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Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study.系统性自身免疫性风湿病中神经精神症状的流行情况和识别:一项国际混合方法研究。
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2
Mindfulness-Based Stress Reduction for Systemic Lupus Erythematosus: A Mixed-Methods Pilot Randomized Controlled Trial of an Adapted Protocol.基于正念减压法对系统性红斑狼疮的干预:一项针对改良方案的混合方法试点随机对照试验
J Clin Med. 2021 Sep 28;10(19):4450. doi: 10.3390/jcm10194450.
3
Development of a psychosocial oncology core curriculum for multidisciplinary education and training: Initial content validation using the modified Delphi Method.开发心理肿瘤学核心课程,以进行多学科教育和培训:使用改良 Delphi 法进行初步内容验证。
Psychooncology. 2022 Jan;31(1):130-138. doi: 10.1002/pon.5791. Epub 2021 Sep 15.
4
Medication decision-making and adherence in lupus: patient-physician discordance and the impact of previous 'adverse medical experiences'.狼疮患者的药物决策和依从性:医患分歧以及先前“不良医疗经历”的影响。
Rheumatology (Oxford). 2022 Apr 11;61(4):1417-1429. doi: 10.1093/rheumatology/keab534.
5
Patient Experiences of Systemic Lupus Erythematosus: Findings From a Systematic Review, Meta-Summary, and Meta-Synthesis.系统性红斑狼疮患者体验的系统性综述、元总结和元综合研究结果。
Arthritis Care Res (Hoboken). 2022 Nov;74(11):1813-1821. doi: 10.1002/acr.24639. Epub 2022 Jul 13.
6
The Care-coordination Approach to Learning Lupus Self-Management: a patient navigator intervention for systemic lupus inpatients.照顾协调方法学习狼疮自我管理:系统性红斑狼疮住院患者的患者导航员干预。
Lupus Sci Med. 2021 May;8(1). doi: 10.1136/lupus-2021-000482.
7
Is it me? The impact of patient-physician interactions on lupus patients' psychological well-being, cognition and health-care-seeking behaviour.是我的问题吗?医患互动对狼疮患者心理健康、认知及就医行为的影响。
Rheumatol Adv Pract. 2020 Jul 22;4(2):rkaa037. doi: 10.1093/rap/rkaa037. eCollection 2020.
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Rheumatol Adv Pract. 2020 May 27;4(2):rkaa016. doi: 10.1093/rap/rkaa016. eCollection 2020.
9
Major Depression and Adverse Patient-Reported Outcomes in Systemic Lupus Erythematosus: Results From a Prospective Longitudinal Cohort.系统性红斑狼疮患者中重度抑郁与不良患者报告结局:来自前瞻性纵向队列研究的结果。
Arthritis Care Res (Hoboken). 2021 Jan;73(1):48-54. doi: 10.1002/acr.24398. Epub 2020 Dec 6.
10
Effects of web-based education and counselling for patients with systemic lupus erythematosus: self-efficacy, fatigue and assessment of care.基于网络的教育和咨询对系统性红斑狼疮患者的影响:自我效能、疲劳和护理评估。
Lupus. 2020 Jul;29(8):884-891. doi: 10.1177/0961203320928423. Epub 2020 May 31.

红斑狼疮患者寻求心理健康服务的障碍、促进因素和偏好:一项定性研究。

Barriers, Facilitators, and Preferences for Mental Health Services Among Patients With Systemic Lupus Erythematosus: A Qualitative Study.

机构信息

Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.

Brigham and Women's Hospital, Boston Children's Hospital, and Harvard Medical School, Boston, Massachusetts.

出版信息

Arthritis Care Res (Hoboken). 2024 Jul;76(7):914-925. doi: 10.1002/acr.25321. Epub 2024 Apr 2.

DOI:10.1002/acr.25321
PMID:38433607
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11209808/
Abstract

OBJECTIVE

Although patients with systemic lupus erythematosus (SLE) experience high levels of depression and anxiety disorders, evidence concerning patient perceptions of facilitators and barriers to effective uptake of mental health services (eg, referral to therapists and psychiatrists, psychoeducational interventions, or support groups) is limited.

METHODS

We conducted semistructured qualitative interviews with 15 adults with SLE to explore patient experiences and perceptions of mental health services to identify facilitators and barriers to accessing mental health care among patients with SLE. Qualitative interviews were conducted via telephone and audio recorded for transcription and directed content analysis using NVivo software by two coders.

RESULTS

The median age of the 15 participants was 48 years, 87% were female, 33% identified as Black or African American, and 33% identified as Hispanic or Latino. Qualitative themes were organized into three domains: barriers, facilitators, and preferences for mental health services. Barriers to the use of mental health services include mental health stigma, sociodemographic factors, lack of autonomy, and time commitment. Facilitators to the use of mental health services included strong relationships with their rheumatologists and mental health care clinician experience with patients with SLE. Preferences for mental health services included education-based formats, mental health providers who work with patients with SLE, peer group formats, demographically and disease-matched psychological resources, and an emphasis on non-disease-related activities.

CONCLUSION

In the setting of persistent unmet psychosocial needs of patients living with SLE, data from this qualitative study will inform the development and refinement of mental health interventions that bolster psychological wellbeing in the SLE population.

摘要

目的

尽管系统性红斑狼疮(SLE)患者存在较高水平的抑郁和焦虑障碍,但有关患者对有效获取心理健康服务(如转介至治疗师和精神科医生、心理教育干预或支持小组)的促进因素和障碍的看法的证据有限。

方法

我们对 15 名 SLE 成年患者进行了半结构式定性访谈,以探讨患者对心理健康服务的体验和看法,以确定 SLE 患者获取心理健康护理的促进因素和障碍。定性访谈通过电话进行,并进行录音转录,由两名编码员使用 NVivo 软件进行定向内容分析。

结果

15 名参与者的中位年龄为 48 岁,87%为女性,33%为黑人和非裔美国人,33%为西班牙裔或拉丁裔。定性主题分为三个领域:障碍、促进因素和心理健康服务偏好。使用心理健康服务的障碍包括心理健康污名、社会人口因素、缺乏自主权和时间投入。使用心理健康服务的促进因素包括与风湿病医生的牢固关系以及心理健康护理临床医生与 SLE 患者的合作经验。心理健康服务偏好包括基于教育的形式、与 SLE 患者合作的心理健康提供者、同伴群体形式、人口统计学和疾病匹配的心理资源以及强调与疾病无关的活动。

结论

在存在 SLE 患者持续存在的未满足的心理社会需求的情况下,这项定性研究的数据将为开发和完善心理健康干预措施提供信息,以增强 SLE 人群的心理健康。