A comparative analysis of Center for Independent Living staff and board of directors regarding CIL services and consumer participation.

Community living of people with disabilities spans independent living and community engagement. Consumer choice and control of their level of community participation requires community accessibility, resources and supports. Some people with disabilities have difficulties procuring and maintaining these resources. Centers for Independent Living (CIL) are advocacy and service agencies that have been empowering consumers to meet their needs for over 40 years. Despite this history, little is known about the value of CIL services for increasing community participation of people with disabilities. We administered the CIL Participation Service Survey to 420 CIL staff members and 107 CIL board members to examine their opinions about the relative value of different CIL services for increasing community participation of their consumers. Results indicated that both staff and board members have very high regard for the value and quality of CIL services. The Independent Living (IL) philosophy of consumer choice and control was among the most highly rated aspects of CIL service delivery for both staff and board members. Overall, staff and board member responses were very consistent in terms of the top-rated strengths and weaknesses of CIL services for increasing participation among consumers. Differences appeared to reflect the daily staff focus on specific consumer need versus board members' view of larger community issues.

Analyzing the effects of different signs to increase the availability of designated van-accessible parking spaces.

Often, designated van accessible parking spaces are occupied by non-ramp or lift equipped vehicles (NRLEV) with accessible parking permits. This causes inconvenience, safety concerns, and reduced availability of parking spaces for ramp or lift equipped vehicles (RLEV). The researchers conducted a single subject design study with two settings to examine a differential comparison between the standard van sign versus intervention signs (pictorial representation of a ramp-equipped van plus messages) to determine which is more effective to signal NRLEV users not to park in designated van accessible spaces. The study was composed of two phases, a multiple treatment design to compare the effects of the intervention signs during phase 1 and a reversal design to test and validate the most effective intervention effects during phase 2. The results based on observation showed that the interventions signs could moderately reduce the chances of NRLEV users parking in the designated van accessible parking space. Implications of these research findings are discussed and recommendations for changes in state and national accessible parking policies are suggested.

The effects of contingency contracts and performance feedback on completing data entries to self-monitor community participation of people with physical disabilities: An ecological momentary study.

This article examines the use of ecological momentary assessment (EMA) to analyze the effect of contingent contracts and performance feedback in completing data entries to self-monitor community participation of people with mobility-related disabilities. Two participants with mobility-related disabilities were assigned to self-monitor their community participation activities using a personal digital assistant (PDA), which had been preprogrammed to signal four times a day throughout the entire study. At each prompt, participants were asked to complete a brief survey on a PDA. Participants received the monetary rewards based on their PDA completion rate. All participants maintained more than 95% completion and received the full monetary reward available.

Participatory action research designs in applied disability and rehabilitation science: protecting against threats to social validity.

Researchers and disability advocates have been debating consumer involvement in disability and rehabilitation science since at least 1972. Despite the length of this debate, much confusion remains. Consumer involvement may represent a spirit of democracy or even empowerment, but as a tool of science, it is necessary to understand how to judge its application. To realize consumer involvement as a design element in science, researchers need a framework for understanding how it can contribute to the scientific process. The thesis of this article is that a primary scientific function of consumer involvement is to reduce threats to the social validity of research, the extent to which those expected to use or benefit from research products judge them as useful and actually use them. Social validity has traditionally not been treated with the same rigor as concerns for internal and external validity. This article presents a framework that describes 7 threats to social validity and explains how 15 forms of consumer involvement protect against those threats. We also suggest procedures for reporting and reviewing consumer involvement in proposals and manuscripts. This framework offers tools familiar to all scientists for identifying threats to the quality of research, and for judging the effectiveness of strategies for protecting against those threats. It may also enhance the standing of consumer involvement strategies as tools for protecting research quality by organizing them in a way that allows for systematic criticism of their effectiveness and subsequent improvement.

Secondary analysis of a scoping review of health promotion interventions for persons with disabilities: Do health promotion interventions for people with mobility impairments address secondary condition reduction and increased community participation?

