Khatami Alireza, Emmelin Maria, Talaee Rezvan, Miramin-Mohammadi Akram, Aghazadeh Nessa, Firooz Alireza, Stenberg Berndt
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.
J Arthropod Borne Dis. 2018 Jun 13;12(2):180-195. eCollection 2018 Jun.
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.
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.
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.
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.
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。
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。
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。
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。