Using participatory methods to analyze Balancing Act data

| 19 June 2025 |

Balancing Act has just reached the end of its milestone second year. We spent much of our first two years building relationships with our partners, launching our project in each of our six case partner sites, and then working collaboratively on training data collectors and executing data collection.

After months of data collection, we are now working our way through the analysis of interview transcripts that have been conducted with almost 200 participants, with persons with disabilities, their families and communities, and organization staff members, from Guatemala to Bangladesh.

As far as possible, we are following a community based, participatory action research methodology. We have a talented academic team comprising over a dozen graduate students and several co-investigators, led by Principal Investigator Heather Aldersey, that has been busy with inductive and deductive coding of transcripts. Our participatory methodology creates opportunities for our non-academic partners to engage with data analysis too. We have been working with the data collectors that were trained in qualitative methods to conduct interviews for Balancing Act to engage in participatory analysis of the same datasets.

Study Advisor Dr. Mary Wickenden led the design of participatory analysis workshops which have now taken place in a variety of different modalities in the UK, USA, Bangladesh, and Guatemala, with other participatory activities taking place in Mozambique*. Here, we present a roundup of how these were planned in each site, and the findings emerging from them – both from a methodological sense but also in terms of the analysis of the data.

Design

To begin each session, data collectors were given access to their own interviews and reflections to help refamiliarize themselves with the data at the start of the session. Data collectors were then each asked to come up with some words or phrases to describe their own, individual, key takeaways from the data. In conversation with each other, guided by facilitators, each group then drew links and connections between these ideas, sorting them together as themes that could describe key components of the overall case.

United Kingdom

In the UK, Mary facilitated an in-person participatory session, which reunited the seven parent carers who had been recruited as data collectors some months prior. Conversation flowed, and there was a healthy debate around how to structure emerging themes (i.e., whether to illustrate Amaze’s work in a linear fashion, or to describe the case in a more thematic fashion). By the end of the four-hour session, the group had settled on four main themes: the journey, family, peer support, and services.

Bangladesh

Mary was joined online by co-investigator Reshma to co-facilitate a hybrid session for the four Bangladeshi data collectors, who worked together in the same space in the offices of CDD in Savar. Data collectors identified six key themes that emerged from the data: (i) Sadness, (ii) Problems, (iii) Thinking, (iv) Gratefulness, (v) Satisfaction, and (vi) Needs/Demands. The participants also articulated what they see as the key messages to take away from this case too:

Government support is needed
Training for caregivers
Education for children with disabilities
Transportation services
Acceptance of disability by neighbours

United States

The same team who worked with Community Choices to train data collectors in summer 2024 – Heather, Meghan, Caitlin, and Tom – returned, virtually, to facilitate a participatory analysis workshop over Zoom with the American contingent. In this session, everyone joined remotely, and so the team made use of online mindmap tool Miro. A big takeaway from this discussion was how the mission of Community Choices means something so different to its two main member types: parent/carers, and self-advocates. Making space for and honouring both sides of this organization will be paramount going forward.

Guatemala

The Guatemala session brought together data collectors in-person in Cubulco, while bilingual facilitators Valeria and Martina led the session over Zoom with Tom. As in the United States, we collectively built a detailed virtual mindmap, bringing together ideas, phrases, and feelings that came up in the interviews into thematic clusters. It was a, interesting challenge to conduct this session across two languages, but that challenge actually prompted a deeper reflection on the choice of labels we have to each themes, as we worked together to find consensus.

These participatory analysis workshops not only enabled meaningful engagement with the data by the community-recruited data collectors but also created a valuable opportunity to reconnect and nurture our relationships with each other and with the project at large. The guidance from data collectors will be taken into consideration, alongside the full thematic analysis of all documents, to craft our initial findings, which we will take back to the larger community in each case site in the summer and fall of 2025, to get further feedback and directions on study findings and next steps. With a case study of this scale, our engagement with our partners might ebb and flow, and so to be able to collaborate again on data analysis is not only important for the project’s forward progress, but it also essential for maintaining strong relationships with partners who will continue to have a significant role to play as we look ahead towards mobilizing the knowledge they have helped to gather over the past year.

*The Mozambican data collectors had the opportunity to participate in a debrief session with a member of the academic team soon after collecting data, which followed a different format to the participatory analysis sessions described above that all took place months after data collection.

School of Rehabilitation Therapy