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CBGs are often reliant on NGOs for support to operate with varying connections to other social and political support networks

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CBGs are often reliant on NGOs for support to operate with varying connections to other social and political support networks

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People affected by NTDs often experience loss of livelihoods, perpetuating the poverty-disability nexus. 

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People affected by NTDs have poor mental wellbeing and this element is often neglected within peer support group functioning

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People affected by NTDs have poor mental wellbeing and this element is often neglected within peer support group functioning

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People affected by NTDs do not have the skills, resources or support to practice self-care

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People affected by NTDs do not have the skills, resources or support to practice self-care

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assess needs at the beginning

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Catalitic facilitation, so members take lead /facilitate for ownership

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Catalitic facilitation, so members take lead /facilitate for ownership

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power dynamics (avoid paternalistic approaches)
explain purposa, rationale, benefits from the very beginning
Facilitation must recognize local power/context and needs to be empowering from the beginning

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eg livelihoods
At this stage leadership also evolves as resources needed to enter into a new opportunity needs to be managed and members capatized
Connect with community needs and build capacity on how to use existing channels such as schools, etc...

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Create platforms to discuss leadership, opportunities advocacy aspects, etc...

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Create platforms to discuss leadership, opportunities advocacy aspects, etc...

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trust based on knowledge which ultimatelity brings power
It is critical to transfere knowledge to members and new leaders
Create open and active forums to excahange knowledge

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must include monitoring/follow-up
The facilitator_NGO must become an observer as the group evolves. They will become passive facilitators (BUT STILL ACTIVELY INVOLVED)
sometimes a role of coordinator is useful. Leadership team:
- facilitator (health worker/NGOstaff)
- coordinator (NGO data collection)
- Group leader: CBG member

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NGOs/health system should play a facilitative role and support self-sufficiency, ensure full handover at end of (defined time)

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NGOs/health system should play a facilitative role and support self-sufficiency, ensure full handover at end of (defined time)

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Training on financial management and record keeping, clear guidelines on membership fees, clear roles and responsibilities (e.g. treasurer)

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Training on financial management and record keeping, clear guidelines on membership fees, clear roles and responsibilities (e.g. treasurer)

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Train group leaders to provide peer-peer counselling using BPS-N

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Train group leaders to provide peer-peer counselling using BPS-N

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Access to suitable resources for the group e.g. soap and oil,

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Access to suitable resources for the group e.g. soap and oil,

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Invite care givers (if necessary) at the very beginning

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Invite care givers (if necessary) at the very beginning

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Care givers need to be part of the group/training. Sometimes we tend to underestimate them as they are often very motivated
Sometimes is not posible to identify who needs external help to practice SC. Therefore, it is always good practice to proactively invite them in the training activities

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-Encourage home-based SC (follow-up necessary)
- Include care givers in the training
Explain disease consequences/ people reality (counselling

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Self-care groups for women, focusing on female empowerment, where self-care is included. Because self-care for women includes discussion based on cultural reality, the division of domestic work and the possibility of income.

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Connect with local supporters (community health workers)

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Connect with local supporters (community health workers)

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Establish linkages with livelihoods experts from other NGOs

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Establish linkages with livelihoods experts from other NGOs

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Training and demonstration by facilitator on self-care techniques with practical opportunities

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Training and demonstration by facilitator on self-care techniques with practical opportunities

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Identification of existing structures/ local know how

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Identification of existing structures/ local know how

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Assess needs continuously in monitoring visits

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Assess needs continuously in monitoring visits

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Facilitator needs to record identify unmet needs during visits, even if the facilitator takes a passive observer role, but still actively involved. Use monitoring to provide counselling

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A well-functioning CBG that is able to provide accessible and equitable livelihoods support in a sustainable way.

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A well-functioning CBG that is able to provide accessible and equitable livelihoods support in a sustainable way.

