Umeå universitets logga

umu.sePublikationer
Ändra sökning
RefereraExporteraLänk till posten
Permanent länk

Direktlänk
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Annat format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annat språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
Lived experiences of patients suffering from acute Old World cutaneous leishmaniasis: A qualitative content analysis study from Iran
Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa. Center for Research and Training in Skin Diseases and Leprosy, Tehran University of Medical Sciences, Tehran, Iran.
Visa övriga samt affilieringar
2018 (Engelska)Ingår i: Iranian Journal of Arthropod-Borne Diseases, ISSN 1735-7179, E-ISSN 2008-2517, Vol. 12, nr 2, s. 180-195Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
2018. Vol. 12, nr 2, s. 180-195
Nyckelord [en]
Cutaneous leishmaniasis, Qualitative research, Quality of life
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi Dermatologi och venereologi
Identifikatorer
URN: urn:nbn:se:umu:diva-150629OAI: oai:DiVA.org:umu-150629DiVA, id: diva2:1238933
Tillgänglig från: 2018-08-15 Skapad: 2018-08-15 Senast uppdaterad: 2019-05-22Bibliografiskt granskad
Ingår i avhandling
1. It is on my skin, on my soul, and on my life: development of a disease-specific quality of life instrument for adult patients with acute cutaneous leishmaniasis in Iran
Öppna denna publikation i ny flik eller fönster >>It is on my skin, on my soul, and on my life: development of a disease-specific quality of life instrument for adult patients with acute cutaneous leishmaniasis in Iran
2018 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Abstract [en]

Background: Cutaneous leishmaniasis (CL), is the most common form of a group of diseases known as leishmaniases. They are caused by obligatory intracellular protozoa from the genus Leishmania and transmitted by sandflies. Over 350 million people are at risk of getting leishmaniasis and 1,000,000 to 1,200,000 individual get CL each year, the majority of them are living in developing countries. CL may affect a patient’s physical and mental health, and social relations impairing his/her quality of life (QoL).

Aim: The aim of this thesis was to develop a disease-specific instrument for measuring QoL in adult patients suffering from the acute form of CL in Iran according to a needs-based approach.

Methods: This thesis used a mixed-method approach and was based on two quantitative studies and one qualitative study. The first study was a systematic review on the randomized controlled clinical trials (RCTs) conducted on acute CL in the Old World. The second one was a qualitative content analysis study conducted through interviews with patients with CL in Iran. The third study was a psychometric evaluation of an instrument that was developed according to the results of the second study. For making a QoL instrument with fundamental measurement properties, the Rasch method was used.

Results: The findings of the first paper demonstrated that the majority of the 50 reviewed RCTs were of poor quality of conduct and report. An important finding was that none of those studies included a patient-reported outcome in their primary, secondary, or even tertiary outcome assessments. To obtain the patients’ lived experience and perspectives on their disease, 12 individual in-depth interviews were conducted with patients with CL. Four 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 system to be involved in closing the knowledge and awareness gap. The third study was conducted as a survey on 107 patients with acute CL answering 50 questions with four response categories focusing different aspects of QoL, named “P-CL-QoL”, an acronym for Preliminary Cutaneous Leishmaniasis Quality of Life instrument. The Rasch fitness criteria for the original 50- item questionnaire indicated that it was not optimal for fundamental measurement of the QoL in CL patients. Two more Rasch models were developed by merging the last two response categories and making a 3-point Likert scale, and the three last response categories, making a dichotomized “Yes” and “No” response choices to each item. The final 34-item instrument with dichotomous responses showed improved measurement properties including very good targeting and item-separation index, internal consistency (Chronbach’s α=0.94), and a log-likelihood Chi square=2242.50 (degree of freedom=2640, and P=1.000) indicating excellent fitting to a Rasch model. This version was named Cutaneous Leishmaniasis Quality of Life instrument (CL-QoL). According our findings, the mean (±standard deviation) of raw scores and 0-34 scaled measures of the participants were 15.9 (±9.2) and 16.8 (±6.9), respectively. The impact of CL on the QoL of the patients was none to minimal in 17.0 %, mild in 25.0 %, moderate in 31.8 %, high in 12.5 %, and very high in 13.7 % of the participants. QoL impairment was not related to the sex and age of the individuals, geographic location where CL was caught, duration of the disease, and its severity (P>0.05).

Conclusion: This thesis demonstrated that there is a lack of patients’ reported outcomes in clinical trials on CL, and that mental and social dimensions of CL are complex and adversely affect patients' lives by causing psychological burden and limiting their social interactions. The health authorities have to plan programs to increase the disease awareness in communities and among healthcare professionals to prevent the existing stigma and improve patients' social condition and medical care. While we could suggest a diseases-specific QoL measurement instrument through our third study, we acknowledge that the developed instrument may not be optimal and has to be validated in other populations, preferably using the Rasch method.

Ort, förlag, år, upplaga, sidor
Umeå: Umeå universitet, 2018. s. 86
Serie
Umeå University medical dissertations, ISSN 0346-6612 ; 1969
Nyckelord
cutaneous leishmaniasis, fundamental measurement, needs-based approach, neglected tropical disease, probabilistic model, quality of life, qualitative content analysis, the Rasch model
Nationell ämneskategori
Dermatologi och venereologi Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Forskningsämne
epidemiologi
Identifikatorer
urn:nbn:se:umu:diva-151114 (URN)978-91-7601-914-6 (ISBN)
Disputation
2018-09-21, Lionssalen, Enheten för dermatologi och venereologi, By 7, Norrlands universitetssjukhus, Umeå, 09:00 (Engelska)
Opponent
Handledare
Tillgänglig från: 2018-08-31 Skapad: 2018-08-27 Senast uppdaterad: 2018-09-18Bibliografiskt granskad

Open Access i DiVA

fulltext(497 kB)196 nedladdningar
Filinformation
Filnamn FULLTEXT01.pdfFilstorlek 497 kBChecksumma SHA-512
3b1f4ecd8fbdbe655979dc1342bc9b497547f0af351c4be95863ffaa3deda335f31829c3e4f608523bf9ae95e2d87f3d4237a93749ff5609cb2028bf8261ac17
Typ fulltextMimetyp application/pdf

Övriga länkar

URL

Person

Khatami, AlirezaEmmelin, MariaStenberg, Berndt

Sök vidare i DiVA

Av författaren/redaktören
Khatami, AlirezaEmmelin, MariaStenberg, Berndt
Av organisationen
Epidemiologi och global hälsaDermatologi och venereologiAvdelningen för medicin
I samma tidskrift
Iranian Journal of Arthropod-Borne Diseases
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologiDermatologi och venereologi

Sök vidare utanför DiVA

GoogleGoogle Scholar
Totalt: 197 nedladdningar
Antalet nedladdningar är summan av nedladdningar för alla fulltexter. Det kan inkludera t.ex tidigare versioner som nu inte längre är tillgängliga.

urn-nbn

Altmetricpoäng

urn-nbn
Totalt: 445 träffar
RefereraExporteraLänk till posten
Permanent länk

Direktlänk
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Annat format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annat språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf