A Psychologist and Researcher Leverages Personal Experiences to Change Developmental Disability Paradigms

Rajiv: What is your caregiving experience, right now and in the past?

Yona: I’m a daughter, sister, wife, and mother to three children. My relationship to caregiving started early on with my sister who has a developmental disability. She’s three years older than me; we grew up together until I moved out when she was in her early 20s. I’m actively involved in her life today, and as she and my parents age I have become more involved in caregiving.

More recently, I helped care for another sister who had an intensive cancer experience. She died four years ago. I’d say that the time I spent supporting her in her illness along with my other sister really helped me garner a good bit of healthcare experience, and a deeper understanding of what it is like to be a caregiver.

What is your professional background? Your field of expertise?

I’m from Canada, but went to school in the US to train as a clinical psychologist because they had more specialized training there in developmental disabilities. (A lot of what I do now focuses on research, despite my clinical background). I direct a research program at the Centre for Addiction and Mental Health, which is probably the largest mental health and addictions research facility in Canada. I focus on the mental health of older youth and adults with developmental disabilities. In studying their mental health, I’m also made aware of the mental health of their brothers and sisters, as well as their parents. I believe that promoting individual mental health is very much tied to promoting family mental health; they are inextricable. I look at caregiving closely from a mental health perspective: what are the stresses associated with familial caregiving? How do we promote caregivers’ mental health? I do a lot of work trying to understand both the patient experience within the healthcare system, as well as the family’s situation.

I think I’ve become interested in the stressors and trauma experienced while in hospital in great part because of my personal experiences in hospital with my own family. How we deal with those things, how people navigate that reality, it’s really fascinating to me. For instance, think about someone who can’t articulate what they need in terms of their health care … that’s often the case for people with developmental disabilities. So the question becomes: how do we effectively communicate with the family, their doctor, the emergency physician, and so on, to ensure these patients are receiving the care they need and deserve.

One of the programs I direct is called H-CARDD, which stands for Health Care Access Research and Developmental Disabilities. It’s a province-wide program here in Ontario. The H-CARDD program was developed to address disparities in health status and health care access faced by individuals with developmental disabilities. We study health care patterns at the individual and the population level, and we work together with stakeholders to figure out what these numbers mean, and design solutions to improve care based on that.

How has your caregiving experience informed your professional life? And vice versa?

Sometimes it feels like every time I’m involved in a health care interaction I sort of wish I didn’t have to be [laughs] but I do my best to learn from it. Through both my research, and my personal experience with both of my sisters, I know how important it is to really try to listen to myself and understand how things around me are impacting me. I think that helps me to step into someone else’s shoes a bit more easily, while still recognizing the uniqueness of everyone’s experience. For example, if I’m struggling to navigate or manage what’s happening with all the skills and expertise I’ve garnered, how must a patient or caregiver without that knowledge feel? What does that experience look like for them? You see really interesting parts of the healthcare system from my perspective. I’m thankful for it, but also have to recognize its impact.

My caregiving and professional realities are part and parcel to one another, really. My experience doesn’t speak to everyone’s, but I do think that working in healthcare and having these personal experiences within the healthcare world has made me much more aware of what people are dealing with when it comes to doing my job, and doing it well.

Do you think that caring for your sister influenced your decision to go into this field at all?

Yes, in different ways, and at different stages in our young lives. We shared a bedroom growing up so I spent a lot of time with her. Sometimes she was my responsibility. I think I became good at that type of work very early … I was comfortable around her peers, too, so being around people with disabilities was eventually just my norm. Now, looking back, I learned so much from them. But honestly, it wasn’t until I was taking my first psychology class that I realized all the things I was learning in the classroom were applicable to people with developmental disabilities. The catch: they — that is people with developmental disabilities — weren’t in the psychology textbooks. When it came to studying mental health, they were remarkably absent.

I’ve researched that gap, and how it affects these people’s well being, for upwards of 20 years, though I didn’t really start focusing on families and the caregiving experience until more recently. I have my own family now, and as I watch my parents and sister age, I’ve become more comfortable integrating my own experience with my work. There’s an inherent challenge to mixing work and pleasure, or in this case, work and reality. But as time’s gone by, and as I’ve figured out how things work best in my research, it’s become easier to tell my own story authentically and with applied expertise. Instead of one thing hindering the other, I’ve made the two parts mutually beneficial. I’ve discovered that sharing and integrating aspects of my personal experience into my work feels more honest and allows me to connect with others in a way I couldn’t do otherwise.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

To be a good caregiver you have to care for yourself. Recognizing that balance is imperative. I know I’m not the only person who does this, but I’ll often start a presentation with that image of the air mask on a plane where they say ‘always put the mask on yourself before the child.’ That rings true here, too.

Also, recognizing that your own story and experience is perhaps the one certain thing you will always own. So how you choose to share your story or don’t is important. Caregiving has an impact on us in so many ways, but how you share your experience does, too. How it’s received and how you react. Just know that you will always own your story, no matter how it’s received by others. Honour your own experience and the experiences of those that you love and support. That’s very important.

Interviewed: 2 November 2018, by Rajiv Mehta; edited by Julia Rubano

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