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Provision of monitoring and support for people affected practicing self care

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Provision of monitoring and support for people affected practicing self care

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A  network of CBGs operating with specific countries, regions, communities, that is locally owned and empowered to support themselves and advocate for their needs and rights in social and political spheres

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A  network of CBGs operating with specific countries, regions, communities, that is locally owned and empowered to support themselves and advocate for their needs and rights in social and political spheres

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A well-functioning CBG that can provide guidance and support to each other on core elements of self-care and individuals able to complete self-care activities. 

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A well-functioning CBG that can provide guidance and support to each other on core elements of self-care and individuals able to complete self-care activities. 

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A well-functioning CBG that integrates consideration of mental wellbeing, with members able to provide psychosocial support to each other and recognise when people may need more formal care. 

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A well-functioning CBG that integrates consideration of mental wellbeing, with members able to provide psychosocial support to each other and recognise when people may need more formal care. 

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CBGs are to have a sense of ownership at the start of the programme for self-sustainability

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Acknowledge that people affected by NTDs should have access to mental wellbeing knowledge and support services and making them aware of this as a critical first step

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Acknowledge that people affected by NTDs should have access to mental wellbeing knowledge and support services and making them aware of this as a critical first step

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Look for people who have lived experience with positive outcomes who could act as group leaders to support affected persons

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Look for people who have lived experience with positive outcomes who could act as group leaders to support affected persons

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PA with experience of mental health condition to be included as group leaders and maintain focus on wellbeing and share stories

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PA with experience of mental health condition to be included as group leaders and maintain focus on wellbeing and share stories

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Self help group to include those who have recovered can provide guidance to others in group (form of service provider)

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Self help group to include those who have recovered can provide guidance to others in group (form of service provider)

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Affected persons should be the leader of groups, but also links with service providers are critical. 

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Affected persons should be the leader of groups, but also links with service providers are critical. 

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Involve PA by providing training in leadership 

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Involve PA by providing training in leadership 

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Consider literacy and numeracy as part of group

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Consider literacy and numeracy as part of group

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Consider adding literacy and numeracy training within support group structures

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Consider adding literacy and numeracy training within support group structures

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mapping of mental health services that are available in the area

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mapping of mental health services that are available in the area

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develop a system where people can be signposted to the areas they need to be

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develop a system where people can be signposted to the areas they need to be

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The stigma and social isolation associated with leprosy have a significant impact on individuals affected by the disease. Historically, leprosy has been misunderstood, leading to fear, discrimination, and marginalization of those with the condition. This social stigma can contribute to mental health issues such as depression, anxiety, and low self-esteem.

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The stigma and social isolation associated with leprosy have a significant impact on individuals affected by the disease. Historically, leprosy has been misunderstood, leading to fear, discrimination, and marginalization of those with the condition. This social stigma can contribute to mental health issues such as depression, anxiety, and low self-esteem.

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Linking with existing MH and government services available

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Linking with existing MH and government services available

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 CHVs trained to ID possible PA NTDs to support referral of PA from community to facility with support of MH clinician at facility

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 CHVs trained to ID possible PA NTDs to support referral of PA from community to facility with support of MH clinician at facility

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Identify people for referral in coordination with TLM, PWLE, CHVs and refer together.  Have 5 parameters - anxiety, stress, depression, trauma, severe mental illness

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Identify people for referral in coordination with TLM, PWLE, CHVs and refer together.  Have 5 parameters - anxiety, stress, depression, trauma, severe mental illness

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Involve family to help PA with mental wellbeing

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Involve family to help PA with mental wellbeing

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educate service providers about needs of persons with NTDs for holistic care

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educate service providers about needs of persons with NTDs for holistic care

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use local government systems that are available. 

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use local government systems that are available. 