BACKGROUND: Secondary conditions can have very serious outcomes for people with physical disabilities. Such consequences can range from immobility due to pressure sores to withdrawal and isolation due to depression, decreasing participation in the community. OBJECTIVE/HYPOTHESIS: To further investigate these assumptions, we conducted a review of the literature on health promotion interventions that include physical activity for adults with disabilities to determine whether they have a positive effect on the reduction of secondary conditions and increased community participation. METHODS: We conducted a secondary analysis of the results of a scoping review of health promotion programs containing physical activity for people with mobility impairments (N = 5). This secondary analysis examined the relationship between health promotion containing physical activity and prevention of secondary conditions among people with various physical disabilities. We further examined evidence and effects of independent variables on the outcome of increased community participation for study participants. RESULTS: The outcomes from this investigation are varied, with 2 studies providing evidence of reducing secondary conditions while another shared anecdotal statements referencing a decrease in secondary conditions. Of the remaining 2 studies in this paper, 1 showed no intervention effect on reducing secondary conditions while the remaining study reported an increase in secondary conditions. Regarding increased participation in the community, 2 of 5 studies directly reported on these outcomes, while increased community participation was referenced in another 2 articles, but without any data presented. The final study did not report on any post intervention in the community. CONCLUSIONS: This review demonstrates that research on health promotion interventions containing physical activity lack description about whether such interventions help reduce or prevent secondary conditions. Additionally, the review shows that further work is needed in terms of sustaining health programs effects beyond the initial proximal activity gains, with attention given toward more distal outcomes of increased participant participation in the community.

The psychosocial impact of Hurricane Katrina on persons with disabilities and independent living center staff living on the American Gulf Coast.

OBJECTIVES: To determine the impact of Hurricane Katrina on the psychosocial health of people with disabilities and on the ability of people with disabilities in the affected area to live independently. PARTICIPANTS: Transcribed conversations were analyzed for 56 survivors of Hurricane Katrina on the American Gulf Coast, all of whom were persons with disabilities or persons working with them. METHOD: Semi-structured interviews were conducted either individually or in focus groups with participants. Qualitative analysis was undertaken using hermeneutic techniques. RESULTS: Six major themes emerged: faith, incredulousness, blaming others or oneself, family adaptation and resiliency, and work and professional responsibility. CONCLUSIONS: The resiliency of persons with disabilities to adapt to disasters can be better understood through factors such as these, providing an effective barometer of social capital that can help societies prepare for future disasters among those most vulnerable.

Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities.

Health promotion programs for people with disabilities are in the early stages of development. This critical review utilizes a credentialed expert panel to develop a set of guidelines for community-based health promotion programs for individuals with disabilities. The procedures include a review of background material, systematic literature review with drafted guidelines consisting of operational, participation and accessibility recommendations. The role that those with disabilities can play is addressed and includes program planning, implementation and evaluation, physical and programmatic accessibility of programs, and importance of evidence-based practices.

Exploring the health of women with mobility impairments.

This study examined health surveys of 109 midwestern women (mean age 44.6 +/- 8.2 years) with impaired mobility to determine whether mobility impairment severity was related to self-reported health, health care use, and engaging in health behaviors. The study also assessed which health factors were associated with pain. Women with severe mobility impairments reported poorer physical functioning, but better mental health than less severely impaired women after controlling for age, disability duration, and/or bodily pain. Degree of mobility impairment level was not significantly related to health behaviors, except having a checkup in the past year; more moderately impaired women reported these visits than mildly impaired women. Furthermore, pain was significantly associated with social functioning, general health, and secondary conditions. The findings suggest that factors beyond impairment level, such as pain, age, and disability duration, are related to the health of mobility-impaired women.

Measuring health-related quality of life for persons with mobility impairments: an enabled version of the short-form 36 (SF-36E).

