Coco Megan, Henderson Wendy A, Park Crystal L, Starkweather Angela R
School of Nursing, University of Connecticut, Storrs, Connecticut, USA.
Department of Psychological Sciences, University of Connecticut, Storrs, Connecticut, USA.
Res Nurs Health. 2023 Jun;46(3):299-312. doi: 10.1002/nur.22310. Epub 2023 Apr 10.
Children, adolescents, and young adults living with sickle cell disease (SCD) often experience an unpredictable and complex disease course. Although there is a growing literature on the lived experience of patients with SCD, qualitative syntheses are lacking. Therefore, a qualitative metasynthesis was conducted to inform care and potential interventions. Noblit and Hare's phases of metaethnographic research were used to guide the synthesis of qualitative data. Data extracted from the identified studies were directly compared through reciprocal translation. The 12 studies that met inclusion criteria for the meta-synthesis included 177 participants ranging in age from 6 to 35 years old from six different countries. The authors identified three key metaphors: Ubiquitous Intrusion, Coping to Learn: Learning to Cope, and Part of the Whole. The metaphors were elucidated by three essential concepts that underlie the experience of children, adolescents, and young adults living with SCD: (1) recognition of SCD implications, (2) identifying ways to balance responsibilities, and (3) positioning oneself to thrive with SCD. The metaphors and essential concepts support the global theme of "Growing Beyond SCD." The metasynthesis revealed the shared complexity of living with SCD among children, adolescents, and young adults from diverse cultures in which the yearning for a normal life drove learning to adapt and manage SCD with their support network. The key metaphors may be used to guide development of nursing interventions designed to promote self-acceptance, coping, and adaptation skills among children, adolescents, and young adults that will help them to flourish while managing SCD as a chronic condition.
患有镰状细胞病（SCD）的儿童、青少年和青年常常经历不可预测且复杂的病程。尽管关于SCD患者生活经历的文献越来越多，但缺乏定性综合研究。因此，开展了一项定性元综合研究以指导护理和潜在干预措施。采用诺布利特和黑尔的元民族志研究阶段来指导定性数据的综合。通过相互翻译直接比较从已确定研究中提取的数据。符合元综合纳入标准的12项研究包括来自六个不同国家的177名参与者，年龄在6至35岁之间。作者确定了三个关键隐喻：无处不在的侵扰、应对中学习：学会应对、整体的一部分。这些隐喻由三个基本概念阐明，这三个概念构成了患有SCD的儿童、青少年和青年经历的基础：（1）认识SCD的影响，（2）确定平衡责任的方法，（3）使自己在患有SCD的情况下茁壮成长。这些隐喻和基本概念支持“超越SCD成长”这一全球主题。元综合揭示了来自不同文化背景的儿童、青少年和青年在患有SCD时共同面临的复杂性，即对正常生活的渴望促使他们在支持网络的帮助下学习适应和管理SCD。这些关键隐喻可用于指导护理干预措施的制定，旨在促进儿童、青少年和青年的自我接纳、应对和适应技能，帮助他们在将SCD作为慢性病进行管理的同时蓬勃发展。
