- Email: [email protected]
quality improvement
Abstracts / 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
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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 longterm 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 WisconsinMadison, 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. Interrater 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
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
e11
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 longterm 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 WisconsinMadison, 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. Interrater 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