Department of Emergency Medicine, Institute for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, Illinois 60611, USA.
J Natl Med Assoc. 2010 Nov;102(11):1033-41. doi: 10.1016/s0027-9684(15)30730-6.
Sickle cell disease (SCD) is associated with serious comorbidities resulting in a shortened lifespan, and many clients suffer from frequent pain episodes. However, others successfully manage their disease in the outpatient setting without the need for frequent health care utilization. The purpose of this project was to describe specific strategies used by adult clients with sickle cell disease to achieve optimal physical health.
A Best Self-management Practices workshop was held in conjunction with the Sickle Cell Disease Association of America meeting. A panel discussion was organized; adult clients were recruited for participation. The workshop was divided into 3 topics: complementary and alternative medicine, psychosocial issues, and work/education/training. Panel discussions were audiotaped, transcribed, and analyzed using the constant comparative method.
Seven adult patients with sickle cell disease and 1 social worker participated. The following themes emerged: self-awareness, emotional support, career selection and success factors, nutrition, advocacy, knowledge, physical, and complementary and alternative medicine. Self-awareness was the most reported strategy with emphasis on journaling and body awareness. Emotional support included spiritual support, friends, family, professional counseling, and spiritual support. A variety of suggestions were discussed related to the other themes. All participants used many strategies daily to maintain optimal health.
镰状细胞病（SCD）与严重的合并症相关，导致寿命缩短，许多患者经常经历疼痛发作。然而，也有一些患者在门诊环境中成功地管理疾病，无需频繁利用医疗保健。本项目旨在描述成年镰状细胞病患者实现最佳身体健康所采用的具体策略。
在与美国镰状细胞病协会会议同时举行了最佳自我管理实践研讨会。组织了小组讨论，招募成年患者参与。研讨会分为 3 个主题：补充和替代医学、心理社会问题以及工作/教育/培训。小组讨论被录音、转录，并使用恒定性比较方法进行分析。
7 名镰状细胞病成年患者和 1 名社会工作者参与了研究。出现了以下主题：自我意识、情感支持、职业选择和成功因素、营养、倡导、知识、身体和补充与替代医学。自我意识是报告最多的策略，重点是日记和身体意识。情感支持包括精神支持、朋友、家人、专业咨询和精神支持。还讨论了与其他主题相关的各种建议。所有参与者每天都使用多种策略来保持最佳健康。