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PA have previous experience with livelihoods activities which can be considered e.g. weaving, but may no longer be able and so may need to seek alternative forms of livelihood and training that is possible for each PA

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PA have previous experience with livelihoods activities which can be considered e.g. weaving, but may no longer be able and so may need to seek alternative forms of livelihood and training that is possible for each PA

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Scoping to find out impact of condition on each person and suitable livelihood opportunities that are accessible for each PA

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Scoping to find out impact of condition on each person and suitable livelihood opportunities that are accessible for each PA

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Awareness within the community to reduce stigma  so that community will purchase goods produced by the groups

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Awareness within the community to reduce stigma  so that community will purchase goods produced by the groups

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Put suggestion to PA to identify what type of livelihood activity they want to be involved with, then provide seed fund to start

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Put suggestion to PA to identify what type of livelihood activity they want to be involved with, then provide seed fund to start

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Skill Training and Employment: Organize skill development programs within the self-help group to enhance the employability of members. This could include training in areas such as handicrafts, tailoring, agriculture, or any other relevant vocational skills. Help facilitate employment opportunities or initiate income-generating projects for SHG members based on their newly acquired skills.

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Skill Training and Employment: Organize skill development programs within the self-help group to enhance the employability of members. This could include training in areas such as handicrafts, tailoring, agriculture, or any other relevant vocational skills. Help facilitate employment opportunities or initiate income-generating projects for SHG members based on their newly acquired skills.

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Choice for PA to decide the most suitable option for them

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Choice for PA to decide the most suitable option for them

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What are the community aspects that will support PA to generate income - social aspect

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What are the community aspects that will support PA to generate income - social aspect

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Engagement in poverty reduction programs depending on what is available in each setting

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Engagement in poverty reduction programs depending on what is available in each setting

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Group decision about whether group or individual IGA, TOR to support this

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Group decision about whether group or individual IGA, TOR to support this

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Microfinance and Savings: Encourage members to save a portion of their income regularly through the SHG. Establish a microfinance system within the group where members can access small loans to invest in income-generating activities, such as small businesses, livestock rearing, or agricultural ventures.

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Microfinance and Savings: Encourage members to save a portion of their income regularly through the SHG. Establish a microfinance system within the group where members can access small loans to invest in income-generating activities, such as small businesses, livestock rearing, or agricultural ventures.

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The knowledge needs of leaders need to be considered. It will not necessarily be the needs of the project and the project needs to encourage the process of participation, construction and collective decision.

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Promote an exchange of experience: what do you want? how are you feeling? how are you experiencing this disease?

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Promote an exchange of experience: what do you want? how are you feeling? how are you experiencing this disease?

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need to begin by focusing on understanding what people understand by mental health/wellbeing. Could be considered as a highly clinical concept- what we define as a mental health issues- some people may not define it like that. There are positive connotations of disease too- it may be an opportunity for compassion and connection.

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Stigma and discrimination as the main links and challenges. We don't talk about the challenges of the family and community life- always talking about how people need to and should change their life- but don't discuss health promotion and what is necessary to facilitate this change e.g. the material living conditions (housing etc)

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problems need to be discussed in the broader context of living conditions. 

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problems need to be discussed in the broader context of living conditions. 

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need to partner with organisation who have expertise and resources for the supportive management of mental health issues (e.g. mhGAP) that we can rely upon to change situations. 

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need to partner with organisation who have expertise and resources for the supportive management of mental health issues (e.g. mhGAP) that we can rely upon to change situations. 

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peer-peer support systems can be established and simplified- there are often champions within groups that can provide empathy and support the healing process (not everyone in groups may have the skills to take on this kind of roles)

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peer-peer support systems can be established and simplified- there are often champions within groups that can provide empathy and support the healing process (not everyone in groups may have the skills to take on this kind of roles)

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we need to recognize and not forget stigma and discrimination that impacts families and caregivers. We need to support their mental wellbeing as well. Can self-help and community groups play a role in changing the pattern for these groups too. 

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we need to recognize and not forget stigma and discrimination that impacts families and caregivers. We need to support their mental wellbeing as well. Can self-help and community groups play a role in changing the pattern for these groups too. 

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family based visits are necessary to support learning between them and providing support to each other

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family based visits are necessary to support learning between them and providing support to each other

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Training of frontline health facility personnel to provide support to affected persons. Shortage of personnel- so training people on mhGAP we tried to get health workers to understand basics of mental health and manage affected persons. 

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Training of frontline health facility personnel to provide support to affected persons. Shortage of personnel- so training people on mhGAP we tried to get health workers to understand basics of mental health and manage affected persons. 