Experiences of hospital care and treatment-seeking behavior for pain from sickle cell disease: qualitative study.
Experiences of hospital care and treatment-seeking behavior for pain from sickle cell disease: qualitative study.
复制标题
镰状细胞病疼痛的医院护理和寻求治疗行为的经验：定性研究。
DOI：
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发表时间：
1999
期刊：
影响因子：
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通讯作者：
David Bevan
中科院分区：
文献类型：
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作者：
K. Maxwell;Allison Streetly;David Bevan
客观化
探讨社会文化因素如何影响镰状细胞病引起的疼痛的管理，通过比较那些通常在家中管理他们的疼痛的人的经历和那些更频繁地入院治疗他们的疼痛的人的经历。
设计
半结构化个人访谈和焦点小组讨论的定性分析。
参与者
57例SS型或S/β地贫(44例)或SC(9例)；4例状态不明。40人参加了焦点小组，6人同时参加了焦点小组和访谈，9人只接受了访谈。参与者根据种族血统、性别和他们在前一年因处理痛苦危机而入院的次数被分配到重点小组。
结果
镰状细胞病患者和医院服务之间的关系是塑造疼痛管理体验和寻求医疗保健行为的几个主要的非临床维度之一。参与者的医院护理经历显示了一系列相互关联的主题，这些主题在性别、种族和去过哪家医院的变量上对大多数参与者来说是共同的。确定的主题包括对镰状细胞病患者的不信任、污名化、过度控制(包括对疼痛的过度治疗和治疗不足)和忽视。个人通过不同的策略应对医疗保健谈判的挑战。经常住院的镰状细胞病患者可能会试图与他们的照顾者建立长期的关系，在与卫生专业人员的互动中变得被动或咄咄逼人，或者定期到不同的医院就诊。那些通常在家中管理疼痛的人表达了对管理疼痛的强烈责任感，并主张将自我教育、自信和抵抗作为医院服务的策略。
结论
组织和提供针对镰状细胞危机痛苦的管理，阻碍了自力更生，鼓励了医院的依赖。护理模式应认识到镰状细胞疾病的慢性性质，并优先考虑患者参与其护理。
OBJECTIVE
To investigate how sociocultural factors influence the management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with the experiences of those who are more frequently admitted to hospital for management of their pain.
DESIGN
Qualitative analysis of semistructured individual interviews and focus group discussions.
PARTICIPANTS
57 participants with genotype SS or S/beta-thal (44 participants) or SC (9 participants); the status of 4 participants was unknown. 40 participants took part in focus groups, 6 took part in both focus groups and interviews, and 9 were interviewed only. Participants were allocated to focus groups according to ethnic origin, sex, and the number of times that they had been admitted to the hospital for the management of painful crises during the previous year.
RESULTS
The relation between patients with sickle cell disease and hospital services is one of several major, nonclinical dimensions that shape experiences of pain management and behavior for seeking health care. Participants' experiences of hospital care show a range of interrelated themes that are common to most participants across variables of sex, ethnicity, and which hospital was attended. Themes identified included the mistrust of patients with sickle cell disease, stigmatization, excessive control (including both overtreatment and undertreatment of pain) and neglect. Individuals responded to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long-term relationships with their caregivers, become passive or aggressive in their interactions with health professionals, or regularly attend different hospitals. Those who usually manage their pain at home expressed a strong sense of responsibility for the management of their pain and advocated self-education, assertiveness, and resistance as strategies toward hospital services.
CONCLUSIONS
The organization and delivery of management for the pain of a sickle cell crisis discourages self-reliance and encourages hospital dependence. Models of care should recognize the chronic nature of sickle cell disorders and give priority to patients' involvement in their care.