Quality of Life, Perceived Stigma, Activity and Participation of People
                        with Leprosy-Related Disabilities in South-East Nepal

Brouwers, Corline; Brakel, Wim H. van; Cornielje, Huib

doi:10.5463/dcid.v22i1.15

Cited by 39 publications

(36 citation statements)

References 3 publications

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“…However, it is important to note that these findings cannot be generalized to use of the scale in other countries. The P-scale has been used successfully in many other languages and only few problems have been reported [23, 24, 31–33]. However, re-validation is necessary in every new cultural setting where the instrument is to be used.…”

Section: Discussionmentioning

confidence: 99%

Testing the psychometric properties of the Participation Scale in Eastern Nepal

Stevelink¹,

Terwee

Banstola

et al. 2012

Qual Life Res

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PurposeTo test the psychometric properties of the Participation Scale (P-scale) among people with various disabling conditions in Eastern Nepal.MethodsA sample of 153 individuals with disabling conditions was selected through systematic random sampling. The following psychometric properties were tested: structural validity (explanatory and confirmatory factor analyses), internal consistency, inter-tester reliability, construct validity and floor and ceiling effects.ResultsThe explanatory factor analysis indicated a two-factor structure (‘work-related participation’ and ‘general participation’). The confirmatory factor analysis suggested good model fit. The internal consistency measured with Cronbach’s alpha was 0.93 for the whole scale and 0.78 and 0.93 for the subscales. The inter-tester reliability coefficient was 0.90. All hypothesized correlations were as expected confirming the construct validity of the scale. No floor or ceiling effects were identified for the whole scale; only the subscale ‘work-related participation’ showed a ceiling effect.ConclusionThe results of the analyses suggest that the psychometric properties of the P-scale are sufficient in the context of Eastern Nepal. Use of the P-scale will require (re-) confirmation of its validity in each new cultural context.

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Section: Discussionmentioning

confidence: 99%

Testing the psychometric properties of the Participation Scale in Eastern Nepal

Stevelink¹,

Terwee

Banstola

et al. 2012

Qual Life Res

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“…The effect of leprosy or leprosy-related stigma on the quality of life is interesting but has been little studied, and when it has, the results are mixed. Brouwers et al [34] did not find a significant association in a multivariate analysis on data from East Nepal, while Tsutsumi et al [5] did find an association between anticipated stigma and quality of life in Bangladesh. By assessing stigma, participation restriction and quality of life we hoped to gain a broad impression of the impact of the counselling intervention on stigma.…”

Section: Introductionmentioning

confidence: 99%

The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia

et al. 2016

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BackgroundThis paper assesses the impact of a counselling intervention on reducing leprosy-related stigma in Cirebon District, Indonesia. The unique features of this intervention are its rights-based approach, the underlying Cognitive Behavioural Therapy (CBT) model, the three types of counselling and the lay and peer counsellors who were involved.Methodology/principal findingsMixed methods (e.g. three scales, interviews, focus group discussions and reflection notes) were used to assess the impact of the intervention, which ran over a two-year period. There was a control area with no interventions. The study participants were people affected by leprosy and other key persons (e.g. family members). The sample size differs per method, for example, data regarding 67 counselling clients and 57 controls from a cohort, and notes from 207 counselling clients were examined. The notes showed that most clients faced stigma on a daily basis, whether internalized, anticipated and/or enacted. A significant reduction was found between the before and after total scores of the SARI Stigma Scale (p-value < 0.001), Participation Scale Short (p-value < 0.001) and WHO Quality of Life score (p-value < 0.001) among the counselling clients. While there is also an effect in the control group, it is much larger in the intervention group. Qualitative data indicates that knowledge and rights trigger change. Clients took steps to improve their life such as re-connecting with neighbours, helping in household activities and applying for jobs. Challenges include the wish to conceal their condition.Conclusion/significanceThe findings show that the counselling intervention was effective in reducing stigma, promoting the rights of people with leprosy and facilitating their social participation. More research is needed on how to create a more sustainable intervention, preferably structurally embedded in the health or social services.

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“…[1][2][3] Some studies have shown that leprosy patients receive a low QoL score compared with the general population. 1,[4][5][6] Peripheral neuropathy is one of the clinical aspects of the disease that may be related to QoL impairment. Some studies found that lower QoL is associated with neuropathy, especially in leprosy patients with deformities and physical disabilities.…”

Section: Introductionmentioning

confidence: 99%