Patricia Scott

Participation in valued social roles: Seemingly simple on the surface.

Roles are sets of activities performed in a routine way, for example, work, friendship, volunteerism, hobbyist, or maintaining a home. The roles we participate in structure our lives, and govern the way we see ourselves and others see us. As life moves forward we develop habits and routines that enable us to meet the expectations of these various roles. Roles are the ‘how’ of social participation. Human beings we are social in nature, and make choices based on our interests and values. Through this social interaction we identify ourselves through roles, ‘I am a student at IUPUI’, ‘this is my sister Joanne’, and ‘David is an engineer who works with my brother-in-law’.

As an occupational therapist, Dr. Scott treated people with problems stemming, in part, from lack of participation in valued roles. Many of these people have trouble with role identification. It is socially awkward to say, ‘this is my brother who just got out of prison’, and ‘I cannot work because I have schizophrenia ’, or ‘I cannot attend because I lost my license for driving drunk’.

In 1997, Dr. Scott's own role identification was threatened. She was told her 20-year course of autoimmune hepatitis caused irreversible cirrhosis, and the only option was liver transplantation. She did not want to take on the role of a patient or a ‘sick’ person, and importantly she did not know how. She scoured the research literature for information that would help her understand what her life would be like during and after transplantation. She found very little. There is extensive evidence about the life saving aspects of transplantation, however, little to assist those individuals who struggle to return to life as they knew it before transplantations. And life after transplantation IS different. Aside from her own situation, as an occupational therapist, she realized if she had this problem, many others likely did also. She has since devoted herself to a research career with the goal of increasing the number of individuals who have access to information and health care services such that they can return to full meaningful participation in life post-transplant. Phase I, revealed that post-transplant participation in a higher number of valued roles as measured by the Role Checklist, is significantly associated with higher SF-36 scores. Phase II is a longitudinal study, measuring timing of return to activities of daily living and valued roles at 15 points over the first 2 years post-transplant. Phase III moved her work into determining the best interventions to support individuals struggling to resume meaningful life participation after transplantation. Her presentations and publications caught the work of colleagues.

Ironically, it was the innovative use, and modification of the Role Checklist, a long standing tool used by occupational therapists, which catapulted her work into the international spotlight. In 2012 she established a formal collaboration with International colleagues and now, in Version 3 of the Role Checklist, with tested translation guidelines and international cross-cultural validation studies in place, her aspiration to establish the first globally accepted measure of participation appears closer than ever.

Dr. Scott's work to enable more individuals to engage in full participation in society, not only following liver transplantation but through establish a cross-culturally valid role participation tool, is another example of how IUPUI's faculty members are TRANSLATING their RESEARCH INTO PRACTICE.