3.2 Consent from vulnerable groups
In Session 2, you considered consent. This is especially important for including vulnerable groups and individuals in research. Participants need information in a format they can understand, including what the research means and what will happen to their words or images at dissemination stage. Adapting consent for vulnerable groups will depend on the capacity or age of the participants as well as acknowledging socio-economic factors.
Activity 6 Making adaptations
Timing: Allow approximately 5 minutes
Complete the matching exercise below, thinking about what and who, adding the corresponding number alongside the ‘who’.
Then think about why, as you work through the rest of the session.
| HighlightedWhat – example of adaptation | HighlightedWho – example of vulnerable participant | HighlightedAdd the corresponding number (1 to 5) |
| Highlighted1. Information sheet with pictures | Participants sharing sensitive information | |
| Highlighted2. Observation of body language and emotional reaction | Children and families | |
| Highlighted3. Cartoon to explain research | Baby or child with limited capacity to withdraw | |
| Highlighted4. Providing a counsellor for follow-up support | Low literacy | |
| Highlighted5. Different versions of consent form – short and long | Children and adults with different reading skills |
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Think about how making adaptations shows respect for everyone, not just participants in vulnerable groups. Keep thinking about why as you read the following case study.
Answer
| What – example of adaptation | Who – example of vulnerable participant |
|---|---|
| 1. Information sheet with pictures | Low literacy |
| 2. Observation of body language and emotional reaction | Baby or child with limited capacity to withdraw |
| 3. Cartoon to explain research | Children and families |
| 4. Providing a counsellor for follow-up support | Participants sharing sensitive information |
| 5. Different versions of consent form – short and long | Children and adults with different reading skills |
Case study 4.2 ‘To honour the stories of the girls’
Alison Buckler and Liz Chamberlain worked with the charity PLAN in Zimbabwe to understand how better to support out-of-school girls in rural areas.
The group of girls were vulnerable because of their age, gender and socio-economic status and because of their experiences of marginalisation in school or dropping out of school. This research involved community education projects and, for some, involvement in research at workshops. There were issues of safety to consider when inviting girls to the workshop and issues of respect to think through in hearing stories of loss and hope as stories emerged.
The researchers took steps in their research to ‘honour the stories of the girls’. Think about the following examples of adaptations the researchers made to show respect for this group:
- providing a workshop schedule in visual non-literate forms, respecting the interrupted schooling of the group
- checking more than once about permissions to share the stories with different audiences or only some audiences, respecting that a young person may change her mind
- providing psychosocial support with a trusted counsellor at the workshop, respecting the personal nature of the stories shared
- using some of the ambitions of the girls to create female role models in education materials.
Activity 7 Showing respect in dissemination
Timing: Allow approximately 10 minutes
Listen to the audio of Alison and Liz talking about their research.
Download this audio clip.Audio player: e822_2020j_aug015a.mp3
Transcript
DEBORAH:
Hello, welcome. I’m Deborah Cooper, one of the authors of the module. I’m joined here today by Dr Alison Buckler and Dr Liz Chamberlain, both from the Open University.
They join me to talk about how they developed their research project on Zimbabwean girls who have dropped out of school.
Liz, Alison, thank you very much for joining me today. Liz, I’d like to start by asking you how you came to choose this particular topic and why you thought it was important.
LIZ:
Thank you Deborah. I thought first of all it might be helpful to explain the origins of the research and how it connects to a broader project that I work on. So, I’m the academic director of a programme called SAGE which stands for Supporting Adolescent Girls Education. And this is one of DFID funded project and DFID is the Department for International Development. And the project involves five consortium partners led by an NGO called Plan International. And it’s one, just one of the Open University’s international education development projects which is based in Zimbabwe.
And I thought it might be helpful just to give you a bit of context around the project. So, we know that there are over 130 million girls who do not go to school. Most of them are in the world’s poorest countries. In Zimbabwe 20.1% of secondary school aged girls are not attending school. So the SAGE programme, which is based in Zimbabwe was therefore designed to reach over 16,000 out of school girls aged ten to 19, over a five year period.
