Knowledge : PwL have good knowledge towards HD Emotional response : PwL isolate themselves and refuse to participate socially. They experience psychological stress
8
Joseph and Rao
India
1997
50
WHOQOL22
Quality of life : PwL have lower QoL compared to the general population
9
Oliveira
Brazil
1997
202
Structured pretested questionnaire (standardized by the researchers) and in-depth structured interview (not standardized)
Emotional response: PwL feel that HD makes them suffer and are discriminated Building a marriage: PwL have low desire to have a sexual relationship Oppurtunity of employment: PwL decided to retire from their jobs to avoid stigma
10
Van De Weg et al.
Nigeria
1998
60
Questionnaire (not standardized)
Knowledge: PwL have poor knowledge towards HD Health-seeking behavior: On average, PwL delayed seeking treatment for 2 years after being diagnosed
11
Amenu et al.
Ethiopia
2000
79
Questionnaire (standardized by the researchers)
Health-seeking behavior: G2D PwL got treatment from traditional healers at the onset of HD symptoms. Appropriate treatment is delayed for 3 years on average
12
Steentjes
Netherlands
2001
150
In-depth interview (not standardized)
Emotional response: PwL feel that their disease is extremely severe and a burden on their lives. They refused to be promoted because it might expose their symptoms
13
Senturk and Sagduyu
Turkey
2001
65
Composite International Diagnostic Interview-Primary Health Care Version (CIDI-PHCV) 63, Brief Disability Questionnaire (BDQ) 64, and sociodemographic and clinical information form (not standardized)
Quality of life: PwL have a ratio of depression similar to that of the general population, but they have higher anxiety disorders
14
Heijnders
Nepal
2004
76
Interview (standardized by the researchers)
Knowledge: Most PwL lack knowledge about the initial symptoms of HD Health-seeking behavior: PwL felt that their disease was not severe initially, so they did not try to seek any treatment
15
Shieh et al.
Taiwan
2003
21
Focus group discussion/individual interview (not standardized)
Knowledge: PwL were aware of the emergence of HD symptoms, but they did not know the cause. Emotional response: After being diagnosed, PwL feel ashamed and stigmatized. This ruins their social life.
16
Tsutsumi et al.
Bangladesh
2003
189
WHOQOL-BREF22 and Self-Reporting Questionnaire (SRQ) 23
Quality of life: PwL have a lower QoL score compared to the general population significantly
17
Mullick et al.
Bangladesh
2008
100
Questionnaire (standardized by the researchers)
Quality of life: Most PwL experience major depressive illness, anxiety disorders, and dysthymic problems. Diagnosis of HD is the major factor causing these mental illnesses
18
Boku et al.
The Philippines
2010
70
Screening of Activity Limitation and Safety Awareness (SALSA) scale 24 and the General Self-Efficacy (GSE) scale 25
Emotional response: PwL with visible disabilities have a higher level of social participation than those without them
19
Slim et al.
The Netherlands
2010
82
WHO Disability Schedule II (DAS II) 68 and Impact on Participation and Autonomy (IPA) Questionnaire 26
Emotional response: 83% of PwL have extremity disorders. These disorders limit their daily activity and, thus, affect their social life
20
Lustosa et al.
Brazil
2011
107
SF-36 Questionnaire 27
Health-seeking behavior: The severity of disability parallels the period of treatment onset delay Emotional response: PWL with HD reactions are discriminated 4 times higher Quality of life It was found that leprosy still affects the lower social classes in historically endemic areas, causing high percentages of secondary injuries that negatively affect the work capacity and quality of life of affected people, thus perpetuating the stigma and ancient prejudice associated with the disease
21
Atre et al.
India
2011
Semistructured interview (not standardized)
Knowledge: Only 48% of patients correctly knew their disease, despite having been diagnosed and given treatment Health-seeking behavior: 24% of PwL delay seeking treatment for more than a year. 59% of PWL seek out traditional healers Barriers accessing healthcare services: 67% of PwL mentioned that they had not disclosed their condition to the community, suggesting an anticipation of stigma. The majority of patients (86%) mentioned that they had disclosed their condition to their family, and many (64%) acknowledged support from their spouse
Emotional response: Diverse problems are experienced by PwL due to disability. Stigma and discrimination from the society make PwL feel ashamed Marriage and employment oppurtunity: PwL find it difficult to have a spouse, build a happy marriage, and get hired. Some of them were abandoned, divorced, fired, and forced to work without being paid. These lead to a poverty cycle among PwL
23
Leite et al.
Brazil
2012
30
WHOQOL-BREF22
Quality of life: HD affects PwL’s quality of life physically and psychologically
24
Peters et al.
