Respite: Centering the Lived Experience - an interview with Dr. Roberta Woodgate
ENRRICH researcher Dr. Roberta Woodgate has spent her impressive career focusing on families in Manitoba and across Canada. An early adopter of understanding the value and role of child, youth, and family partners, we asked her questions about the importance of involving partners in research, and about her recent knowledge translation videos focusing on respite care. The videos mentioned in the article can be viewed here.
Can you explain the importance of working directly with families, children, and youth in research?
You can learn so much from your partners, no matter their role. If you really want your findings to thrive outside of the project and have greater uptake, it is imperative to involve those who are directly impacted by your project. In addition, the research will be better and more meaningful to undertake!
How did you initially get involved with working with partners with lived experience?
When I first started research, it wasn’t the norm to ask children and families to participate in qualitative methodologies that focus on asking them about their lived experiences. I started with consulting family advisory committees on certain projects to now having young people participate as co-researchers on the research team. In all my projects children and their families share their lived experiences by participating in arts-based activities such as photovoice which involve them taking photos to document their experiences.
Do you have any advice for researchers who haven’t yet involved families, children, or youth in their research?
The most important part is creating space where they can safely and comfortably share their voice. Just like with any co-worker, you might not always agree but their perspectives are extremely important to listen to.
Family partnership was a key part of your recent research translation videos about respite care. In these videos and the paper that inspired them, you mention “respite is for everyone” as a guiding principle. What does this mean in practice and how can we move towards this?
We need to remember that respite needs will look different for every family. As exemplified in the videos, there are different challenges faced by parents, siblings, rural families, and immigrant families. Although respite care might look straightforward on paper, there are always barriers that pop up that make accessing care difficult. If we can eliminate barriers and make needs-based decisions rather than group or diagnosis-based decisions, we really can make respite accessible for all.
How do you hope the family perspective respite videos will be used?
I believe knowledge translation is a very important role and responsibility that researchers have. I wanted to use these videos to reach as many people as possible, but especially stakeholders who make financial decisions about respite access. I think it is important for everyone to gain perspective on how meaningful this care is for those living with these experiences every day. There are mental and physical health benefits of respite care for the whole family, and the more people who see that the better. It is important to note that respite is not considered a luxury to these families. Even if it isn’t your family requiring the respite care, we wanted to make it clear that this does impact all Manitobans.
Can you share some future research you are currently working on?
We are currently working on a study examining the effects of COVID-19 on families with children with different needs in conjunction with SSCY (Specialized Services for Children and Youth) and ENRRICH (Excellence in Neurodevelopmental and Rehabilitation Research In Child Health). We also just received CIHR (Canadian Institutes of Health Research) funding to work with 9 co-researchers across Canada who are young carers between the ages of 14 and mid-20s. We want to learn more about their experiences caring for siblings or parents at their age. Another study that we just received five-year funding from CIHR involves us working with youth, families, and service providers to improve equitable and inclusive access to mental health and substance use services and equitable outcomes for youth attending youth hubs across Manitoba.
To learn more about Dr. Woodgate’s research, consider reading these publications.
About the Author
Dr. Roberta L. Woodgate (she/her/hers) is an internationally renowned Child/Youth researcher who holds a prestigious Tier 1 Canadian Research Chair in Child and Family Engagement in Health Research and Healthcare. An integrated knowledge translation approach that engages children, youth and families in the co-design of research is a cornerstone of her research program entitled ‘IN•GAUGE.’ Roberta researches the perspectives and lived experiences of children and youth across a wide range of health conditions and disabilities and challenging life events by employing innovative and arts-based participatory research methods for knowledge production and translation. As well, Roberta adopts a human rights-based approach that provides critical information for exploring young people's perspectives and lived experiences. Roberta uses child and youth friendly methodologies and innovative, art-based approaches in integrated knowledge production and translation strategies that help children and youth express themselves. Roberta’s research works to improve the well-being of children and youth and their families.