title: The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia.
abstract: This 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.
  
  
  
  Mixed 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.
  
  
  
  The 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.
authors.affiliation: Centre for Disability Studies, Selo Sumarjan Research Centre (SSRC), Faculty of Social and Political Sciences, Universitas Indonesia, Depok, Indonesia.|Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands.
authors.forename: Mimi
authors.initials: M
authors.lastname: Lusli
authors.affiliation: Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands.
authors.forename: Ruth
authors.initials: R
authors.lastname: Peters
authors.affiliation: Disability Studies, VUmc, Amsterdam, The Netherlands.|Netherlands Leprosy Relief, Technical Department, Amsterdam, The Netherlands.
authors.forename: Wim
authors.initials: W
authors.lastname: van Brakel
authors.affiliation: Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands.
authors.forename: Marjolein
authors.initials: M
authors.lastname: Zweekhorst
authors.affiliation: EMGO+ Institute for Health and Care Research, VU Medical Centre and GGZ inGeest, Amsterdam, The Netherlands.
authors.forename: Sorana
authors.initials: S
authors.lastname: Iancu
authors.affiliation: Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands.
authors.forename: Joske
authors.initials: J
authors.lastname: Bunders
authors.affiliation: Centre for Disability Studies, Selo Sumarjan Research Centre (SSRC), Faculty of Social and Political Sciences, Universitas Indonesia, Depok, Indonesia.
authors.lastname: Irwanto
authors.affiliation: Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands.
authors.forename: Barbara
authors.initials: B
authors.lastname: Regeer
mesh_terms: D015928:Cognitive Behavioral Therapy; D003376:Counseling / Q000379:methods*; D006801:Humans; D007214:Indonesia / Q000453:epidemiology; D007918:Leprosy / Q000453:epidemiology / Q000523:psychology*; D028701:Patient Rights; D011788:Quality of Life; D058992:Social Participation; D057545:Social Stigma