Stories of Significance: Understanding Change through Community Voices and Articulations

By means of the ‘Most Significant Change’ (MSC) technique, India HIV/AIDS Alliance listened to stories of more than 500 children, caregivers, and field project staff from the Global Fund programme on care and support for children called CHAHA in Andhra Pradesh, Tamil Nadu, Maharashtra, and Manipur states of India in 2009. It was, according to this document, a methodology in keeping with Alliance's community-based approach and their tradition of listening to and learning from the communities.

The MSC technique was selected as a form of participatory monitoring and evaluation in which children and their parents talked freely about changes in their lives  and some children drew pictures illustrating the change. The process involved the collection of 'Significant Change’ stories at the field level and systematic selection of the most significant of these stories by the communities and the organisations involved from all four states. Finally, the most significant of the shortlisted stories were selected at the national level by a group of selectors from Alliance India.

The key objectives of this study were:

• "To assess the intermediate outcomes, impact and potential for impact of the programme from the community and children’s standpoint; and
  
• To understand the significant changes made in the quality of life of children and families registered in CHAHA."

Four domains of change were identified for the study in consultation with the partners. Key findings are listed in a shortened format, including:

"Change in Quality of Peoples’ Lives

• Children and caregivers have developed positive attitude and self-confidence.
  
• Children appreciate the support towards continuing their education.
  
• Improved well being, better health, being able to socialise, make friends, and save money.
  

Change in Levels of People’s Participation

• Children and caregivers have been able to disclose their status, interact with people, and overcome feelings of being stigmatised by communities.
  
• Several of them are volunteering to promote prevention, care, and treatment messages and becoming role models for others.
  

Negative Changes (because of the programme)

• Fear of disclosure in the community with ORWs [outreach worker] visiting their house.
  
• Multiple burdens being borne by women apart from taking care of husband and/or children. The stories highlight deep pain that children of such women feel for their mothers.
• Perceived inability to continue providing care by elderly caregivers, and a feeling of hopelessness by children (especially orphans).
  
• Few stories in this domain show the disappointment experienced by children who were promised for certain favours by the ...[staff]  but did not receive them.

Changes in Staff’s Capacity.

• The doubts about the future, an unnamed fear, and the general poignancy in the stories are indicators.
  
• Most storytellers asked staff for more support - land, house, education support for children above 18 year, a job, a "business with a huge investment" amongst others."

Selected story excerpts are included to support the documents findings. A few of them follow:

Story from a child: "...The CHAHA ORW came to our house and told me to be happy and not sulk. He understood our situation and spoke to our neighbours and my friends and explained our situation to them. Now I have a lot of friends who understand my family situation and provide support. The change for me is that I am able to play along with others and share my food with them.”

Story from a mother: "My child is not afraid of people anymore....The most important change for me is that my child became a leader among his friends."

Stories from an ORW: "During the course of our home-visits, we never got this kind of in-depth information, especially from those children who live with their relatives." And, "Most of the relatives keep the double orphan children as helpers in the house and as they start earning, they might even start testing different [injectible] drugs."

The final domain includes significant findings from the reflections of ORWs. The study frames their contributions as: "reflective, powerful and backbone of the programme", and concludes that there is a need for enhanced skills in several areas such as interpersonal communication with young people and children, networking, and knowledge on HIV/AIDS. There was also a need felt by staff to revise some of the current programme strategies, including community mobilisation - which is described in the following way:

"Inclusive community mobilisation is . . .

• Working with the whole community - women and men, young people, and children
  
• Seeking to encourage individuals as well as the community to embark on a process of change
• Using multiple strategies over time to build a critical mass of individuals supportive of an approach based on rights and responsibilities
  
• Inspiring and creating a sense of citizen action among a cross section of community members
  

Comprehensive and dynamic Community mobilisation is not . . .

• Only raising awareness; only training
  
• Ad hoc or sporadic
  
• A series of one-off activities being ticked off
  
• Pointing fingers, blaming, assigning fault
  
• Top down programme implementation by an NGO [non-governmental organisation] to a community
  
• Neat and completed within short timeframes..."

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