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Background Although many women with physical disabilities report poor quality reproductive health care, little research has addressed labor, delivery, and anesthesia experiences of these women. This study was conducted to explore these experiences in women with significant mobility disabilities. Methods A qualitative descriptive study was conducted with 22 women from the United States who had delivered newborns within the prior 10 years. All had significant mobility disabilities. Two-hour, in-depth telephone interviews were conducted using a semistructured, open-ended interview protocol, which addressed many topics, including labor, delivery, and anesthesia experiences. We recruited most participants through social networks, interviewing women from 17 states. Conventional content analysis, facilitated by NVivo software, was used to identify major themes. Results The mean age of women was 34.8 ± 5.3 years. Most women were white, college educated, and used wheeled mobility aids. Four key themes emerged from participants’ narratives of laboring and giving birth with a disability. These included women's preferences for type of delivery, clinicians and some women expected no labor pain, fears prompting active advocacy, and positive experiences. As participants discussed their experiences with anesthesia, four additional themes were identified: importance of consultation with the anesthesia team, decisions about epidural/spinal vs general anesthesia, failed epidural with repeated efforts, and fear of injury related to anesthesia. Conclusions The responses of women in this study suggest that there is need to make intrapartum care better for women with physical disabilities and to improve their experiences with labor, birth, and obstetric anesthesia care.

Given that over 24% of women in the United States have a disability and approximately 6% of Americans use mobility aids [1], a significant number of breast cancer survivors will likely have mobility impairments [2]. Physical disability can affect body image, and women with physical disabilities hold more negative body image perceptions than other women [3]. Body image concerns are also common among breast cancer survivors [4]. Breast cancer treatment can result in decreases in body satisfaction, potential breast disfigurement, and bodily changes [5]. Research has not examined body image among women with preceding disability and breast cancer; we thus sought to explore body image perceptions among women with chronic, pre-existing physical disability who developed early-stage breast cancer.

Increasing numbers of Americans are living with multiple chronic conditions (MCCs) and disabilities. Addressing health care needs of persons with MCCs or disabilities presents challenges on many levels. For health services researchers, priorities include (1) considering MCCs and disabilities in comparative effectiveness research (CER) and assessing quality of care; and (2) identifying and evaluating the data needed to conduct CER, performance measure development, and other research to inform health policy and public health decisions concerning persons with MCCs or disabilities. Little information is available to guide CER or treatment choices for persons with MCCs or disabilities, however, because they are typically excluded from clinical trials that produce the scientific evidence base. Furthermore, most research funding flows through public and private agencies oriented around single organ systems or diseases. Likely changes in the data landscape—notably wider dissemination of electronic health records (EHRs) and moving toward updated coding nomenclatures—may increase the information available to monitor health care service delivery and quality for persons with MCCs and disabilities. Generating this information will require new methods to extract and code information about MCCs and functional status from EHRs, especially narrative texts, and incorporating coding nomenclatures that capture critical dimensions of functional status and disability.

Objective To explore how underlying disability affects treatments and outcomes of disabled women with breast cancer.

Many studies have reported large variations in age- and sex-adjusted rates of hospitalizations across small geographic areas. These variations have often been attributed to differences in medical practice style which are not reflected in differences in health care outcomes. There is, however, another potentially important source of variation that has not been examined much in the literature: geographic differences in the age–sex adjusted size of the pool of patients who present with the disease and are candidates for hospitalization. Previous studies of small area variations in hospitalization rates have only used data on hospitalizations. Thus, it has not been possible to distinguish the extent to which differences in hospitalization rates are due to (i) differences in the chance that patients diagnosed with a disease are admitted to a hospital, which we refer to as the ‘practice style effect,’ versus (ii) geographic differences in the total amount of diagnosed disease, which we refer to as the ‘disease effect.’ Elementary methods for estimating the relative strength of the two effects directly from the data can be misleading, since equal amounts of variability in each effect result in unequal impacts on hospitalization rates. In this paper we describe a model-based approach for estimating the relative importance of the practice style effect and the disease effect in explaining variations in hospitalization rates. The key to our approach is the use of data on both inpatient and outpatient visits. We use 1997 Medicare data for two respiratory medical conditions across 71 small areas in Massachusetts: chronic bronchitis and emphysema, and bacterial pneumonia. Based on a Poisson model for the process generating hospitalizations and outpatient visits, we use a Bayesian framework and Gibbs sampling to compute and compare the correlation between the number of people hospitalized and each of these two sources of variation. Our results show that for the two conditions, disease rate variation explains at least as much of the variation in hospitalization rates as does practice style variation. Copyright © 2003 John Wiley & Sons, Ltd.