And what we hope to do is to engage them with learning in literacy, numeracy and English language learning.
The aim of the acquisition of these foundational skills will be for the girls to really benefit and make changes in their everyday lives. For example, girls being able to go to the market to buy and sell produce. And to be able to check their change to make sure that they’re getting the right amount of change.
What we know about the girls that we’re working with in the programme, they’re from the poorest districts of Zimbabwe. And these girls face a number of complex and independent barriers to accessing education which includes gender, age, religion, economic status, ethnicity and disability. And we also know that girls limited access to education is underpinned by pervasive gender inequality.
This research gives us a unique opportunity to match the programme to the girls’ needs. We need to know about these particular girls and one way that we can do this is to involve girls in the research process.
For this small group of eleven girls we worked with in what we call the SAGE storytelling research through a five day residential workshop it was important and possibly the first time that the idea that those girls ideas and experiences have actually been acted upon.
DEBORAH:
Thanks Liz. And Alison can you tell me more about the importance of this study and who’s going to benefit from it please?
ALISON:
So, this is a three-year study of a group of eleven girls from across Zimbabwe. And the research is following them as they participate in the SAGE programme.
We’re now one year into the research. And this has been a form of a week-long storytelling research workshop which focused on the girls’ ideas about their future.
A key part of the research was to find out more about the girls’ lives. To ensure the programme was as appropriately designed as possible.
First, as Liz suggested, we wanted to know more about the girls aspirations so we could tailor the materials to provide learning experiences that supported these aspirations. And therefore help girls on the programme move on to pathways that could genuinely lead towards those professions.
And as well as that we wanted to develop a programme so it could expand these aspirations. One of the co-researchers on the, the team that was leading this research, Dr Faith ???(00:04:14) who’s a Zimbabwean academic has written about the aspiration horizons of young people in sub-Saharan Africa. And she writes about how many young people growing up in policy are presented with a very narrow horizon of possible opportunities for their future.
I think also we knew that formal school had not worked out for these girls because they were, they’d dropped out of school at some point. And so another key focus of the research was to understand more about their experiences of formal schooling and their reasons for dropping out.
And this was really, really important because it, it was really, it’s really crucial that the SAGE programme doesn’t simply replicate formal school. And then just provide another opportunity for girls to feel like life wasn’t designed for people like them. Or, you know, give them another thing that they have to drop out of and, you know, be in the same situation they are now, but even worse.
And so, we know from the literature that exists that a main reason for dropping out of school in Zimbabwe is a lack of money and SAGE is free. So this is a really good start. But we also knew that school dropout is, is really complex and it’s not just about the money even if that ends up being the final reason given for the girls dropping out of school.
We designed this research to really understand more about the events that led up to the point at which the girls dropped out.
And then finally while there’s some existing research about out of school girls in similar contexts that we draw on, on the planning there respect when we were designing it, we’ve noticed that much of this research was undertaken within the context of existing education programmes.
And so what we were really keen to do for this first stage of the research was to engage the girls and meet them. And learn about their lives before they joined SAGE to find out more about their experiences without them feeling like they have to filter these through a kind of specific lens of the programme goals. Or shaping their stories to align with what they thought that we might want to hear.
And we did all that using a storytelling approach that focused on critical moments in their lives where something happens that changed the course of the future. And we asked each girl to tell a story about this critical moment.
DEBORAH:
Liz, Alison, thanks very much for joining me today.
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Then think about:
- what might Liz Chamberlain have meant by ‘honouring the stories of the girls’?
- what were the possible negative consequences the researchers were hoping to avoid in their behaviours?
- what wider take away messages does this offer for a planned ethical stance to sensitive topics and vulnerable groups?
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This study was included to illustrate how respect was shown for data, for participants’ voices and life stories which aimed to shift the power from the researchers towards the participants.
To find out more about the SAGE work in Zimbabwe and other international Open University education projects, see the SAGE website [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] (make sure to open this link in a new tab/window so you can easily return to this page).