Lived Experiences of Patients Suffering from Acute Old World Cutaneous Leishmaniasis: a Qualitative Content Analysis Study from Iran
-
Alireza Khatami
,
Maria Emmelin
,
Rezvan Talaee
,
Akram Miramin-Mohammadi
,
Nessa Aghazadeh
,
Alireza Firooz
,
Berndt Stenberg
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.
Karimkhani C, Wanga V, Coffeng LE, Naghavi P, Dellavalle RP, Naghavi M (2016) Global burden of cutaneous leish¬maniasis: a cross-sectional analy-sis from the Global Burden of Disease Study 2013. Lancet Infect Dis. 16(5): 584–591.
Alvar J, Vélez ID, Bern C, Herrero M, Desjeux P, Cano J, Jannin J, den Boer M, WHO Leishmaniasis Control Team (2012) WHO Leishmaniasis Control Team. Leishmaniasis worldwide and glob estimates of its incidence. PLoS One. 7(5): e35671
WHO (2010) Control of the leishmaniases: report of a meeting of the WHO Expert Committee on the control of leishmani¬ases, Geneva.
Shirzadi MR, Esfahani SB, Mohebali A, Yaghoobi-Ershadi MR, Gharachorloo F, Razavi MR, Postigo JA (2015) Epidemiological status of leishmaniasis in the Islamic Republic of Iran, 1983–2012. East Mediterr Health J. 21(10): 736–742.
Khatami A (2007) Development of a disease specific instrument for evaluation of quality of life in patients with acute Old World cutaneous leishmaniasis in adult Iranian patients: A study proto-col. Master's thesis. Umeå University.
Murray HW, Berman JD, Davies CR, Saravia NG (2005) Advances in leishmaniasis. Lancet. 366(9496): 1561–1577.
Dowlati Y (1996) Cutaneous leishmaniasis: clinical aspect. Clin Dermatol. 14(5): 425–431.
Khatami A, Firooz A, Gorouhi F, Dowlati Y (2007) Treatment of acute Old World cutaneous leishmaniasis: a sys-tematic review of the randomized controlled trials. J Am Acad Dermatol. 57(2): e1–e29.
González U, Pinart M, Reveiz L, Alvar J (2008) Interventions for Old World cu-taneous leishmaniasis. Cochrane Da-tabase Syst Rev. 8(4): CD005067.
Khamesipour A, Rafati S, Davoudi N, Ma¬boudi F, Modabber F (2006) Leish-maniasis vaccine candidates for devel-opment: a global overview. Indian J Med
Res. 123(3): 423–438.
Yanik M, Gurel SM, Simsekt Z, Kati M (2004) The psychological impact of cutaneous leishmaniasis. Clin Exp Dermatol. 29(5): 464–467.
Vares B, Mohseni M, Heshmatkhah A, Farjzadeh S, Safizadeh H, Shamsi-Mey-mandi S, Rahnama Z, Reghabatpour L, Fathi O (2013) Quality of life in patients with cutaneous leish¬maniasis. Arch Iran Med. 16(8): 474–477.
Noorpisheh SH, Naghizadeh MM, Nikrouz L (2013) [A study on the life quality of patients suffering from leishmaniasis]. J Fasa Uni Med Sci. 3(2): 155–162 (In Persian).
Reithinger R, Aadil K, Kolaczinski J, Mohsen M, Hami S (2005) Social Im-pact of Leishmaniasis, Afghanistan. Emerg Infec Dis. 11(4): 634–636.
Mohammadi AM, Khamesipour A, Khatami A, Javadi A, Nassiri-Kashani M, Firooz A, Dowlati Y, Behnia B, Eskandari SE (2013) Cutaneous leish-maniasis in suspected patients re¬ferred to the center for research and training in skin diseases and leprosy, Tehran, Iran from 2008 to 2011. Iran J Parasitol. 8(3): 430–436.
Khatami A, Talaee R, Rahshenas M, Khamesipour A, Mehryan P, Tehrani S, Dowlati Y, Firooz A (2013) Dress-ings combined with injection of me-glumine antimoniate in the treatment of cutaneous leishmaniasis: a random-ized controlled clinical trial. PLoS One. 8 (6): e66123.
Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 24(2): 105–112.
Ton TGN, Mackenzie C, Molyneux DH (2015) The burden of mental health in lymphatic filariasis. Infect Dis Pov-erty. 4: 34.
Person B, Bartholomew LK, Gyapong M,Addiss DG, van den Borne B (2009) Health-related stigma among women with lymphatic filariasis from the Domini-can Republic and Ghana. Soc Sci Med. 68(1): 30–38.
Van Brakel WH (2006) Measuring health-related stigma--a literature re¬view. Psychol Health Med. 11(3): 307–334.
Desjeux P (2004) Leishmaniasis: current situation and new perspectives. Immunol Microbiol Infect Dis. 27(5): 305–318.
Gurel MS, Ulukanligil M, Ozbilge H (2002) Cutaneous leishmaniasis in San¬liurfa: epidemiologic and clinical fea-tures of the last four years (1997–2000). Int J Dermatol. 41(1): 32–37.
Ramdas S, van der Geest S, Schallig HD (2016) Nuancing stigma through eth-nog¬raphy: the case of cutaneous leishmaniasis in Suriname. Soc Sci Med. 151: 139–146.
Desjeux P (1999) Global control and Leish-mania HIV co-infection. Clin Derma-tol. 17(3): 317–325.
Kleinman A, Hall-Clifford R (2009) Stigma: a social, cultural and moral process. J Epidemiol Community Health. 63(6): 418–419.
Person B, Addiss D, Bartholomew LK, Meijer C, Pou V (2007) A qualitative study of the psychosocial and health con¬sequences associated with lymphedema among women in the Dominican Republic. Acta Trop. 103(2): 90–97.
Sermrittirong S, Van Brakel WH (2014) Stigma in leprosy: concepts, causes and determinants. Lepr Rev. 85(1): 36–47.
Uttjeck M, Nygren L, Stenberg B, Dufåker M (2007) Marked by visibility of psoria-sis in everyday life. Qual Health Res. 17(3): 364–372.
Pichaimuthu R, Ramaswamy P, Bikash K, Joseph R (2011) A measurement of the stigma among vitiligo and psoria-sis patients in India. Indian J Dermatol Venereol Leprol. 77(3): 300–306.
Hotez PJ (2016) Stigma: The stealth weapon of the NTD. PLoS Negl Trop Dis. 2(4): e230.
Heydarpour F, Sari AA, Mohebali M, Shirzadi M, Bokaie S (2016) Incidence and Disability-Adjusted Life Years (Dalys) Attributable to Leishmaniasis in Iran, 2013. Ethiop J Health Sci. 26 (4): 381–388.
Kassi M, Kassi M, Afghan AK, Rehman R, Kasi PM (2008) Marring leishman-iasis: the stigmatization and the im-pact of cutaneous leishmaniasis in Pa-kistan and Afghanistan. PLoS Negl Trop Dis. 2(10): e259.
Aflatoonian MR, Sharifi I, Ranjbar L (2010) To evaluate the costs of pre-ven¬tion on incidence of cutaneous leish¬man¬iasis due of earthquake in Bam. Iran J Epidemiol. 6(2): 32–38 (In Per¬sian).
Bacon KM, Hotez PJ, Krutchen SD, Kamhawi S, Bottazzi ME, Valenzuela JG, Lee BY (2013) The potential eco-nomic value of a cutaneous leishmaniasis vac¬cine in seven endemic coun-tries in the Americas. Vaccine. 31(3): 480–486.
Aflatoonian MR, Sharifi I, Fekri AR (2009) Evaluation of the cost–effectiveness of cutaneous leishmaniasis treatment af-ter the earthquake in Bam. J Kerman Uni Med Sci. 16(3): 365–373 (In Per-sian).
| Files | ||
| Issue | Vol 12 No 2 (2018) | |
| Section | Original Article | |
| DOI | https://doi.org/10.18502/jad.v12i2.44 | |
| Keywords | ||
| Cutaneous leishmaniasis Qualitative research Quality of life | ||
| Rights and permissions | |
|
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. |
