The Siblings Research Group
Researchers from UCL and the University of Warwick work with siblings to help shape research at the first ever Sibling Research Advisory Group.
The Sibling Research Advisory Group (SRAG) is a collaborative multidisciplinary initiative organised by Mhairi McKenzie (UCL Institute of Child Heath, Population Policy & Practice), Georgia Pavlopoulou (UCL Institute of Education, Department of Psychology and Human Development LiLAS Lab) and Nikita Hayden (University of Warwick, Centre for Educational Development Appraisal and Research). Mhairi, Georgia and Nikita are currently PhD candidates looking at the wellbeing, relationships and experiences of siblings of children with a range of chronic health conditions or disabilities such as: cystic fibrosis and neurodevelopmental conditions such as autism, Down syndrome, and Williams syndrome.
The SRAG aims to inform and shape our research as well as other initiatives that involve young siblings. The siblings involved in the research group are viewed as experts of their own experience. By involving the public and engaging in research "with" siblings, rather than doing research "on" or "about" siblings, we hope our research will be more relevant and applicable.
The first SRAG meeting took place on Saturday 10th February at UCL Great Ormond Street Institute of Child Health. Ten siblings aged from 11 to 18 years old came along on the day. Siblings were introduced to the team, the purpose of the group, and the plan for the afternoon. Then they participated in an interactive training session on research terminology (including terms such as quantitative, qualitative, ethics and data). During the break they had time to socialise with each other and share as much or as little they wanted about themselves and enjoy snacks. After the break, each of the researchers asked for the input of the young people into their own research projects.
Mhari invited the siblings to consider which factors they believed to be important to include when looking at the wellbeing and mental health of siblings growing up with a brother or sister with a long-term health condition. Siblings engaged with each other in interesting conversations around the importance of siblings' health condition in terms of severity, the ethnic background of the family, the attitudes of their local community and family income.
Georgia presented to siblings how she collected data in two recent studies about the experiences, perspectives and needs of female teenaged sisters growing up with a preverbal autistic sibling. Georgia explained how she involved the teenagers in all stages of her research by collecting and analysing their own data using a community-based, participatory research methodology. She also presented how she aims to expand on her visual qualitative research protocol for a new project looking at siblings' school experiences, needs and perspectives. The siblings in the SRAG gave feedback on a recruitment poster. Interestingly, the young people highlighted some potential ethical issues which could arise from the use of photos and suggested solutions. They also identified inter-related sub-domains and areas they believed would be worthwhile to explore in the life of siblings. For instance, when considering school experiences, they highlighted areas such as homework routines, sleep the night before, arrival at school, break time (particularly if their brother or sister attended the same school) and relationships with school staff.
Last but not least, Nikita wanted the input from the young people on her new qualitative project. She asked the young people who attended SRAG to consider two themes that were identified as currently being under researched: school experiences and sibling relationships. Siblings worked in pairs and shared their ideas about the importance and their interest in the two topics. Both were recognised as important by the young people, however most siblings identified a particular interest in the sibling relationships topic.
The whole team were really pleased with how well the young people engaged and received invaluable feedback on their research as well as the potential future of the group.
In terms of the future of the group, it is the intention of the team to apply for funding to be able to facilitate more meetings for the SRAG like this. All but one of the young people who attended the SRAG indicated that they would like to attend future groups, highlighting that they enjoyed the afternoon and found it interesting. One sibling stated "I liked it a lot because it gave us a chance to discuss" and another sibling said the part of the group they liked the most was "inputting my info to researchers and helping solve questions". The feedback from the siblings who participated highlights how this group could be valuable to not only researchers but also to the young people.
If you would like to be kept up to date with how the Sibling Research Advisory Group develops please feel free to get in touch with one of the team. Alternatively, if you would like more information about Research Advisory Groups across the UK we recommend visiting the Generation R website. Alternatively the Family and School Partnership domain of LiLAS Lab is also recruiting a range of family members for their advisory panel, including siblings.
Contacts and links
Mhairi McKenzie - UCL Institute of Child Health - firstname.lastname@example.org
Georgia Pavlopoulou - LiLAS project and Linkedin - email@example.com
Nikita Hayden - University of Warwick CEDAR - firstname.lastname@example.org
If you are a sibling or parent looking for support please visit the Sibs charity website.