Kathleen Humphries, Ph.D.
Kathleen Humphries, Ph.D., recently joined OHSU as director of the University Center for Excellence in Developmental Disabilities and associate director for research and academic affairs at the Institute on Development & Disability (IDD). Her research focus includes nutrition behavioral interventions for persons with disabilities and their support teams as well as health and developmental outcomes related to food habits and nutrition.
Where are you from and where did you study?
I’m from Ohio originally, but I attended the University of Oregon as an undergraduate because my family had moved here. I went to UC Davis for graduate school and earned my Ph.D. in nutrition science there. While at Davis, I studied with a nutritional geographer, Louis Grivetti. He had very broad interests in nutrition. As an example, he would go into caves and look at drawings and try to understand what people ate during the time the drawings were made. Drawings of children might indicate nutrient deficiencies and malnutrition with renditions of say, bowed legs or tummies that stuck way out, but the figures were otherwise very skinny. My work with him looked at social and cultural influences on what we eat and the health consequences of those choices. I am still very interested in this type of research, and because it’s a process-oriented interest, it can be applied to any group of people anywhere.
How did you get involved in nutrition research for people with disabilities?
I started working in disability about 15 years ago and sort of fell into it by happenstance, as often happens. What really drew me to the work is unraveling the complex influences on the food habits and nutrition-related behavior of adults who were living with disability and how that played out for their health, as well as independence and quality of life. Adults with intellectual and developmental disabilities are at higher risk for nutrition-related secondary conditions—a secondary condition being something that’s preventable and doesn’t necessarily have anything directly to do with the disability but the disability puts these individuals at risk for the condition. For example, obesity rates are higher in this population, but obesity is not a comorbidity of disability. However, adults with disability are at higher risk due to many influences, which are complicated and interwoven. Contributing factors can include support staff or care providers for those who need assistance with food-related tasks. These care providers bring all of their food issues and biases with them when they assist with purchasing and preparing food. Also, social and media influence seems to be greater with this population. They may eat more junk food, and part of that is about education, but part of it’s about being influenced. The consequences are such that there’s a narrower margin of health for these folks. The ramifications can be dramatic for a person who has a disability who becomes obese. They may have to move into a higher support setting and lose their independence as adults. Imagine losing your independence when you’re 35 years old and when it is entirely preventable? I get very worked up over the injustice of this; I am very mission oriented about it.
Where were you before coming to OHSU?
Before coming to OHSU about a year ago, I was at the University of Montana in Missoula and ran an independent, grant-funded research lab there for 18 years investigating these issues. I was affiliated with the University Center for Excellence in Developmental Disabilities (UCEDD) there and had a faculty appointment in the School of Public and Community Health Sciences.
What brought you to OHSU?
The UCEDD director position opened up here and it was both a fabulous opportunity for me and a place I felt I could make a difference. Most states only have one UCEDD, but Oregon has two. Here at OHSU, we’re focused on health, and the UCEDD in Eugene is focused on disability in education. We’re fortunate to be able to target these two areas in discrete ways.
What are you working on now?
As associate director for research and academic affairs, I work with other researchers and facilitate their research. Though it’s one step away from doing the research myself, it broadens research for me. Over the last year, I’ve tried to lay administrative groundwork and institute policies to free our researchers up so they can get their work done most effectively. Our clinical program at IDD is so strong—it’s been around for over 100 years—and our research teams are both independent and collaborative. It’s been rewarding to support their work. An example of what IDD is involved in is assistive technology, particularly in the area of communication. Charity Rowland, Ph.D., has an international research agenda and is involved in Design to Learn, an organization built by a group of IDD researchers and educators that develops assessment tools and teaching strategies for children and adults with severe disabilities. She collaborates with Melanie Fried-Oken, Ph.D., who has multiple projects, including ones with people who have locked-in syndrome, a condition in which most of the body is paralyzed but cognitive function is intact, helping them communicate.
As far as my personal research goes, I’m in the process of getting it started again and am bringing the work I did in Montana here to OHSU. Currently, I’m working in the community with people with disabilities who are living independently, as most of this population in Oregon does, either with family or on their own with needed supports. I’m trying to understand their food systems, the complexity of them. Once this is mapped out, we introduce some interventions or supports to help them manage this food system. When I was at the University of Montana, I created a product, Choice Food Routines for Independent Living, designed to help people with disabilities and/or their caregivers organize their food systems to set them up for healthy nutrition and sustainable food practices. I’m hoping to adapt this tool for Oregon and include it in a larger plan for all people with disabilities who receive services from the state.
This work is done with participatory methods. We have a number of partner groups that can serve in leadership roles: Parents who want their children to be independent and healthy, self-advocates who are living independently successfully, the support workers. Our partners include the Oregon Home Care Commission that trains personal support people in the state, and the Oregon Council on Developmental Disabilities and the Oregon Self-Advocacy Coalition. Oregon’s Parent Training and Information Center, FACT, the organizing group for families of children with disabilities in Oregon, is also involved. The drivers on some of these projects have been M.P.H. students from OSU, and as our new School of Public Health builds up, we’ll have even more students getting involved. My faculty appointment is with the School of Public Health. The interim dean, Elena Andresen, Ph.D., is a disability researcher who came from IDD, so I’m excited about the possible expansion of our programs through that school and the opportunity to support the new SPH with our active researchers’ participation there.
Our next step is to connect with service providers, brokerages, and the state to bring these interventions to the community. We’re trying to do more outreach and with the OHSU community and state to connect disability to the rest of the campus and community. We’re working with OCTRI to ensure people with disabilities are included in clinical trials and community work. NIH has made this a priority, so the IDD hopes to take the lead role in ensuring the inclusion of disability among the vulnerable populations targeted.
What do you like to do when you’re not at work?
I like outdoor sports and do quite a bit of hiking and cycling. I’m also involved in the arts and just started back up with ballet, taking a class once a week. I’ve also noticed that people like to come to Portland so I’ve been hosting a lot and doing touristy things with out of town guests. It’s a great way to get to know the city! I have two active teenagers so they and their exciting lives soak up all the rest of my time when I am not in the CDRC building!