Bereaved parents and siblings offer advice to health care providers and researchers.
Bereaved parents and siblings offer advice to health care providers and researchers.
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DOI：
10.1097/mph.0b013e31828afe05
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发表时间：
2013-05
期刊：
影响因子：
--
通讯作者：
Gerhardt CA
中科院分区：
文献类型：
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作者：
Steele AC;Kaal J;Thompson AL;Barrera M;Compas BE;Davies B;Fairclough DL;Foster TL;Jo Gilmer M;Hogan N;Vannatta K;Gerhardt CA
在儿童死于癌症后，如何通过获得他们对医疗保健提供者和研究人员的建议来确定如何改善对家庭的护理。在孩子死后3-12个月(M=10.4，SD=3.5)，从美国和加拿大的三家医院的癌症登记处招募了有幸存兄弟姐妹(8-17岁)的家庭。数据是在家里收集的。参与者(N=99)包括来自40个家庭的36名母亲、24名父亲和39名兄弟姐妹。每个参与者都完成了一次定性访谈，访谈内容经过录音、转录和编码。五个主要主题包括：(A)加强与医疗队的沟通；(B)给予更多同情关怀；(C)增加获得资源的机会；(D)进行中的研究；以及(E)给予表扬。这五个主题交织在一起的是护理的连续性这一次主题。许多与会者对癌症儿童得到的护理感到满意，但其他人指出了需要改进的方面，特别是医疗沟通和连续性护理。需要进行更多的研究，以便为干预措施提供信息，以改善对患有限制生命条件的儿童的家庭的服务。
To determine how to improve care for families by obtaining their advice to healthcare providers and researchers after a child’s death from cancer. Families with a surviving sibling (ages 8-17) were recruited from cancer registries at three hospitals in the United States and Canada 3-12 months (M = 10.4, SD = 3.5) after the child’s death. Data were collected in the home. Participants (N = 99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, as well as (e) offering praise. Interwoven within the five themes was a subtheme of continuity of care. Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.