Secondary conditions in spinal cord injury: results from a prospective survey.

STUDY DESIGN: Prospective, self-report mail survey with two points of measurement one year apart. OBJECTIVES: To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years. SETTING: Non-institutionalized adults with SCI living in the United States of America. METHODS: Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2. RESULTS: Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI. CONCLUSIONS: Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.

Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: a qualitative inquiry.

Individuals with physical disabilities are less likely to utilise primary preventive healthcare services than the general population. At the same time they are at greater risk for secondary conditions and as likely as the general population to engage in health risk behaviours. This qualitative exploratory study had two principal objectives: (1) to investigate access barriers to obtaining preventive healthcare services for adults with physical disabilities and (2) to identify strategies to increase access to these services. We conducted five focus group interviews with adults (median age: 46) with various physically disabling conditions. Most participants were male Caucasians residing in Virginia, USA. Study participants reported a variety of barriers that prevented them from receiving the primary preventive services commonly recommended by the US Preventive Services Task Force. We used a health services framework to distinguish structural-environmental (to include inaccessible facilities and examination equipment) or process barriers (to include a lack of disability-related provider knowledge, respect, and skilled assistance during office visits). Participants suggested a range of strategies to address these barriers including disability-specific continuing education for providers, the development of accessible prevention-focused information portals for people with physical disabilities, and consumer self-education, and assertiveness in requesting recommended services. Study findings point to the need for a more responsive healthcare system to effectively meet the primary prevention needs of people with physical disabilities. The authors propose the development of a consumer- and provider-focused resource and information kit that reflects the strategies that were suggested by study participants.

Using mixed methods in disability and rehabilitation research.

This paper will discuss the theoretical design considerations and the practical integration of quantitative and qualitative methods in disability and rehabilitation research, which have gained recent popularity among researchers of various disciplines. Whereas quantitative experimental and survey approaches allow researchers to draw generalizable conclusions that apply to a particular population as a whole, qualitative methods capture the depth of respondents' experiences in their own words. Qualitative methods may be used to explore new topical areas prior to implementing a population-based survey, or they may follow quantitative approaches to explain findings in greater detail. We will discuss research findings from two recent studies of rehabilitation industry professionals and people with physical disabilities to exemplify the utility of mixed-method designs in disability and rehabilitation research. The article will conclude with recommendations for rehabilitation nursing researchers to apply both qualitative and quantitative methods in their research practice.

Use of outcomes information in acute inpatient rehabilitation.

OBJECTIVE: To describe the ways in which rehabilitation outcomes information is used in the acute inpatient rehabilitation industry and the industry's views on the topic of public disclosure of rehabilitation outcomes information. DESIGN: A mixed-methods approach, featuring data from 39 informational telephone interviews with rehabilitation industry stakeholders followed by a survey of 95 randomly sampled acute inpatient rehabilitation provider organizations. RESULTS: Both the informational interviews and survey findings revealed that there is currently little stakeholder demand for functional outcomes information. Outcomes information is primarily used within provider organizations to track the effectiveness of rehabilitation services. There is general consensus among rehabilitation provider organizations in favor of public disclosure of outcomes information. CONCLUSIONS: Outcomes information is not routinely shared with rehabilitation stakeholders (i.e., payers and consumers). Rehabilitation providers and industry stakeholders generally express favorable attitudes toward public disclosure of outcomes information. Stakeholders' perceptions of current barriers and facilitators of outcomes information provide insight into the steps that can be taken toward greater transparency in the rehabilitation industry.

Use of primary prevention services among male adults with cerebral palsy, multiple sclerosis, or spinal cord injury in managed care and fee-for-service.

Future research needs to clarify the biases in clinical practice and potential barriers that may exist at both the provider and health plan levels that exclude men with physical disabilities from routine preventive services. As the population of people with disabilities ages and lives longer, it is necessary that routine preventive services are accessible and made available to them, regardless of gender, disability, or health insurance type.

Access to health care services among people with chronic or disabling conditions: patterns and predictors.

OBJECTIVE: To examine patterns of access to a variety of specific health care services among people with chronic or disabling conditions, focusing on factors that predict access to services. DESIGN: National survey of 800 adults with cerebral palsy (CP), multiple sclerosis (MS), spinal cord injury (SCI), or arthritis. SETTING: Respondents were surveyed in the general community. PARTICIPANTS: National convenience sample of adults with CP, MS, SCI, or arthritis. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Access to services from primary care doctors, services from specialists, rehabilitative services, assistive equipment, and prescription medications. Cross tabulations and logistic regression analyses were performed on survey data to examine patterns and predictors of access to health care services. RESULTS: Only half of all respondents received needed rehabilitative services. Respondents covered by fee-for-service health plans were more likely than those covered by managed care organizations to receive needed services from specialists. Respondents with the poorest health and with the lowest incomes were the least likely to receive all health services examined. CONCLUSIONS: People with chronic or disabling conditions often require a comprehensive array of health care services. Reform of the current health care payment and delivery structures is needed so that health care is more responsive to those with the greatest service needs.

Experiences with care co-ordination among people with cerebral palsy, multiple sclerosis, or spinal cord injury.

PURPOSE: To describe the experiences with care co-ordination of people with cerebral palsy, multiple sclerosis, or spinal cord injury; to determine barriers to effective care co-ordination; and to compare experiences across disability and health plan types. METHOD: Qualitative, semi-structured telephone interviews with 30 people with cerebral palsy, multiple sclerosis, or spinal cord injury. Interviews focused on the care co-ordination experience of individuals in managed care and traditional indemnity health insurance plans in the USA and were analysed using NVivo. RESULTS: Half of the respondents reported that they had a health professional who co-ordinated their care. Participants identified barriers that prevented effective care co-ordination, including a lack of disability specific knowledge, providers' limited time and effort related to care, and insufficient communication among providers. There were few differences between managed care and fee-for-service respondents with regard to these barriers. CONCLUSIONS: Study findings reveal few differences in the care co-ordination experiences amongst people with cerebral palsy, multiple sclerosis, or spinal cord injury in both plan types. All providers need to become more literate about the health care needs of people with physical disabilities, and health plans need to reward communication among providers and the time and effort invested in care co-ordination.

The organization and financing of health services for persons with disabilities.

Americans with disabilities are rarely considered a distinct group of health care users in the same way as are older Americans, children, racial and ethnic minorities, and others who are perceived to have different needs and access issues. Indeed, to some extent individuals with disabilities overlap with all these groups. But they also have distinct needs with material implications for the organization, delivery, and financing of health care services. Despite the disproportionate health care needs and expenditures of many--though not all--individuals with disabilities, the mainstream health services research community has largely neglected them. This article outlines the most pressing health service research issues in addressing the health care needs of individuals with disabilities.