Promoting Peer Support in Bangladesh: Experiences from the AHEAD Project Heather Aldersey Mohammad Morshedul Quadir Lea St-Andre Karass Justyne Russell

Outline Overview of AHEAD project Overview of Peer Support Methods Preliminary Results Discussion

Access to Health and Education for all Children and Youth with Disabilities (AHEAD) Project International Centre for the Advancement of Community Based Rehabilitation (ICACBR) Centre for the Rehabilitation of the Paralysed (CRP) Funded by Global Affairs Canada 2013 - 2017

AHEAD Project Improve access to quality, gender sensitive health and education services by removing environmental, attitudinal, and knowledge barriers Strengthen the capacity of education and health service providers to provide inclusive, quality services to girls and boys, and youth with disabilities Strengthen/implement disability policy frameworks to protect and promote human rights of children and youth with disabilities, particularly girls.

Peer Support “The giving of assistance and encouragement by an individual considered equal who shares a similar experience to the service recipient” (Dennis, 2003). Overall aim of a peer support program is to foster empowerment and independence, encourage self-determination, provide practical assistance to members, and advocate at varying levels in a given system (Chamberlin, Rogers, & Ellison, 1996; Vayshenker et al., 2016)

AHEAD Peer Support Programming Four module training Peer support basics, peer counseling techniques, policy, human rights & advocacy. Peer support workshops AHEAD Project Peer Support Office Peer support groups Livelihood training & skills development

Research Questions How has the peer support initiatives of the Access to Health and Education for all Children and Youth with Disabilities in Bangladesh (AHEAD) project impacted participants? What lessons learned and suggested improvements could be provided by past AHEAD peer support participants for application to future peer support programming in similar contexts?

Methods Ten interviews 6 mothers, 2 young women, 2 young men Targeting at least 10 mothers, 10 youth with disabilities Audio-recorded, transcribed, & translated Recursive analysis, using group consensus on inductive & deductive codes. Could you please tell me about your experience with disability? Probe: how long with disability, family member with disability, type of disability, experience receiving disability services from CRP/elsewhere. What does the term “peer support” mean to you? How have you experienced peer support in your life? (probes – received? Given? In what circumstances?) What do you know about the AHEAD project’s peer support office? What has been your involvement with this office? How would you describe your relationship with the peers that you have met through AHEAD? In your opinion, when can peer support be beneficial? When might it be not very beneficial? What are the challenges or hurdles to your regular participation in peer support programming? What are the greatest benefits that you have seen through your participation in the peer support programming of AHEAD? What new information have you learned through peer support? What new skills have you gained through peer support? How has peer support changed the way that you interact with a. your family, b. your neighbours/community? What negative consequences have you encountered because of your participation in peer support? (e.g, family conflict? Inter-personal conflict with PS members?) What aspects of the AHEAD peer support program would you like to see changed/improved/done differently? Is there anything else that you would like to share with us about peer support that we have not already discussed today?

Preliminary Results

Pre Peer Support Family Attitudes “I have a husband and a mother-in-law. I had to struggle to come here because they forbid me to come here. My mother-in-law told me to leave the baby in the name of Allah and give birth to another child.” External Stress “My main problem is that I have no relative to keep my baby, there is no other person in my family. This is my greatest barrier to attending training, today I faced this problem.” Personal Knowledge of Disability “I didn’t know about the rights of the persons with disabilities. I lived at Narayongonj and there are so many people with disabilities and also many children with disabilities who don’t know where and when to go about treatment or how to fulfill any other of their needs.”

During Peer Support Relationships “We are like a family and here [at the CRP] there are many brothers who will supply all the important information with us and all time we communicate with others, we also share and discuss all the things with each other.” “...A normal human being does not understand me, perhaps a person like me can easily understand my sorrows and also I can share my thoughts to them.” Information “I’m capable to stand for my rights as for example when we journey through a bus, we just try to sit at the allocated seat for the disabled people. Such things I’ve learned from peer support.” Relationships = Support & mutual understanding Information = Disability & advocacy

Post Peer Support Personal Growth “Before I did not go out alone and I needed help of my parents because I was afraid. Now I can do all this myself.” “[I learned] skills of running a workshop in my district as well as presentation skills.” Community Engagement “Now I try to explain to mothers with disabled children at my village about therapy… I try to raise awareness like… do not isolate the disabled child, let the child play with others within society etc. I inform the mothers where they can get the therapy and peer support. I introduce my child to them.” Personal Growth = Empowerment & Skills Development

Lessons Learned and Improvements Importance of family Recruitment/retention Content of PS training Value of linkages to livelihoods & skills development

Discussion Agreement among participants that Peer Support training: Created/facilitated/improved relationships with others with similar experiences Increased knowledge about disability, rights, and advocacy Outcomes of Peer Support related to personal growth & development as well as community engagement & advocacy

Thank you! Heather Aldersey International Centre for the Advancement of Community Based Rehabilitation hma@queensu.ca Mohammad Morshedul Quadir (Rimon) AHEAD Project, Centre for the Rehabilitation of the Paralysed rimonmecahead@gmail.com