Lioness Ayres

What is the focus of your research?

I study family response to chronic illness across the lifespan. I have done research with family caregivers of teens and adults with chronic illness and disability, worked on a study of how families manage a school age child’s chronic illness, and how young adults with impaired mobility make the transition to adulthood. The overarching theme of my research is self- and family management, not just of the chronic condition (that is, how families provide good care and how people with disabilities take care of themselves) but also how individuals who have or are caring for someone who has a chronic illness manage their own responses. For families, that means how they define the illness and the person who has it and the way that definition influences the strategies they use to provide care and to care for themselves. For young adults with disabilities, that means how they manage the various challenges presented both by their functional limitations and by a social world that is often uncongenial to people with functional limitations.

I am especially interested these days in how big social systems like schools and health care systems facilitate or impede social participation and good health for people with a variety of health conditions but especially mobility impairment.

What led to the development of interest in this topic?

I have always been interested in family caregiving. Before I was an academic, I was a home health and hospice nurse. When I went back to school and began to look at the literature, I was amazed at the descriptions of caregivers – they seemed so pitiful and passive, not at all like the active agents I knew from my practice. That got me interested in families.

I became interested in people with impaired mobility during my postdoctoral fellowship at Oregon Health and Sciences University, when I had the opportunity to work with a Center for Independent Living. I noticed that children with disabilities had wonderful support as long as they were in school, including coordinated programs for both health care and social participation. Then once school was over, they had few supports and also had to face a fragmented adult health care system designed for persons with acute and chronic conditions but not for people with disabilities.

Similarly, there were workplace regulations to provide accommodations for persons with disabilities under the Americans with Disabilities Act but there were no transition programs available to help these young people get jobs or to manage their everyday affairs (how to balance a checkbook, find an apartment, manage a Personal Care Attendant). As a result, some young adults with impaired mobility were remarkably unsophisticated and consequently were exploited. So I set out to see what could be done about that.

What impact do you predict coming from this research?

I would like to see disability integrated into both medical and nursing school curricula – currently it has no place. I would like to see adult health care systems provide the same quality care for people with disabilities that they do for people with heart disease and cancer. I would also like to see family caregiving destigmatized. Caregivers are not seen as morally tarnished, as is often the case with stigma, but they are pitied, and many say that caregiving would be much easier if they were viewed as ordinary people rather than as self-sacrificing altruists. Finally, I would like to see the public school system do more to prepare young adults with disabilities for active participation as citizens rather than as objects of charity or pity.

How does the research integrate into education/practice/service?

Right now my research is mainly descriptive. I would like to see UI take a leadership position in providing advance practice nurses to provide holistic care to people with disabilities but that will require a commitment of resources that, in these difficult times, may be unrealistic to expect.

In my undergraduate teaching, I provide my students with a half-day orientation to the Center for Disabilities and Development which helps to sensitize them to issues about disability when they see them in the public schools to which they are assigned.