T7: State-of-the-Science Conference on Community Integration for Persons with TBI
Roundtable Discussion - April 12, 2007
Topic Area: Cultural Issues
Facilitators: Fabricio Balcazar, Ph.D. and Juan Carlos Arango-Lasprilla,
Ph.D.
Recorder: Angelle Sander, Ph.D
- What research should be addressed in the future to further
the field and address the most relevant gaps in our knowledge? What models/methods
should be utilized?
- The representation of minority groups in research studies, particularly
in longitudinal studies such as that of the NIDRR-funded Model System
Centers, is disproportionately lower relative to their representation
in the actual population. This is especially a concern given that
the incidence of TBI is higher in African Americans and in Hispanics
relative to Whites. Thus, we know little about long-term outcomes
in persons from different racial/ethnic groups, and how they may be
differentially impacted by certain interventions. Future research
should focus on inclusion of persons from minority backgrounds in
the same proportion to their numbers in the general population. To
facilitate this, recruitment could be conducted in hospitals or clinics
that serve low income and ethnically diverse populations.
- Current measures used to assess functioning and outcomes lack sensitivity
for different groups of people. Research is needed to:
- Translate existing measures into different languages.
- Ensure that existing measures capture outcomes and values that are
important for persons from different cultures (e.g., capture priority
activities for certain cultures, such as dancing for certain Hispanic
cultures).
- Create new measures that have multicultural sensitivity.
- Research is needed to determine the influence
of different belief systems on outcomes and
on utilization of services. One example is
in the area of health beliefs. Persons from
some cultures may hold beliefs that are not
consistent with the health care system in
the United States (e.g., beliefs in spiritual
healers; beliefs in herbal remedies; beliefs
in healing through prayer). These beliefs
may impact a person's willingness to seek
help through our traditional health care system
and may also impact outcomes. A further example
is differences in beliefs about responsibility
for persons with disability. While the American
culture generally subscribes to a "individualistic"
philosophy, believing that each person is
responsible for their own care, with secondary
responsibility of immediate family members
for each other. In other cultures, the philosophy
is more "collectivist", with societal
responsibility for caring for persons with
disability. Differences in these belief systems
may impact outcomes and utilization of services
after TBI, and should be researched.
- Existing research on racial/ethnic differences in outcome has minimally
accounted for the role of socioeconomic status (SES). Since many minorities
in the United States live below the poverty level, differences in SES
may be the true cause of differences in outcome that are attributed to
race/ethnicity. Future research should focus on determining the impact
of SES and its interaction with race/ethnicity.
- The perception of disability often differs in different cultures, and
can impact a person’s community integration or their willingness
to seek services. For example, in some cultures TBI may be viewed as
shameful and family members may want to hide the fact that a loved one
has sustained TBI. Research on perceptions of disability in person from
different racial/ethnic backgrounds could help to understand their experience
of community integration and their utilization of services.
- Accessibility of resources to persons from different racial/ethnic
groups should be researched. Accessibility includes availability of services
and information in different languages, consistency of services with
different value systems, comfort level of consumers with certain medical
professional (e.g., psychiatrists), and transportation/location issues.
- The role of acculturation is becoming increasingly important, as persons
from other countries are immigrating to the United States and then having
children who may be more entrenched in American value systems. Race/ethnicity
alone may not explain differences in outcomes, since persons of the same
race may have different levels of assimilation into the U.S. society.
The role of acculturation in predicting outcomes should be a topic of
future research.
- What collaborations could be fostered to address this
topic area?
- Multi-site studies are more likely to capture an adequate proportion
of persons of different races/ethnicities and should be fostered. If
possible, grantees should be encouraged or even required to partially
recruit from facilities that serve primarily persons from minority groups.
- Collaborations between TBI Model System Centers and hospitals, clinics,
and community agencies serving minority groups should be encouraged.
- Health care professionals and researchers would benefit from cultural
immersion training. RRTCs on minority/cultural competency issues might provide
such training to other researchers.
- Collaborations with other countries that utilize
community-based models of health and rehabilitation
should be fostered (e.g., Tedd Judd's work
in Nicaraugua; home-based behavioral training
for parents of children with developmental
disabilities in Peru.
- Many persons from minority groups receive a great deal of support from faith
institutions. Collaborating with faith-based organizations can foster community
integration and assist in inclusion of these persons in research.