OBJECTIVE: Examine psychometric properties of the SF-36 and SF-36E for mobility-impaired individuals and assess whether the SF-36E yields higher health-related quality-of-life scores. METHODS: We altered the SF-36 Physical Function scale by substituting the word "go" for "walk" and "climb" and changed the stem to reflect function using assistive devices. We compared responses between versions for 201 individuals with disabilities (n = 95 wheelchair users, n = 48 other device users, 58 = no device users). RESULTS: Both surveys yielded reliable scores, but floor and ceiling effects occurred with both versions. Confirmatory factor analyses demonstrate good fit for the SF-36 and SF36E, but were compromised by low sample size. Respondents demonstrated significantly better Role Physical, Bodily Pain, and Vitality on the SF-36E, but worse General Health. CONCLUSIONS: The World Health Organization framework, the International Classification of Functioning, Disability, and Health (ICF) suggests that it is important to know both what one can do without assistance (capacity) and what one can do with assistance (performance). Results suggest that the SF-36E successfully measures performance among mobility-impaired individuals, including wheelchair users. However, further validation studies of the SF-36 and SF-36E are warranted with samples of individuals with disabilities.

Determining paralysis prevalence in the United States.

BACKGROUND: Estimates of paralysis vary widely, largely owing to a lack of standard definition and nontargeted survey approaches. Like other poorly understood conditions such as fibromyalgia, chronic fatigue, or chronic pain, paralysis falls outside the scope of clearly defined medical diagnosis, further complicating surveillance efforts. This inability to identify accurate prevalence makes developing policy interventions around the needs of many persons with these disabilities problematic. The objectives were to investigate how paralysis is being measured in the United States and to examine the validity of prevalence estimates based on current approaches. METHODS: We reviewed existing measurement instruments and surveyed 139 agencies and organizations to determine how they capture paralysis data. RESULTS: There is a widespread reliance on ICD coding or broad functional capabilities for most state or federal agencies. Many organizations serving consumers depend on state registries for discrete conditions in which paralysis is not directly measured. CONCLUSIONS: Improved paralysis prevalence data will benefit from a more functional definition consistent with ICF guidelines, which can be part of future surveillance efforts at state and federal levels.

Developing and systematically implementing participatory action research.

Participatory Action Research (PAR) is a collaborative approach to conducting research that recently emerged as a paradigm for bridging science and clinical practice. The key characteristic of this approach--collaboration between consumers and researchers--often increases the relevance of research while maintaining the standards of scientific rigor. Although PAR is receiving increased attention from researchers and consumers in social science and public health, it has not been implemented widely. Some of the reasons for a limited application of PAR in the field include lack of knowledge about PAR and strategies for its implementation. This article defines PAR, provides an overview of the characteristics of this approach, and discusses 4 elements for systematic incorporation of the PAR approach into the research process. The elements are (1) participant selection and recruitment, (2) role and relationship clarification for researchers and participants, (3) research team education, and (4) management and support.

Promoting physical activity among women with mobility impairments: a randomized controlled trial to assess a home- and community-based intervention.

OBJECTIVE: To assess the effectiveness of an intervention to promote physical activity and fitness in physically disabled women. DESIGN: Randomized controlled trial. SETTING: Home or community. PARTICIPANTS: Seventy-five adult women with mobility limitations. INTERVENTION: Incorporated behavioral techniques, social support, and education to promote exercise. MAIN OUTCOME MEASURES: Fitness measures included weight, body mass index, resting blood pressure and heart rate, time to complete a mobility course, and heart rate during and blood pressure after navigating the course. Also collected self-reported experience of secondary conditions and weekly self-reports of physical activity. RESULTS: We found no significant fitness differences between groups, except for peak heart rate. However, paired t tests of the physical activity data revealed the experimental group significantly increased its total weekly physical activity minutes (P=.04), and the increase in weekly cardiovascular activity approached significance (P=.06). CONCLUSIONS: The experimental group did not experience better fitness or fewer secondary conditions than the controls. However, the experimental group's physical activity data indicate that this group significantly increased its activity over 6 months. Thus, although this study did not detect health changes, it showed that mobility-impaired women can adopt and maintain a physical activity program.