联系具有相当大的价值。此外，还希望与其他开始类似旅程的家庭分享他们的经验。参与者要求采取一种支持方式，包括有能力的提供者、用于技能培训的网络视频教育、家庭与家庭的联系，以及出院后继续提供家庭小组支持。(C)2016 Elsevier Inc.保留所有权利。
Purpose: The purpose of this qualitative study was to describe the family experience of caring for their child with a tracheostomy due to a compromised airway during the transition from hospital to home, and to identify types of support that families request to be successful caregivers.Design and methods: This study used a qualitative descriptive design with focus groups to answer semi-structured interview questions. The investigators followed basic content analysis to interpret descriptive data using three-person consensus.Results: Eighteen family members participated. Four themes emerged: "This is not the life I had planned: coming to accept the new reality;" "Don't make the hospital your home; don't make your home a hospital;" " Caregivers engage with providers that demonstrate competence, confidence, attentiveness, and patience;" and " Participants value the opportunity to give back and help others."Conclusions: Growth in the family caregiver role leads to personal transformation demonstrated by increased confidence, finding joy from their child, becoming an advocate for their child, and a resource for others. Family members described the transition to being 'in charge,'the relationship with the provider, and being able to advocate for getting the resources they needed in the home.Practice implications: Relationships are as critical as teaching skills to families during hospitalization. Family members see considerable value in connecting with care providers. In addition, there is a desire to share their experience with other families that are beginning a similar journey. Participants requested a support approach that included competent providers, Web-based video education for skills training, family-to-family connection, and continued family group support after discharge. (C) 2016 Elsevier Inc. All rights reserved.