Title

Addressing health inequities in adults with intellectual disabilities through engagement in community-based participatory research

Start Time

21-10-2011 3:30 PM

End Time

21-10-2011 4:00 PM

Session Type

Event

Abstract

Objective: This paper reviews a study in progress that utilizes Photovoice as a method of including people with intellectual disabilities in research. Preliminary results will be presented along with lessons learned. The author hopes to use this forum as an opportunity to discuss options for improving research done with marginalized groups.

Introduction: People with intellectual disabilities (ID) have been identified as being more sedentary and having more health concerns than people without intellectual disabilities. Although the health conditions recorded in this population are largely preventable, health promotion interventions have been slow to meet these needs. It is disturbing how rarely the literature represents perspectives collected directly from this group, considering the marked health inequities they experience. Neglecting to include them in research or relying on proxy measures of their health promotion needs and experiences decreases the effectiveness of interventions. Every effort should be taken to avoid marginalization of this vulnerable population. Until practitioners utilize the perspectives of this priority population to develop interventions they may be representing the concerns of only academia and caregivers thereby contributing to the daily experience of health inequities. The methods chosen for any research study including people with ID must be accessible and provide the opportunity for data collection and analysis without risk of misrepresentation.

Methods: The aim of the study is to identify and define those factors that may act as determinants to participation in healthy lifestyle behaviors through the direct solicitation of information from the participants, 30 adults with intellectual disabilities. A community-based participatory research (CBPR) method is used, based on a partnership between researcher and participants. This joint venture includes the participants in the research development and process and incorporates the insights and lived experiences of the participant’s thereby co-creating knowledge. Photovoice, the method chosen for this study, follows the guidelines of CBPR, offers equity of power, and is accessible to people with ID regardless of skill level. This method offers a voice to a community that often goes unheard when more traditional data collection methods are used.

Photovoice methods will identify attitudes towards health, understanding of health related issues, and contextual factors related to healthy lifestyle behaviors, as perceived by the participants. Research participants will take photographs of their context and experiences as they relate to health and health barriers. The results will combine data from photo-elicited individual interviews, group discussions, and contextual observations of the participants. A public exhibit of the photographs and outcomes is scheduled. The author hopes to use this forum as an opportunity to discuss options for improving research done with marginalized groups.

Discussion Questions:

  1. Are there non-traditional research methods and/or data collection techniques that can be utilized to optimize research participation of people with intellectual disabilities?
  2. How can researchers complete data collection and analysis without risk of misrepresentation of marginalized groups?

References

Cooper, C. M., & Yarbrough, S. P. (2010). Tell me show me: Using combined focus groups and photovoice methods to gain understanding of health issues in rural Guatemala. Qualitative Health Research, 20, 644-653. http://dx.doi.org/10.1177/1049732310361894

Hergenrather, K. C., Rhodes, S. D., Cowan, C. A., Bardhoshi, G., & Pula, S. (2009). Photovoice as community-based participatory research: A qualitative review. American Journal of Health Behavior 33(6), 686-698. http://dx.doi.org/10.5993/AJHB.33.6.6

Lorenz, L. S., & Kolb, B. (2009). Involving the public through participatory visual research methods. Health Expectations, 12, 262- 274. http://dx.doi.org/10.1111/j.1369-7625.2009.00560.x

U. S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2005). HP2010 Midcourse Review. Retrieved from http://www.healthypeople.gov/data/midcourse/html/focusareas/FA06ProgressHP.htm

Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory need assessment. Health Education & Behavior, 24(3), 369-387. http://dx.doi.org/10.1177/109019819702400309

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Research paper

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Oct 21st, 3:30 PM Oct 21st, 4:00 PM

Addressing health inequities in adults with intellectual disabilities through engagement in community-based participatory research

Objective: This paper reviews a study in progress that utilizes Photovoice as a method of including people with intellectual disabilities in research. Preliminary results will be presented along with lessons learned. The author hopes to use this forum as an opportunity to discuss options for improving research done with marginalized groups.

Introduction: People with intellectual disabilities (ID) have been identified as being more sedentary and having more health concerns than people without intellectual disabilities. Although the health conditions recorded in this population are largely preventable, health promotion interventions have been slow to meet these needs. It is disturbing how rarely the literature represents perspectives collected directly from this group, considering the marked health inequities they experience. Neglecting to include them in research or relying on proxy measures of their health promotion needs and experiences decreases the effectiveness of interventions. Every effort should be taken to avoid marginalization of this vulnerable population. Until practitioners utilize the perspectives of this priority population to develop interventions they may be representing the concerns of only academia and caregivers thereby contributing to the daily experience of health inequities. The methods chosen for any research study including people with ID must be accessible and provide the opportunity for data collection and analysis without risk of misrepresentation.

Methods: The aim of the study is to identify and define those factors that may act as determinants to participation in healthy lifestyle behaviors through the direct solicitation of information from the participants, 30 adults with intellectual disabilities. A community-based participatory research (CBPR) method is used, based on a partnership between researcher and participants. This joint venture includes the participants in the research development and process and incorporates the insights and lived experiences of the participant’s thereby co-creating knowledge. Photovoice, the method chosen for this study, follows the guidelines of CBPR, offers equity of power, and is accessible to people with ID regardless of skill level. This method offers a voice to a community that often goes unheard when more traditional data collection methods are used.

Photovoice methods will identify attitudes towards health, understanding of health related issues, and contextual factors related to healthy lifestyle behaviors, as perceived by the participants. Research participants will take photographs of their context and experiences as they relate to health and health barriers. The results will combine data from photo-elicited individual interviews, group discussions, and contextual observations of the participants. A public exhibit of the photographs and outcomes is scheduled. The author hopes to use this forum as an opportunity to discuss options for improving research done with marginalized groups.

Discussion Questions:

  1. Are there non-traditional research methods and/or data collection techniques that can be utilized to optimize research participation of people with intellectual disabilities?
  2. How can researchers complete data collection and analysis without risk of misrepresentation of marginalized groups?