Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.
Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.
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DOI：
10.1016/j.jpainsymman.2021.06.011
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发表时间：
2021-12
影响因子：
4.7
通讯作者：
Rosenberg AR
中科院分区：
文献类型：
--
作者：
Bogetz JF;Trowbridge A;Lewis H;Shipman KJ;Jonas D;Hauer J;Rosenberg AR
当孩子住院时，患有严重神经功能障碍（SNI）儿童的父母经常面临高风险的医疗决策。这些决定涉及技术/手术、护理目标/预先护理计划或护理过渡。本研究描述SNI患儿家长在决策过程中的体验。符合条件的参与者是在单一三级儿科中心面临决定患有SNI的儿童入住急性或重症监护病房的父母。在2019年8月至2020年2月期间，家长完成了1:1的半结构化访谈和简短调查。从儿童的电子健康记录中提取人口统计信息。一组具有定性方法专业知识的姑息治疗和复杂护理研究人员使用主题内容分析来制定结果。25位家长参与了调查。大多数儿童患有先天性/染色体SNI疾病（n=13, 65%）， bb50亚专科（n=14, 61%）和慢性技术援助（n=25, 100%）。68% （n=17）是母亲，100%被认为是孩子的主要决策者。家长的回答包括3个主题：1)我们的角色和行动；2)我们面临的压力和挑战；3)我们的意义和目的。答复突出了父母的决策努力和父母对其子女需要的倡导和警惕的普遍性。尽管如此，在医院里，家长们常常感到自己的意见被忽视、被低估。在住院期间，当SNI患儿的父母经常面临高风险的医疗决策时，需要采取干预措施来支持父母，并确保他们在应对孩子的医疗需求和系统挑战时感到被倾听和被重视。本研究通过对SNI患儿家长在医院面临决策的定性研究，不仅揭示了家长的需求和压力，还揭示了家长体验到的意义和目的。在父母扮演重要角色的过程中，需要一些工具来让父母的声音被听到，并为他们的孩子发声。
Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. This study describes the experiences of parents of children with SNI during decision-making. Eligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019-February 2020. Demographic information was extracted from the child’s electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results. 25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n=13, 65%), >5 subspecialists (n=14, 61%), and chronic technology assistance (n=25, 100%). 68% (n=17) were mothers and 100% identified as being their child’s primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents’ advocacy and vigilance regarding their child’s needs. Despite this, parents often felt unheard and undervalued in the hospital. During hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child’s medical needs and system challenges. This qualitative study of parents of children with SNI facing decision-making in the hospital revealed not only the demands and stresses but also the meaning and purpose parents experience. As parents navigate their crucial roles, tools are needed to empower parents to be heard and to advocate for their child.
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影响因子：
2.4
作者：
Feudtner C;Villareale NL;Morray B;Sharp V;Hays RM;Neff JM
通讯作者：
Neff JM
影响因子：
26.1
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Berry, Jay G.;Hall, Matt;Hall, David E.;Kuo, Dennis Z.;Cohen, Eyal;Agrawal, Rishi;Mandl, Kenneth D.;Clifton, Holly;Neff, John
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