Indonesia
2013
53
Interview (not standardized) and FGD (not standardized)
Knowledge: PwL have poor knowledge about HD transmission and etiology Barriers to accessing healthcare service: Some reasons that made PwL reluctant to seek medical treatment are that they did not have enough money and their primary-care location was far away. Some PwL underestimate the initial symptoms of HD Emotional response: PwL were complicated by the HD symptoms. They refer to their bodies as “broken.” Sadness, frustration, loss of confidence, devaluation of their own capacity, stress, and hopelessness were some of the emotions described due to leprosy. A few PwL said that they had considered ending their lives. Several PwL became reserved, shy, and ashamed and isolated themselves, but at the same time, several family members and people in the community also isolated those affected Employment opportunity: Some PwL were physically not able to do the work that they used to do. Some were fired because of leprosy, while others resigned themselves as suggested by family members. The impact can remain for a long time, even after being declared cured
25
Singh et al.
India
2013
245
Case studies and participant observation (not standardized)
Knowledge: Nearly half of PwL (49.7%) were unaware of the severity of symptoms such as red patches, minor swelling, and tingling sensations felt in wounds, believing that the symptoms would disappear Health-seeking behavior: The majority (26.93%) of PwL reported that, during the initial stages of their disease, self-medication such as massaging with mustard oil was sought for 4–5months
26
Bello et al.
Ghana
2013
70
HRQOL27
Quality of life: There was low QoL among the sampled elderly people affected by leprosy at the selected leprosaria ( < 0.05), thus stressing the need for measures that could improve their health and socioeconomic status within the settlements
27
Adhikari et al.
Nepal
2014
135
EMIC Questionnaire 30
Emotional response: 59% of PwL have never told their family about their disease. Better knowledge about HD made a better psychological impact
28
Loures et al.
Brazil
2014
20
Semistructured interview (not standardized)
Knowledge: Most PwL were not able to explain the process of transmission, treatment, and cure of HD. Emotional response: Most PwL reported negative feelings such as sadness, shame, and suffering
29
Rocha-Leite et al.
Brazil
2014
120
Mini International Neuropsychiatric Interview (MINI-Plus) 31
Quality of life: About 71.6% of PwL are diagnosed with having a mental illness
30
Stephen et al.
India
2014
100
Structured questionnaire (standardized by the researchers)
Knowledge: About 32% of PwL were aware that leprosy is due to infection caused by a germ A significant number of PwL had poor knowledge of the cause, mode of transmission, symptoms, referral pattern, cure, and prognosis of leprosy
31
Raju et al.
India
2015
320
Structured interview (not standardized)
Health-seeking behavior: Two of the most highly (and most consistently) ranked issues across respondents’ type and region were seeing improvement and not seeing improvement. Discontinuing treatment because a person observes substantial improvement (and, therefore, assumes treatment is no longer required) or, conversely, discontinuing because the person does not see any improvement and assumes treatment is ineffective
32
Lusli et al.
Indonesia
2015
31
In-depth interviews (IDIs) and FGD (not standardized)
Emotional response: PwL shared feelings of being shy, sad, confused, afraid, and powerless in the face of the stigma and discrimination they faced from the outside world. They also talked about feelings of guilt and about hiding from others, by staying at home, for instance. Some voiced feelings of being a burden to their family. PwL explained that, since they believe what people say is true, they prefer to keep their feelings locked inside and not to share them with others PwL reported dealing with their own negative thoughts provoked either by what others think and say about them or by what they think about themselves. The participants affected by leprosy explained that the lack of social relationships could be due to their status as sick people Although the participants have said they consider themselves as part of their families and society, they simultaneously feel rejected by them due to their appearance: skin patches, physical deformity, and other visible impairments
33
Van Haaren et al.
Suriname
2016
13
B-IPQ32 and semistructured interview (not standardized)
Knowledge: PwL have poor knowledge towards the cause of HD Emotional response: PwL still have psychological impact and social and psychological disorders even after being cured
34
Ibikunle et al.
Nigeria
2016
63
EMIC, the Internalized Stigma of Mental Illness scale (ISMI) 33, participation scale 28, Eye, Hand, and Foot impairment (EHF) score 34, and the Social Distance Scale (SDS) 35
Emotional response: PwL have significant restrictions in participating socially, especially those with G2D
35
Govindharaj et al.
India
2017
358
Semistructured questionnaire (not standardized)
Emotional response: Most PwL (79.5%) feel afraid and worry about their disease due to deformity and discrimination
36
Govindharaj et al.
India
2017
100
WHOQOL-BREF22
Quality of life: PwL with G2D have lower QoL compared to those without it
37
Indow et al.
Indonesia
2019
6
In-depth interview (not standardized)
Emotional response: PwL undergo self-stigmatizing after being diagnosed with HD. Shyness and fear were expressed by PwL because they were late in reaching out for help or treatment. Reasons for respondents delaying their treatment were because they do not know the initial signs or symptoms of leprosy. The stigma felt was also personal, as well as the stigma they would receive from their family and surrounding environment, especially to informants who had experienced disability, because they would bear the shame of their lives because of their disability
38
Sinambela et al.
Indonesia
2020
30
WHOQOL22
Quality of life: Significant correlation perceived stigma and QOL
