Suppr超能文献

急性旧世界皮肤利什曼病患者的生活经历:一项来自伊朗的定性内容分析研究

Lived Experiences of Patients Suffering from Acute Old World Cutaneous Leishmaniasis: A Qualitative Content Analysis Study from Iran.

作者信息

Khatami Alireza, Emmelin Maria, Talaee Rezvan, Miramin-Mohammadi Akram, Aghazadeh Nessa, Firooz Alireza, Stenberg Berndt

机构信息

Center for Research and Training in Skin Diseases and Leprosy, Tehran University of Medical Sciences, Tehran, Iran.

Department of Public Health and Clinical Medicine/Epidemiology and Global Health, Umeå University, Umeå, Sweden.

出版信息

J Arthropod Borne Dis. 2018 Jun 13;12(2):180-195. eCollection 2018 Jun.

Abstract

BACKGROUND

The aim of this study was to explore the experiences of patients who suffer from acute cutaneous leishmaniasis in Iran, focusing on quality of life.

METHODS

The study was conducted at two different sites in Iran in 2010-2011. Individual in-depth interviews were conducted with six men and six women parasitologically confirmed acute cutaneous leishmaniasis. Interviews were recorded, transcribed verbatim, and translated into English. Qualitative content analysis was used for data analysis.

RESULTS

The participants, aged 23 to 63yr, had mild to severe disease. Based on the analysis four main themes were developed. "Fearing an agonizing disease" reflects patients' experiences of disease development resulting in sadness and depression, "struggling to cope" and "taking on the blame" both illustrate how patients experience living with the disease, which included both felt and enacted stigma as major social concerns. "Longing for being seen and heard" refers to patients' experiences with healthcare as well as their expectations and demands from communities and healthcare to be involved in closing the knowledge and awareness gap.

CONCLUSION

Mental and social dimensions of cutaneous leishmaniasis were complex and adversely affected patients' lives by causing psychological burden and limiting their social interactions. Health authorities have to plan programs to increase the disease awareness to prevent the existing stigma to improve patients' social condition and medical care.

摘要

背景

本研究旨在探究伊朗急性皮肤利什曼病患者的经历,重点关注生活质量。

方法

该研究于2010 - 2011年在伊朗的两个不同地点开展。对六名男性和六名经寄生虫学确诊为急性皮肤利什曼病的女性进行了个体深入访谈。访谈进行了录音,逐字转录,并翻译成英文。采用定性内容分析法进行数据分析。

结果

参与者年龄在23至63岁之间,病情从轻度到重度不等。基于分析得出了四个主要主题。“恐惧痛苦的疾病”反映了患者对疾病发展的经历,导致悲伤和抑郁,“努力应对”和“承担责任”都说明了患者与疾病共存的经历,其中感受到的耻辱和表现出的耻辱都是主要的社会问题。“渴望被关注和倾听”指的是患者在医疗保健方面的经历,以及他们对社区和医疗保健机构的期望和要求,希望参与缩小知识和意识差距。

结论

皮肤利什曼病的心理和社会层面很复杂,通过造成心理负担和限制社交互动对患者的生活产生了不利影响。卫生当局必须制定计划,提高对该疾病的认识,以防止现有的耻辱感,改善患者的社会状况和医疗护理。

相似文献

2
Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.
JBI Database System Rev Implement Rep. 2015 Jan;13(1):99-111. doi: 10.11124/jbisrir-2015-1809.
4
Understanding Patients Experiences Living with Diabetes Mellitus: A Qualitative Study, Gujarat, India.
J Pharm Res Int. 2021;33(58A):464-471. doi: 10.9734/jpri/2021/v33i58A34139. Epub 2021 Dec 15.
6
Psychosocial burden of localised cutaneous Leishmaniasis: a scoping review.
BMC Public Health. 2018 Mar 15;18(1):358. doi: 10.1186/s12889-018-5260-9.
8
COPD patients' experiences, self-reported needs, and needs-driven strategies to cope with self-management.
Int J Chron Obstruct Pulmon Dis. 2019 May 16;14:1033-1043. doi: 10.2147/COPD.S201068. eCollection 2019.
9
Longing to get back on track: Patients' experiences and supportive care needs after lung cancer surgery.
J Clin Nurs. 2019 May;28(9-10):1546-1554. doi: 10.1111/jocn.14751. Epub 2019 Jan 15.

引用本文的文献

2
The psychosocial impacts of skin-neglected tropical diseases (SNTDs) as perceived by the affected persons: A systematic review.
PLoS Negl Trop Dis. 2024 Aug 2;18(8):e0012391. doi: 10.1371/journal.pntd.0012391. eCollection 2024 Aug.
3
Stigma experiences, effects and coping among individuals affected by Buruli ulcer and yaws in Ghana.
PLoS Negl Trop Dis. 2024 Apr 29;18(4):e0012093. doi: 10.1371/journal.pntd.0012093. eCollection 2024 Apr.
4
6
The psychosocial burden of cutaneous leishmaniasis in rural Sri Lanka: A multi-method qualitative study.
PLoS Negl Trop Dis. 2024 Jan 18;18(1):e0011909. doi: 10.1371/journal.pntd.0011909. eCollection 2024 Jan.
7
Stigma associated with cutaneous and mucocutaneous leishmaniasis: A systematic review.
PLoS Negl Trop Dis. 2023 Dec 28;17(12):e0011818. doi: 10.1371/journal.pntd.0011818. eCollection 2023 Dec.
8
Health-related quality of life of adults with cutaneous leishmaniasis at ALERT Hospital, Addis Ababa, Ethiopia.
PLoS Negl Trop Dis. 2023 Oct 30;17(10):e0011196. doi: 10.1371/journal.pntd.0011196. eCollection 2023 Oct.
10
Vulnerabilities to and the Socioeconomic and Psychosocial Impacts of the Leishmaniases: A Review.
Res Rep Trop Med. 2021 Jun 23;12:135-151. doi: 10.2147/RRTM.S278138. eCollection 2021.

本文引用的文献

1
Incidence and Disability-Adjusted Life Years (Dalys) Attributable to Leishmaniasis In Iran, 2013.
Ethiop J Health Sci. 2016 Jul;26(4):381-8. doi: 10.4314/ejhs.v26i4.10.
2
Global burden of cutaneous leishmaniasis: a cross-sectional analysis from the Global Burden of Disease Study 2013.
Lancet Infect Dis. 2016 May;16(5):584-591. doi: 10.1016/S1473-3099(16)00003-7. Epub 2016 Feb 12.
3
Nuancing stigma through ethnography: the case of cutaneous leishmaniasis in Suriname.
Soc Sci Med. 2016 Feb;151:139-46. doi: 10.1016/j.socscimed.2015.12.044. Epub 2016 Jan 2.
4
Epidemiological status of leishmaniasis in the Islamic Republic of Iran, 1983-2012.
East Mediterr Health J. 2015 Dec 13;21(10):736-42. doi: 10.26719/2015.21.10.736.
5
The burden of mental health in lymphatic filariasis.
Infect Dis Poverty. 2015 Jul 30;4:34. doi: 10.1186/s40249-015-0068-7. eCollection 2015.
10
The potential economic value of a cutaneous leishmaniasis vaccine in seven endemic countries in the Americas.
Vaccine. 2013 Jan 7;31(3):480-6. doi: 10.1016/j.vaccine.2012.11.032. Epub 2012 Nov 20.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验