Reducing social isolation for adults with chronic communication disabilities

PROJECT ABSTRACT
Social isolation is a major contributor to poorer health outcomes, quality of life, and even survival. Adults with
communication disabilities are at a high risk for social isolation because communication impairments make it
difficult for them to interact with others. Many communication disorders in adults are chronic, thus restoring
typical communication abilities to enable people to resume usual participation in daily activities is not feasible.
For that reason, people with communication disabilities depend on accommodations in the environment to help
them remain active and engaged. Communication inherently involves interactions among people. Thus, the
most critical environmental accommodation (or barrier) is the behavior of people – the communication partners
- with whom the person interacts. The term ‘perceived social support’ is often used to refer to the help that
people feel they have available to them in times of illness or disability. Our prior research has identified that
perceived social support, as defined and measured in general healthcare domains, is not adequate for
capturing social support for communication as shaped by physical, attitudinal, and behavioral barriers in the
environment. Furthermore, family members who might usually provide such support may be hindered because
of how they are impacted by the communication disability themselves (third-party disability) through increased
care burden and loss of emotional connections. Qualitative research suggests that communication partners are
highly influential in keeping people with communication disabilities active in work, home, and social activities.
However, little is known about: 1) the extent and nature of perceived social support for communication and how
this influences life participation for people with communication disabilities, 2) the extent to which families
experience third-party disability and how this impacts social participation for people with communication
disabilities, and 3) the extent to which these phenomena are similar across different communication disorders.
Speech-language pathologists are called to provide patient-centered, biopsychosocial care addressing all
contributors to communication disability. However, the significant gap in our understanding of the role of socio-
environmental factors in life participation has left clinicians with sparse empirical foundations or clinical tools for
addressing the socio-environmental needs of clients. The long-term goal of this research is to help people with
communication disabilities and their families reduce social isolation and engage in fulfilling life participation by
improving environmental accommodations / social support for patients and reciprocal support for families. The
aims of this survey-methods study are to explore the hypothesis that perceived social support for
communication is a unique construct that contributes to life participation separately from the general concept of
perceived social support used in healthcare. This study will also explore how third-party disability contributes to
reduced communicative participation. The populations included are those with speech or voice impairments
due to Parkinson’s disease, laryngeal dystonia, laryngectomy, and oral-pharyngeal cancer.

Grant Number: 5R01DC019352-05
NIH Institute/Center: NIH
Principal Investigator: Carolyn Baylor