Maxwell K, Streetly A, Bevan D
Department of Public Health Sciences, Guy's, King's, and St Thomas's Schools of Medicine, Dentistry, and Biomedical Sciences, King's College London, London SE1 3QD.
BMJ. 1999 Jun 12;318(7198):1585-90. doi: 10.1136/bmj.318.7198.1585.
To investigate how sociocultural factors influence management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with those who are more frequently admitted to hospital for management of their pain.
Qualitative analysis of semistructured individual interviews and focus group discussions.
57 participants with genotype SS or S/beta-thal (44 subjects) or SC (9) (4 were unknown). 40 participants took part in focus groups, six took part in both focus groups and interviews, and nine were interviewed only. Participants were allocated to focus groups according to number of hospital admissions for painful crisis management during the previous year, ethnic origin, and sex.
The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation; excessive control (including both over- and undertreatment of pain); and neglect. Individuals respond 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 carers, may become passive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistance as strategies towards hospital services.
The current organisation and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital dependence. Models of care should recognise the chronic nature of sickle cell disorders and prioritise patients' involvement in their care.
通过比较在家中自行处理疼痛的患者与更频繁因疼痛入院治疗的患者的经历，探讨社会文化因素如何影响镰状细胞病疼痛的管理。
对半结构化个人访谈和焦点小组讨论进行定性分析。
57名基因型为SS或S/β-地中海贫血（44例）或SC（9例）（4例未知）的参与者。40名参与者参加了焦点小组，6名参与者同时参加了焦点小组和访谈，9名参与者仅接受了访谈。参与者根据上一年因疼痛危机管理而入院的次数、种族和性别被分配到焦点小组。
镰状细胞病患者与医院服务之间的关系是塑造疼痛管理体验和寻求医疗行为的几个主要非临床维度之一。医院护理的经历呈现出一系列相互关联的主题，这些主题在性别、种族和就诊医院等变量的大多数参与者中都很常见：对镰状细胞病患者的不信任；污名化；过度控制（包括疼痛治疗过度和不足）；以及忽视。个体通过各种策略应对协商护理的挑战。经常入院的镰状细胞病患者可能会试图与护理人员建立长期关系，在与医护人员的互动中可能会变得被动或激进，或者可能会定期前往不同的医院。那些通常在家中处理疼痛的个体对自己的疼痛管理表达了强烈的自我责任感，并倡导自我教育、坚定自信和抵制作为应对医院服务的策略。
目前镰状细胞危机疼痛管理的组织和实施方式不利于自力更生，反而鼓励依赖医院。护理模式应认识到镰状细胞疾病的慢性性质，并将患者参与护理作为优先事项。
