Does Diagnostic Certainty Matter?: Pain-Related Stigma in Adolescents with Juvenile Idiopathic Arthritis.
Does Diagnostic Certainty Matter?: Pain-Related Stigma in Adolescents with Juvenile Idiopathic Arthritis.
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诊断确定性重要吗？：青少年特发性关节炎青少年与疼痛相关的耻辱。
DOI：
10.1093/jpepsy/jsac092
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发表时间：
2023
影响因子：
3.6
通讯作者：
Litt,MarkD
中科院分区：
文献类型：
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作者：
Wakefield,EmilyO;Belamkar,Vaishali;Sandoval,Ashley;Puhl,RebeccaM;Edelheit,Barbara;Zempsky,WilliamT;Rodrigues,HannahA;Litt,MarkD
目标儿童慢性疼痛很常见并且容易受到耻辱。患有慢性原发性疼痛的青少年会经历诊断的不确定性，并描述在多种社会背景下与疼痛相关的耻辱经历。幼年特发性关节炎 (JIA) 是一种儿童自身免疫性炎症性疾病，伴有慢性疼痛，但具有明确的诊断标准。目前的研究调查了患有幼年特发性关节炎的青少年与疼痛相关的耻辱经历。方法对由 3-7 名幼年特发性关节炎青少年 (N=16)、12-17 岁 (Mage=15.42,SD=1.82) 和父母 (N=13) 组成的四个焦点小组进行调查，以检查与疼痛相关的耻辱经历和反应。患者是从儿科风湿病门诊招募的。焦点小组讨论时长从 28 到 99 分钟不等。两名编码员使用定向内容分析，得出 82.17% 的评估者间一致性。结果 患有幼年特发性关节炎的青少年描述的与疼痛相关的耻辱经历主要来自学校老师和同龄人，较少来自医疗服务提供者（例如学校护士）和诊断后的家庭成员。出现的主要类别是（1）感觉耻辱，（2）内在耻辱，（3）预期耻辱/隐藏，以及（4）与疼痛相关的耻辱。与疼痛相关的耻辱的一个常见经历是其他人认为青少年太年轻，不会患有关节炎。结论与患有不明原因慢性疼痛的青少年一样，我们的研究结果表明，患有幼年特发性关节炎的青少年在某些社会背景下会经历与疼痛相关的耻辱。诊断的确定性可能有助于医疗提供者和家庭内部提供更大的支持。未来的研究应该调查与疼痛相关的耻辱对儿童疼痛状况的影响。
ObjectivesChildhood chronic pain conditions are common and vulnerable to stigma. Adolescents with chronic primary pain experience diagnostic uncertainty and describe pain-related stigma experiences across multiple social contexts. Juvenile idiopathic arthritis (JIA) is a childhood autoimmune, inflammatory condition with associated chronic pain, but with well-defined diagnostic criteria. The current study examined pain-related stigma experiences in adolescents with JIA.MethodsFour focus groups of 3–7 adolescents with JIA (N=16), ages 12–17 (Mage=15.42,SD=1.82), and parents (N=13) were conducted to examine experiences of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric rheumatology clinic. Focus group length ranged from 28 to 99 minutes long. Two coders used directed content analysis resulting in 82.17% inter-rater level of agreement.ResultsAdolescents with JIA described pain-related stigma experiences predominantly from school teachers and peers, and less from medical providers (e.g., school nurses), and family members after a diagnosis. The primary categories that emerged were (1) Felt Stigma, (2) Internalized Stigma, (3) Anticipatory Stigma/Concealment, and (4) Contributions to Pain-Related Stigma. A common experience of pain-related stigma was the perception by others that the adolescent was too young to have arthritis.ConclusionsIn common with adolescents with unexplained chronic pain, our findings indicate that adolescents with JIA experience pain-related stigma in certain social contexts. Diagnostic certainty may contribute to greater support among medical providers and within families. Future research should investigate the impact of pain-related stigma across childhood pain conditions.