Administrative data result from administering health plans--tracking service utilization, paying claims, monitoring costs and quality--and have been used extensively for health services research. This article examines the strengths and limitations of administrative data for health services research studies of people with disabilities. Administrative data offer important advantages: encompassing large populations over time, ready availability, low cost, and computer readability. Questions arise about how to identify people with disabilities, capture disability-related services, and determine meaningful health care outcomes. Potentially useful administrative data elements include eligibility for Medicare or Medicaid through Social Security disability determinations, diagnosis and procedure codes, pharmacy claims, and durable medical equipment claims. Linking administrative data to survey or other data sources enhances the utility of administrative data for disability studies.

Planning for hospital discharge is an important component of nursing. Results are presented of a study to determine how well primary nurses predict the functional ability of their patients following discharge and to assess whether patients and nurses agree about their patients' understanding of the post-discharge treatment plan. Comparing nurses' predictions with patients' reports of functional status 2 months following discharge, we found that nurses consistently underestimate the functional ability of their patients. Comparing nurses' perceptions of their patients' understanding of their post-discharge treatment plan with patients' reports about their understanding, significant differences were found between nurses' perceptions and patients' reports. Nurses' perceptions were that patients were much more knowledgeable than their patients reported. These preliminary data suggest that hospital discharge planning is an area for further investigation and intervention. Nurses should explore new paradigms for patient education as lengths of hospital stay decrease and care shifts from acute care to community care.

Rural residents often confront significant barriers when seeking health care, including limited numbers of primary care and specialist physicians nearby, the absence of sophisticated inpatient and diagnostic services, lack of public transportation, and inadequate or absent health insurance coverage, compounded by widespread poverty, low rates of employment-related health insurance, and fragile socioeconomic infrastructures (Ricketts 1999, 2005; Auchincloss and Hadden 2002; Gamm et al. 2002; Hart et al. 2002; Moscovice and Stensland 2002; Slifkin 2002; Arcury, Gesler et al. 2005; Goins et al. 2005; Larson and Hill 2005). Given the nature of these well-documented impediments, certain subpopulations or rural residents, such as elderly individuals (Goins et al. 2005) and ethnic minorities (Glover et al. 2004; Probst et al. 2004), may face considerable hurdles when seeking health care services. We wondered about the experiences of a subpopulation that might be especially disadvantaged by physical, economic, and health care delivery system barriers: working-age, community dwelling rural residents with disabilities. In general, persons with disabilities report lower satisfaction with their health care than do others (Rosenbach 1995; Rosenbach, Acamache, and Khandker 1995; Iezzoni, Davis et al. 2002, 2003, 2004; Jha et al. 2002). Many reasons might explain such findings, including the greater need for complex health services, inadequate communication with clinicians, problematic attitudes of health care professionals and office staff toward disabling conditions, written health information in inaccessible formats, physically inaccessible care settings, and difficulties obtaining reliable transportation to health care facilities. In addition, compared with nondisabled populations, persons with disabilities on average face considerable socioeconomic disadvantages, such as higher rates of poverty and unemployment, lower educational attainment, and comparable to slightly higher rates of missing or inadequate health insurance (Hanson et al. 2003; Harris Interactive 2004; Kaiser Family Foundation 2004; Iezzoni and O'Day 2006). These problems compromise the health care experiences of persons with disabilities even in communities with extensive resources (Reis et al. 2004; Iezzoni and O'Day 2006). Sparse health care options in some rural communities could exacerbate such difficulties. A limited literature suggests that rural residents with disabilities do have more problems with their health care than do nondisabled individuals (Lishner et al. 1996). However, relatively little in-depth information exists about how working-age, community dwelling rural residents with disabilities perceive their health care experiences. “Understanding the perspective of the individual … is a key component to forming a complete picture of rural health care access” (Goins et al. 2005, p. 207). Learning these individual perceptions is critical to crafting patient-centered solutions—reforms that consider persons' values, preferences, and expectations (Institute of Medicine 2001; Berwick 2002). To begin exploring this issue, we conducted four focus groups in 2000–2001 with working-age adults with diverse disabilities living in two rural areas.