Interventions to Educate An Underserved Population About Inherited Disease Risks
| Status: | Completed |
|---|---|
| Conditions: | Healthy Studies |
| Therapuetic Areas: | Other |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/21/2016 |
| Start Date: | February 2007 |
| End Date: | December 2007 |
Using a Communication Intervention to Provide Information About Inherited Risk to Underserved Latino Communities
This study will examine how to communicate with an underserved population about inherited
disease risks. It will present information about inherited risk to a Latino population
through either a lay health advisor (LHA) or through printed information. The LHA is a
member of the Latino community who has received training in public speaking, group
facilitation, and managing group dynamics and in family health history and genetics.
Previous studies have shown that an LHA can effectively communicate health information to
diverse audiences, but such interventions have not been studied in the context of inherited
risk.
Spanish-speaking Latino men and women over the age of 18 in the Oakland, CA, and Washington,
DC, areas who have basic Spanish reading and writing skills may be eligible for this study.
Participants are recruited to one of two groups. One group participates in group educational
sessions with an LHA about inherited disease risks and family health history, and the other
receives this information from a brochure.
Educational Sessions
Groups of 5 to 8 individuals complete a questionnaire and then participate in a 45-minute
educational session on concepts related to genetics, family health history, lifestyle and
environment. Participants engage in role-playing to practice discussing family health
history with family members. The LHA teaches participants the skills needed to fill in
family health history tool called My Family Health Portrait and answers questions. After the
question and answer session, participants complete a second questionnaire.
Brochure-Only
Participants complete a questionnaire and then read a Spanish-language brochure produced by
the U.S. Surgeon General's Office about the importance of knowing one's family history. They
then complete a second questionnaire.
disease risks. It will present information about inherited risk to a Latino population
through either a lay health advisor (LHA) or through printed information. The LHA is a
member of the Latino community who has received training in public speaking, group
facilitation, and managing group dynamics and in family health history and genetics.
Previous studies have shown that an LHA can effectively communicate health information to
diverse audiences, but such interventions have not been studied in the context of inherited
risk.
Spanish-speaking Latino men and women over the age of 18 in the Oakland, CA, and Washington,
DC, areas who have basic Spanish reading and writing skills may be eligible for this study.
Participants are recruited to one of two groups. One group participates in group educational
sessions with an LHA about inherited disease risks and family health history, and the other
receives this information from a brochure.
Educational Sessions
Groups of 5 to 8 individuals complete a questionnaire and then participate in a 45-minute
educational session on concepts related to genetics, family health history, lifestyle and
environment. Participants engage in role-playing to practice discussing family health
history with family members. The LHA teaches participants the skills needed to fill in
family health history tool called My Family Health Portrait and answers questions. After the
question and answer session, participants complete a second questionnaire.
Brochure-Only
Participants complete a questionnaire and then read a Spanish-language brochure produced by
the U.S. Surgeon General's Office about the importance of knowing one's family history. They
then complete a second questionnaire.
How to effectively educate the public about inherited risk is an important communication
issue now and will likely become even more important over the next decade. Little research
has been conducted, however, to examine how to communicate about this topic with individuals
from underserved populations. The planned study provides a unique and innovative opportunity
to examine how to reach an underserved community and present information about inherited
risk in an understandable and usable form by building upon an existing relationship between
NHGRI and the National Council of La Raza (NCLR). NCLR has previously designed a culturally
tailored lay health advisor (LHA) intervention designed to increase knowledge and awareness
about inherited risk among Latinos and to motivate them to seek information about their
family history. The primary objective of this study will be to examine the pathways by which
the LHA communication intervention impacts information seeking outcome variables. We will
examine the roles of possible mediating variables (i.e., perceived information need,
conceptual knowledge, self-efficacy) and assess the effects of contextual variables (i.e.,
family and personal history of disease, genetic beliefs, acculturation, health care access,
sociodemographic variables) on the outcomes. The second objective is to provide quantitative
data on the effects of the intervention on information seeking outcome measures (i.e.,
discussing family history with family members and health care providers) by comparing the
intervention to a brochure-only condition; these data can inform the planning of a
large-scale randomized controlled intervention trial. A third objective is to examine
predictors of intention to seek information about family history at baseline. A
quasi-experimental design will be used; we will recruit 350 individuals to participate in
the LHA intervention and 200 to a brochure-only comparison group. All participants will be
Spanish-speaking healthy volunteers who are at least 18 years of age and have basic Spanish
reading and writing skills. Participants will be recruited through community-based clinics
in Oakland, CA and Washington, DC and will either participate in a LHA or be asked to read
information about family history. They will complete brief, self-administered questionnaires
in Spanish before and after participating in the intervention or reading the brochure.
Because of the quasi-experimental design, multiple logistic regression models will be used
in the analysis in order to control for covariates. Understanding how to effectively inform
underserved communities about inherited risk is a research area of critical importance if
genomics is to be used to benefit the public health.
issue now and will likely become even more important over the next decade. Little research
has been conducted, however, to examine how to communicate about this topic with individuals
from underserved populations. The planned study provides a unique and innovative opportunity
to examine how to reach an underserved community and present information about inherited
risk in an understandable and usable form by building upon an existing relationship between
NHGRI and the National Council of La Raza (NCLR). NCLR has previously designed a culturally
tailored lay health advisor (LHA) intervention designed to increase knowledge and awareness
about inherited risk among Latinos and to motivate them to seek information about their
family history. The primary objective of this study will be to examine the pathways by which
the LHA communication intervention impacts information seeking outcome variables. We will
examine the roles of possible mediating variables (i.e., perceived information need,
conceptual knowledge, self-efficacy) and assess the effects of contextual variables (i.e.,
family and personal history of disease, genetic beliefs, acculturation, health care access,
sociodemographic variables) on the outcomes. The second objective is to provide quantitative
data on the effects of the intervention on information seeking outcome measures (i.e.,
discussing family history with family members and health care providers) by comparing the
intervention to a brochure-only condition; these data can inform the planning of a
large-scale randomized controlled intervention trial. A third objective is to examine
predictors of intention to seek information about family history at baseline. A
quasi-experimental design will be used; we will recruit 350 individuals to participate in
the LHA intervention and 200 to a brochure-only comparison group. All participants will be
Spanish-speaking healthy volunteers who are at least 18 years of age and have basic Spanish
reading and writing skills. Participants will be recruited through community-based clinics
in Oakland, CA and Washington, DC and will either participate in a LHA or be asked to read
information about family history. They will complete brief, self-administered questionnaires
in Spanish before and after participating in the intervention or reading the brochure.
Because of the quasi-experimental design, multiple logistic regression models will be used
in the analysis in order to control for covariates. Understanding how to effectively inform
underserved communities about inherited risk is a research area of critical importance if
genomics is to be used to benefit the public health.
- INCLUSION CRITERIA:
All participants in this study will be healthy volunteers. Eligibility criteria for
participation in the study are the following: (1) being at least 18 years of age; and (2)
being able to speak Spanish and having basic Spanish reading and writing skills.
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