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e11Abstracts / Disability and Health Journal 2 (2009) e1ee15
Christopher Reeve. The media plays a powerful role in providing society
with information to become educated upon, develop opinions about and
demand action for. Media analysis illustrates the type of information
being provided to society.
Methods/Design: Quantitative trend analysis (1998-2007) was completed
for US news print media (549 sources) followed by thematic content
analysis of major publications (NYTimes, Washington Post, Associated
Press, USA Today). Relevant news items were identified through
LexisNexis using key words (spinal cord injury/disease, research,
rehabilitation and cure). Annual trends were further examined with
monthly breakdown analysis juxtaposed with world headline events
potentially affecting reporting frequency.
Results: Analysis revealed a steady annual increase in SCI research related
articles with a larger number focused on cure versus rehabilitation. Topical
focus included stem-cell research, future of research grants, robotics use,
cloning and the work of Christopher Reeve. Two reporting spikes (2001,
2004) and a lull (2003) were identified. Further analysis suggests
association of these trends with headline events, particularly the Iraq/
Afghanistan wars and the stem-cell research debate.
Conclusions: Media content review is useful in documenting trends to help
ascertain information being disseminated. Understanding public
representations and perceptions is essential for contextualizing funding
and research priorities. This analysis demonstrates the translation and
possible shaping of a research niche by global and domestic events.
Creating inclusive disability communities
Katharine Hayward, PhD, MPH, Tarjan Center, UCLA, Berkeley, CA
Previous studies indicate a hierarchy of acceptance for people with
varying types of disability, where people with mental retardation or
a psychiatric disability are less accepted than people with physical
disabilities. However, research among people with disabilities assessing
how they view others with disabilities is nearly nonexistent. This study
explores whether a hierarchy of acceptance of people with disabilities
exists among those with disabilities and seeks to describe factors
contributing to it. College students with disabilities (n 5 102) completed
questionnaires that included items on social distance, disability identity,
and contact with others with disabilities. Findings from this study
demonstrated a stable hierarchy of disability among people with
disabilities consistent with earlier research. Social distance did not vary
by respondent’s disability. Contact with others with disabilities was
found to be significantly related to social distance. Findings also
indicated that being White, having a close friend with a disability, and
a father who was college educated increased social acceptance of others
with disabilities. This study has several implications for the importance
of anti-stigma campaigns in increasing social participation of people
with disabilities.
Just what the doctor ordered: Medical-legal partnerships to achieve
improved health for low-income children with disabilities
Yael Bina Zakai, Attorney (Esq) , Health Access Project, The Children’s
Law Center, Washington, DC
Health providers can address the medical needs of poor families, but
legal barriers often stand in the way of sustained improved health
outcomes for needy children with disabilities. Medical-legal partnerships
address the non-medical needs of low-income children by adding
a lawyer to the treatment team. For example, despite appropriate pediatric
care, a child with juvenile rheumatoid arthritis and learning disabilities
struggled with daily joint pain, lack of academic progress, and impaired
social-emotional functioning due to his school’s failure to provide him
with needed special education services. In collaboration with the
pediatrician, an attorney effectively advocated for this child to receive the
necessary school services. Consequently, he no longer suffers from daily
joint pain and his health has improved.
While medical-legal collaboratives began as hospital-based operations,
the Health Access Project (HAP) at Children’s National Medical Center
locates attorneys onsite at community pediatric clinics throughout
Washington D.C. in neighborhoods where underserved families reside,
increasing access to legal services for needy families with children with
disabilities. Because HAP lawyers work from offices inside the clinic,
medical staff can consult directly with them when legal intervention is
needed. HAP attorneys have improved health outcomes for many children
through advocacy in special education, access to health care, public
benefits, family law and housing matters. HAP attorneys also provide
trainings for clinic staff to educate them about legal issues facing their
patients, and provide legal rights trainings directly to parents and
caregivers of children with disabilities to empower them to advocate on
their own behalf.
Reliability of the PEONIES approach to consumer-centered to long-
term care quality assurance/quality improvement
Sarita L. Karon, PhD, Center for Health Systems Research and Analysis,
University of Wisconsin - Madison, Madison, WI
Barbara Bowers, PhD, School of Nursing, University of Wisconsin-
Madison, Madison, WI
Kay Hutchison, MS, Center for Health Systems Research and Analysis,
University of Wisconsin - Madison, Madison, WI
Donna Kopp, RN, MS, Center for Health Systems Research and Analysis,
University of Wisconsin - Madison, Madison, WI
Kim Nolet, BS, School of Nursing, University of Wisconsin-Madison,
Madison, WI
Brenda Ryther, RN, MS, Center for Health Systems Research and Analysis,
University of Wisconsin - Madison, Madison, WI
The PEONIES approach is a unique method of assessing and measuring
the quality of community-based long-term services and supports, based on
consumer-specific outcomes in 12 areas. It uses semi-structured interviews
to identify specific outcomes of importance to consumers; determine the
current status of these outcomes; identify supports and services necessary
to support achievement of the desired outcomes; and assess the adequacy
and acceptability of the necessary supports/services to the consumer. This
detailed, consumer-specific information is used in care planning and to
report quality indicators at the systems level.
Inter-rater reliability of this approach was tested during late 2007 and
early 2008. Project development staff observed interviews of long-term
care consumers (‘‘frail elders,’’ adults with physical disabilities, and adults
with developmental disabilities) conducted by skilled quality reviewers
and care managers trained in the PEONIES approach. Training was
conducted in a six-hour session, after which each interviewer conducted 1
or 2 interviews. A second, 8-hour training was then conducted to reinforce
training in areas where there appeared to be confusion.
Interviewers and observers recorded information independently. Inter-
rater reliability was assessed overall as percent agreement. Intraclass
correlations were calculated to assess reliability separately for the 12
outcome areas, by type of interviewer, and by type of consumer. Detailed
qualitative analysis also was done, to identify specific challenges to
reliability.
This session will present findings from the reliability test, with particular
emphasis given to the qualitative results and the implications for
development and implementation of this type of approach to assessing
quality.
Integrating person-centered, outcome-driven long-term care
planning and quality assurance: The PEONIES approach
Sarita L. Karon, PhD, Center for Health Systems Research and Analysis,
University of Wisconsin - Madison, Madison, WI