InCLUDE study

Increasing collaboration and learning with under-served carers for diversity and equity

Background

The InCLUDE study was a co-produced sub-study conducted as part of the Reflective Fostering Study, an RCT evaluating the impact of the Reflective Fostering Programme.

It is widely recognised that people in clinical trials often do not represent the diversity of those in our communities. This means that the results of those studies may not translate to the real-world and trial interventions may not be deliverable or applicable to all those who may need them. We wanted the Reflective Fostering Study to be as inclusive as possible, so we could better understand the difference the programme can make for all foster carers in the UK. However data from the pilot study identified that some people were more likely to take part than others. Specifically, our study had fewer South Asian carers, male carers and kinship carers in the pilot phase of the study than we would expect based on national levels.

The InCLUDE project was asking three main questions:

• Who is the Reflective Fostering Study not including and how can we change this?
• How can we recruit more participants to the study in a representative and inclusive way?
• Who is less likely to be included in research generally and how can we change this?

We explored these questions in different ways, including reviewing other literature, speaking with experts and setting up the InCLUDE-ME Group composed of foster and kinship carers from the underrepresented groups.

Learning and resources

The InCLUDE team presented some key findings from the project at the ‘Health Services Research UK’ conference 2023, and were awarded an “Innovation in Inclusion” prize for their research. You can watch a presentation of our main findings here:

YouTube Widget Placeholderhttps://youtu.be/d7Fn1VSiVbQ?si=WazFH1t1kH10Fw8G

The research team

The InCLUDE project was led by Shayma Izzidien, Rachael Stemp, Sakab Akram and Sabbir Ahmed. The core team were supported by Prof. Nick Midgley, Dr Karen Irvine and Prof. Shivani Sharma.

Funding

This study was funded by the National Institute of Health Research (NIHR) Public Health Research (award number MIDGLEY127422).

Publications

A paper reflecting on our experiences of, and learning from, co-producing research in foster care was published in the journal Research Involvement and Engagement. The paper shares extracts from our reflective accounts, curated from diaries and memos kept by the core team throughout the project:

Izzidien, S., Stemp, R., Akram, S. et al. The lived experience of co-production: Reflective accounts from the InCLUDE project. Res Involv Engagem 10, 104 (2024). https://doi.org/10.1186/s40900-024-00639-2

A scoping review exploring representation of foster carers within research studies was published in the Journal of Adoption and Fostering: 

Stemp, R., Izzidien, S., Sharma, S., Irvine, K., Midgley, N. (under review) How inclusive and representative is research on foster caring in the UK? Findings from a scoping review. Adoption & Fostering. https://doi.org/10.1177/03085759251315749

Izzidien, S., Stemp, R., Ahmed, S., Akram, S., Flanagan, R., Irvine, K., Sharma, S., & Midgley, N. (under review). Promoting inclusive recruitment within children’s social care research trials: lessons from the Reflective Fostering Study’s InCLUDE project. Diversity & Inclusion Research.

Posters / Resources

Promoting inclusive recruitment within children's social care research trials: lessons from the Reflective Fostering Study's InCLUDE project 

• The lived experience of co-production: Reflective accounts from the InCLUDE project
• How inclusive and representative is research on foster caring in the UK?
• A-Z of Inclusive research