Supporting siblings and families of disabled people
To mark National Siblings Day earlier this month (Saturday 10 April 2021), we heard from Nikita Hayden, Research Fellow from the Centre for Educational Development, Appraisal and Research (CEDAR) and Louise Rixon, PhD student at the University of Warwick about their personal and professional experiences of working with family disability charities in their research.
National Siblings Day serves to celebrate and recognise the importance of brothers and sisters. This day aims to honour sibling bonds and relationships by encouraging siblings to appreciate one another.
Nikita Hayden, Research Fellow at Warwick said:
"Sibling relationships are important. They are one of the few relationships that have the potential to last across our lifetimes. Children learn and develop social behaviours from their sibling relationships that in turn inform future relationships. General sibling research also tells us that better quality sibling relationships are associated with better mental health in both children and adults.
"Sibling relationships may be particularly important for siblings where one of them is disabled. These siblings may be important sources of support, care and advocacy. Beyond siblings’ potential to provide care, siblings may offer friendship and support where elsewhere in society, many disabled people continue to face exclusion and discrimination.
"I have recently finished my PhD in the Centre for Educational Development, Appraisal and Research (CEDAR) at the University of Warwick. My project explored the psychological outcomes of siblings of children and adults with learning and developmental disabilities as well as their sibling relationships.
"I was drawn to this project because I am a “sibling” myself – as my younger brother is autistic.”
Growing up with an autistic brother
“I think my relationship with my brother was, and is, very similar to the relationships of other siblings. As his older sister, I would often do things to take care of him. As children we would have frequent moments of mutual adoration, and then, almost simultaneously, fall into spells of bickering. As adults, I can see how reciprocal our relationship has become in recent years and how important our relationship is to both of us.
"A lot of sibling research focuses on siblings being a source of care and support for their disabled brothers and sisters, but my experiences make me feel, or perhaps assume, that one of the most fundamental roles siblings can fulfil for one another is that of a friend.”
Research with Sibs charity
Nikita’s PhD was a Collaborative award with the Economic and Social Research Council Doctoral Training Centre at the University of Warwick and the UK charity Sibs.
Sibs is the only UK charity devoted entirely to supporting siblings of disabled people.
This collaboration with Sibs has involved Nikita evaluating their school-based intervention and developing a large-scale adult sibling survey. The findings of these studies have helped to guide some of Sibs’ work.
Nikita said:
"For a small charity such as Sibs, being able to draw on my research work (and my supervisor’s research expertise whilst I was still developing my own!) has allowed them to ensure that their work with siblings is informed by evidence.
"Working with Sibs has also meant that I have been able to learn a great deal from their team’s expertise and experience in order to develop my work. Through Sibs, I have also been able to work directly with siblings throughout my PhD – and remind myself how varied our experiences are as siblings.
"I was able to learn so much from working with the Sibs team, and I believe the research was richer and more valuable to siblings and families because of Sibs’ input. My ongoing collaboration with Sibs means that our research actually gets read by those people in the best position to support siblings. I also get to discuss with Sibs how the research might inform their work and I get to share my research directly with siblings and families through Sibs’ network and events.
"This “real-world” applicability of my research is very important to me. Fundamentally, I want to help people, and applied research feels like a meaningful way for me to try and achieve that.”
Nikita now volunteers with Sibs as their Research Associate. This involves continuing to advise and support Sibs from a research perspective, and working with them to develop future research.
Similarly, Louise Rixon from CEDAR has been interested in Sibling research for a long time, from understanding where a child fits in the family dynamic and what makes them tick, to understanding how siblings engage with each other and how they affect each-others’ growth and progression.
Louise Rixon, PhD student said:
“My real passion for sibling interactions though, came about from a very personal source. My youngest child was born with a hearing impairment. Subsequently, he was diagnosed with global development delay, severe autism, and learning disabilities. Although growing up with a sibling who has complex needs and is non-verbal has not always been easy for his sisters – they do have a very close relationship and they are fiercely protective of him."
Working for Bridges charity in Monmouthshire
Louise has been fortunate enough to be able to combine both her PhD research whilst also working for the Bridges charity in Monmouthshire as Project Coordinator and Team Lead, an organisation that supports families of children with additional needs and disabilities. Much of her work also includes supporting siblings and working to ensure that they have access to support and activities alongside their brothers and sisters with disabilities. Building family resilience and reducing social isolation are key aspects of the work that they do, and aim to provide safe, non-judgmental spaces for siblings to enjoy time together.
Louise said:
"Our Lottery funding has allowed us to provide activities such as accessible surfing with Surfability, climbing, and activity days. During the pandemic, we have been able to offer a wide range of home activities and events. These activities provide a space for siblings to enjoy time together. This is important because so few activities accommodate both children with disabilities and their non-disabled siblings together. Many of the children we support have brothers and sisters with more complex needs. Working with these children has inspired me to explore sibling relationships further in my PhD.
"My PhD research explores the outcomes of siblings of children with autism. My particular area of interest is about siblings of children with severe autism and complex needs.
"I recently published my first paper. We found that severe autism and complex needs of a child did not necessarily equate to poor outcomes for the siblings. In fact, this group had the lowest reported conflict amongst the different autism groups within our study. It was the siblings of the children with a mild autistic profile but high levels of behavioural and emotional problems that appeared to have higher levels of behavioural and emotional problems themselves.”
Louise, a PhD student at Warwick, will continue her research to explore the outcomes of siblings of children with severe autism and complex needs using further survey data. Her next steps include exploring sibling relationships where one sibling has severe autism and complex needs using interviews.