Living With Disability: Life Stories From “Family” Members

Living With Disability:

Life Stories From “Family” Members

 

Principal Investigator:  Dr. Karen McComas

The International Classification of Functioning, Disability and Health (ICF) is a conceptual framework for classifying disability that goes beyond a medical or behavioral diagnosis.  Using the ICF model, we can identify different kinds of disabilities and different levels of disability through both a medical and social lens.  A key component of the ICF model is the understanding that disability is a function of health conditions and contextual factors.  Furthermore, disability may be experienced in one of three domains:  impairment (problems with bodily structures or functioning of those structures), activity limitation (decreased ability to perform specific actions), and participation restrictions (decreased involvement in the daily happenings of life).

There are numerous contextual factors considered by the ICF as having an influence on disability and health.  Among these are environmental factors, such as social structures or systems.  Important elements of social systems include support from, and relationships with, the people within an individual’s microsystem (i.e., family members, caregivers).  Given the relationship between contextual factors and health conditions (or disorders, such as those of communication) in determining the level of impairment, activity limitations, and participation restrictions an individual with a disability might have, it stands to reason that learning more about the relevant contextual factors relating to social systems at the micro-systemic level is critical to making appropriate diagnostic decisions and planning relevant therapeutic interventions.

This IRB application seeks approval to establish and maintain a database of narratives from adult individuals who have lived with and cared for a person(s) with a disability (PWD).  Such a database is an important first step to increasing our understandings of the micro-systems of PWD.  Thus, the purpose of this database is to (a) compile in one place a collection of life stories of the individuals in the microsystems of PWD, and (b) to make the life stories available to researchers who are engaging in studies that might be informed by these narratives.