Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease.
Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease.
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DOI：
10.1097/mph.0000000000001682
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发表时间：
2020-03
期刊：
影响因子：
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通讯作者：
Deatrick JA
中科院分区：
文献类型：
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作者：
Reader SK;Pantaleao A;Keeler CN;Ruppe NM;Kazak AE;Rash-Ellis DL;Wadman J;Miller RE;Deatrick JA
患有镰状细胞病(SCD)的家庭通常面临更高的心理社会风险因素，而儿科SCD的研究往往更多地集中在这一领域，而不是弹性因素。本研究的目的是从照顾者的角度更好地了解SCD患者的家庭复原力。第二次定性分析的数据来自对患有SCD的青少年照顾者的混合方法研究(n=22)。定性分析涉及根据两个复原力框架进行编码，将编码类别组织成主题，并系统地将这些主题重新纳入反映家庭复原力的概念化。主题与复原力框架很好地吻合，并与家庭信仰系统和围绕SCD的意义形成(接受SCD、积极态度、宗教信仰)、家庭组织和适应(灵活性、稳定性、社会支持)以及沟通和解决问题的重要性有关。研究结果强调了评估患有SCD的青少年家庭复原力的重要性，并提出了基于家庭力量制定心理社会干预措施的潜在临床益处。
Families coping with Sickle Cell Disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n = 22). Qualitative analyses involved coding based on two resiliency frameworks, organizing coding categories into themes, and systematically reintegrating these themes into a conceptualization that reflected family resiliency. Themes aligned well with the resiliency frameworks, and related to family belief systems and meaning-making around SCD (acceptance of SCD, positive attitude, religious faith), family organization and adaptation (flexibility, stability, social supports), and the importance of communication and problem-solving. Study findings emphasize the importance of assessing resilience in families of youth with SCD, and suggest the potential clinical benefits of developing psychosocial interventions based on family strengths.