Social stigma: a comparative qualitative study of integrated and vertical care approaches to leprosy

Arole, Shobha; Premkumar, R; Arole, R; Maury, Matthew; Saunderson, Paul

doi:10.47276/lr.73.2.186

Cited by 57 publications

(15 citation statements)

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“…(2014) found that over 60% of the leprosy-affected persons from Rio de Janeiro, Brazil studied lost confidence in themselves. The low self-esteem of patients manifests in, for example, not being willing to talk about the disease in public, isolation from family members and society, and self-stigma (Arole et al ., 2002; Peters et al ., 2014; Anjum et al ., 2017).…”

Section: Resultsmentioning

confidence: 99%

The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members – a systematic review

Somar

Waltz²,

Brakel

2020

Glob. Ment. Health

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Leprosy has long-term consequences related to impairment and stigma. This includes a major impact on mental health. This study aims to consolidate current evidence regarding the mental health impact of leprosy on affected persons and their family members. In addition, determinants influencing mental health outcomes among leprosy-affected persons and effective interventions are examined. A keyword-based search was conducted in PubMed, Web of Science, Scopus, PsycINFO, Infolep and InfoNTD; additional literature was also considered. Articles presenting primary data involving leprosy-affected persons or their family members experiencing mental conditions were included. Independent extraction of articles was executed using predefined data fields. Articles were sorted according to relevance. In total, 65 studies were included in this systematic review. Multiple psychiatric morbidities have been identified among leprosy-affected persons, including depression, anxiety disorders and suicide (attempts). Additional factors were found that may impact mental health. Moreover, studies found that demographic factors, lifestyle and disease-specific factors and stigma and discrimination impact mental health. Depressive symptoms and low self-esteem were identified among children of leprosy-affected persons. In addition, interventions were identified that could improve the mental wellbeing of leprosy patients. Depressive disorders and anxiety disorders were found to be very common among persons affected by leprosy. Feelings such as fear, shame and low self-esteem are also experienced by those affected, and their children. Further research is necessary to ensure that mental health impact is included when determining the burden of disease for leprosy, and to relieve this burden.

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Section: Resultsmentioning

confidence: 99%

The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members – a systematic review

Somar

Waltz²,

Brakel

2020

Glob. Ment. Health

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“…Both felt (anticipated) stigma and community stigma were high in our study population. Perception of stigma and experiences of discrimination cause people to feel ashamed, and may cause them to isolate themselves from society, thus perpetuating the stereotype that leprosy is something shameful to be hidden away ( 28 ). It may cause anxiety, depression, isolation, problems in family relationships and friendships and reduce treatment adherence and chances of recovery ( 29 – 31 ).…”

Section: Discussionmentioning

confidence: 99%

Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination

Brakel

Sihombing

Djarir

et al. 2012

Global Health Action

297

255

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BackgroundLeprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment.MethodsWe conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation.ResultsOverall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts.DiscussionThe majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment.

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“…family) about the condition, how to mobilise resources, how to care. (Lusli et al, 2016) b and (Raju et al, 2008;Sermrittirong et al, 2014;Doosti-Irani et al, 2017) Home care teams (HCT) Teams that visit persons from the stigmatised population on a regular basis to strengthen home and self-care (Macq et al, 2008;Sermrittirong et al, 2014) Community based rehabilitation (CBR) Community development for rehabilitation, focusing on reintegration of people from the stigmatised population by organising screening (Arole et al, 2002;Raju et al, 2008;Nyamathi et al, 2013)…”

Section: Supplementary Materialsmentioning

confidence: 99%

Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies

Hartog

Hubbard

Krouwer

et al. 2020

Social Science & Medicine

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Stigmatisation and discrimination are common worldwide, and have profound negative impacts on health and quality of life. Research, albeit limited, has focused predominantly on adults. There is a paucity of literature about stigma reduction strategies concerning children and adolescents, with evidence especially sparse for low-and middle-income countries (LMIC). This systematic review synthesised child-focused stigma reduction strategies in LMIC, and compared these to adultfocused interventions.Relevant publications were systematically searched in July and August 2018 in the following databases; Cochrane, Embase, Global Health, HMIC, Medline, PsycINFO, PubMed and WorldWideScience.org, and through Google Custom Search. Included studies and identified reviews were cross-referenced. Three categories of search terms were used: (i) stigma, (ii) intervention, and (iii) LMIC settings. Data on study design, participants and intervention details including strategies and implementation factors were extracted.Within 61 unique publications describing 79 interventions, utilising 14 unique stigma reduction strategies, 14 papers discussed 21 interventions and 10 unique strategies involving children. Most studies targeted HIV/AIDS (50% for children, 38% for adults) or mental illness (14% vs 34%) stigma. Community education (47%), individual empowerment (15%) and social contact (12%) were most employed in child-focused interventions. Most interventions were implemented at one socio-ecological level; child-focused interventions mostly employed community-level strategies (88%). Intervention duration was mostly short; between half a day and a week.

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Social stigma: a comparative qualitative study of integrated and vertical care approaches to leprosy

Cited by 57 publications

References 0 publications

The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members – a systematic review

The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members – a systematic review

Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination

Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies

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