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Disclosure of PI-RRTC Grant
James S. Krause, PhD, Holly Wise, PhD; PT, and Emily Johnson, MHA have disclosed a research grant with the National Institute of Disability and Rehabilitation Research
The contents of this presentation were developed with support from an educational grant from the Department of Education, NIDRR grant number H133B090005. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.
Accreditation The Medical University of South Carolina is accredited by the
Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. The Medical University of South Carolina designates this educational activity for maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.
In accordance with the ACCME Essentials &Standards, anyone involved in planning or presenting this educational activity will be required to disclose any relevant financial relationships with commercial interests in the healthcare industry. This information is listed below. Speakers who incorporate information about off-label or investigational use of drugs or devices will be asked to disclose that information at the beginning of their presentation.
The Center for Professional Development is an approved provider of the continuing nursing education by the South Carolina Nurses Association an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation
Accreditation
The Center for Professional Development is an approved provider of the continuing nursing education by the South Carolina Nurses Association an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation
Disclosure of Presenter
Dr. Susan Newman, PhD, RN, CRRN, has disclosed three research grants:
Rehabilitation Nursing Foundation,
National Institute of Child Health and Human Development (to sponsor spinal cord injury rehabilitation research), and
South Carolina Clinical and Translational Research Institute (to sponsor spinal cord injury needs assessment research).
Objectives
At the end of the session, participants will be able to:
Recognize the issues encountered by people with spinal cord injury in the community setting
Consider an ecological view of spinal cord injury rehabilitation that addresses both the individual and the environment
Identify potential barriers and supports to optimal independence, health, and community participation after spinal cord injury
Rehabilitation to enhance and restore functional ability and quality
of life to those with physical impairments or disabilities
to help individuals affected by chronic illness or physical disability achieve their greatest potential, and work toward a socially integrated, productive, and fulfilling life.
Community integration and participation are often considered the ultimate goal of rehabilitation.
Introduction Spinal cord injury
Results in lifelong paralysis placing the individual with SCI at risk for social isolation and decreased productivity
Community Integration Discharging the roles and responsibilities that are
considered usual for someone of a specific age, gender, and culture
Participation Involvement in a life situation
(World Health Organization, 2001)
(Dijkers, 1998)
Background & Significance
Community Integration after SCI
Physical & psychological well-being after SCI affected by community participation
Positive correlation between CI and life
satisfaction
Inverse relationship between CI and mortality
(Forchheimer, Kalpakjian, & Tate, 2004)
(Roach, 2002)
(Krause, DeVivo, & Jackson, 2004)
Environmental factors play a significant role in community integration of individuals with chronic paralysis
Numerous descriptive studies of environmental
barriers to community integration after SCI Perception by people with SCI that shortened
inpatient stay prevents HCP from developing detailed understanding of living situation after discharge
The Problem…
(Fougeyrollas, 1995; Gray, Gould, and Bickenbach, 2003; Whiteneck, 2006)
(Kroll, Groah, Gilmore,& Neri, 2008)
Environmental Factors
Make up the physical, social, and attitudinal environment in which people live and conduct their lives
Are external to the individual
Can have a positive or negative influence
International Classification of Function,
Disability and Health (WHO, 2001)
Research question
What are the environmental barriers and facilitators to community participation in the Charleston, SC community, as perceived by 10-12 individuals with spinal cord injury (SCI)?
“Doing Disability Research” Disability scholars call for disability
research to follow critically oriented or emancipatory research paradigms (Oliver, 1992)
Participatory Research is…
The process of producing new knowledge by “systematic inquiry, with the collaboration of those affected by the issue being studied, for the purposes of education and taking action or effecting social change.” (Green, et al, 1994)
Community-Based Participatory Research
Brings people with disabilities to the research table as partners in the research process
Promotes local capacity building and empowerment of people with disabilities
Increased demand for community engagement in research by funding agencies
Partnership disAbility Resource Center
Center for Independent Living
North Charleston, South Carolina
Mission:
Advocate, Educate, Empower for a fully inclusive community
Developing the Partnership
Meeting with dRC board of directors during grant development
Discussed participatory research & development of a research partnership
Introduced Photovoice as research method
Collaborative decision making
Photovoice is a qualitative participatory research method
Capitalizes on the power of photography
Images teach.
Pictures can influence policy.
Goals of photovoice
Enable people to document the community from their perspective
Promote knowledge through discussion of photographs
Reach “policy makers” and other change agents (Wang & Burris, 1997; Wang, 2005; www.photovoice.com)
Research Design
Non-experimental qualitative study
CBPR approach
Photovoice method
Relevant to current trends in community engaged research
MUSC IRB approval
(Wang, 2003)
Methods Recruitment Participant criteria
Inclusion
Exclusion
Sampling
Purposive strategy for maximum variation
10-12 participants
Reflect age, race, and gender distribution of SCI population served by dRC
Sample (n=10)
Gender: 60% male
Age: 21-64 years (mean 42.1 years)
Race: 50% African American, 50% White
Time since injury: 2-36 years (mean 24years)
Level of Injury: 30% Cervical,
70% Non-cervical
Mobility: Wheelchair users, non-ambulatory
Methods Data Collection Photovoice training Taking pictures Individual Interviews Group discussions
Data Management Digital photographs Digital audio recordings & verbatim transcription NVivo 8 software
Data Analysis
Content analysis of interview transcripts
Analytic framework:
The International Classification of Function, Disability and Health
(World Health Organization, 2001)
ICF – Environmental Factors
Chapter 1: Products and Technology
Chapter 2: Natural Environment
Chapter 3: Support and Relationships
Chapter 4: Attitudes
Chapter 5: Services, Systems, & Policies
(WHO, 2001)
Results – Environmental Factors
Moving to Action… Advocacy
Accessible Parking Laws
Education
Capacity Building
Sharing our results with the public, rehabilitation professionals, other disability advocates,& policymakers
Parking measure clears Senate Bill aims to stop misuse of handicapped placards BY RON MENCHACA The Post and Courier Thursday, February 19, 2009
Parking advocate presses case in Columbia: Goose Creek woman lobbies senators on new bill BY RON MENCHACA The Post and Courier Thursday, January 29, 2009
Parking cheats, beware BY TONY BARTELME The Post and Courier Wednesday, December 16, 2009
The Next Steps
Expanding partnerships; Continued capacity building
Pilot Projects
NIH funding to develop an intervention, using CBPR, to address issues that surfaced during the Photovoice project
Partners!
Take home message
To be effective health care providers, we must understand the environments in which our patients/clients conduct their lives
Participatory research provides the platform to build on the complementary expertise of the researcher and the community to answer some of the most pressing questions in health care today.
Acknowledgements
Agency for Healthcare Research & Quality
R36 HS016941-01
Rehabilitation Nursing Foundation
New Investigator Award
MUSC College of Nursing
Stephen Stewart Dissertation Award
References Fougeyrollas, P. (1995). Documenting environmental factors for preventing the handicap creation
process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation 17:145–153.
Gray, D., Gould, M., & Bickenbach, J. (2003). Environmental barriers and disability. Journal of Architectural and Planning Research, 20(1), 29-37.
Kroll, T., Groah, S., Gilmore, B., & Neri, M. (2008). Consumer-directed teaching of health care professionals involved in the care of people with spinal cord injury: The consumer-professional partnership program. The Journal of Continuing Education in Nursing, 39(5), 228-234.
Wang, C. (2005) Photovoice: Method. Retrieved July 20, 2008 from
http://www.Photovoice.com
Wang, C. & Burris, M. (1997). Photovoice: Concept, methodology and use for participatory needs assessment. Health Education and Behavior, 24(3), 369-387.
Whiteneck, G. (2006). Conceptual models of disability: Past, present and future. In M. Field, A. Jette, & L. Martin (Eds.) Workshop on disability in America: A new look (pp50-66).Washington, D.C.: National Academies Press.
World Health Organization. (2001). International classification of functioning, disability and health. World Health Organization: Geneva.
Thank you!
Questions?
