Jamie G. Swaine

Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities.

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N  =  4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care.

Financial well-being of US parents caring for coresident children and adults with developmental disabilities: An age cohort analysis

Abstract Background Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents (N = 753) of children with developmental disabilities. Results Income and asset poverty was greatest for the youngest and oldest parents. Liquid assets were relatively flat across cohorts, while net worth declined sharply for elderly parents. Income was highest among parents aged 45–54. Conclusion These findings signal significant financial vulnerability among parents of children with developmental disabilities. Policy makers should consider targeted measures to improve the financial well-being of these parents, particularly the youngest and oldest.

Cervical and breast cancer-screening knowledge of women with developmental disabilities

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of womens knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed.

Cancer screening knowledge changes: Results from a randomized control trial of women with developmental disabilities

Background: Women with developmental disabilities are much less likely than nondisabled women to receive cervical and breast cancer screening according to clinical guidelines. One barrier to receipt of screenings is a lack of knowledge about preventive screenings. Method: To address this barrier, we used a randomized control trial (n = 175 women) to test Women Be Healthy, an intervention designed to promote cervical and breast cancer screening for women with developmental disabilities. Women assigned to the experimental group participated in weekly health education program for 8 weeks. Women assigned to the control group participated in their regular vocational training or educational activities. Results: Unadjusted findings indicated modest gains for both groups in knowledge related to cervical and breast cancer screening. Regression results indicated statistically significant but modest knowledge gains for the experimental group related to breast cancer screening. Implications: These findings indicate that the Women Be Healthy curriculum is promising but needs to better address cervical cancer.

Recruitment and consent of women with intellectual disabilities in a randomised control trial of a health promotion intervention.

BACKGROUND The need for evidence-based health promotion interventions for women with intellectual and developmental disabilities is critical. However, significant barriers impede them from participating in research, including those related to recruitment and obtaining informed consent. METHODS This study describes a procedure for the recruitment and consent of women with intellectual disabilities into a community-based, multi-site randomised controlled trial. RESULTS Of 269 women who participated in information sessions, 203 (75%) enrolled in the study. While women with and without legal guardians consented at the same approximate rates (83% and 85%, respectively), those with legal guardians enrolled at significantly lower rates (61%) because of lower rates (74%) of guardian consent. CONCLUSIONS It is possible to recruit community-dwelling women with intellectual disabilities into randomised controlled trials at relatively high participation rates. Recruiting women who have guardians poses additional challenges for researchers.

Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records.

Objective. We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. Methods. Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18–65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across womens sociodemographic and health-care provider characteristics. Results. Of women 18–65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008–2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. Conclusions. Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets.

Test of an intervention to improve knowledge of women with intellectual disabilities about cervical and breast cancer screening

BACKGROUND There is a critical need for evidence-based health education interventions for women with intellectual disabilities (IDs) to promote receipt of preventive health screenings. Previous research has established Women Be Healthy, an 8-week classroom-style intervention designed to teach women with IDs about breast and cervical cancer screenings, as a promising practice. However, additional research is needed to determine how to further improve screening-related knowledge gains. This study aimed to test a modified version of Women Be Healthy, Women Be Healthy 2, and compare its effectiveness in increasing knowledge gains to the original intervention. METHOD Women living in the community across one state in the United States were randomly assigned to a treatment (n = 98), delayed treatment, (n = 35), or no intervention group (n = 65). Women in the treatment group received Women Be Healthy, and women in the delayed treatment group received the modified Women Be Healthy 2. Baseline and post-intervention interviews were conducted to measure knowledge of cervical and breast cancer screening. Knowledge scores were compared across groups. RESULTS Among the nine knowledge items measured, one breast knowledge measure and one cervical knowledge measure showed statistically significant group differences; marginally significant differences were observed for two other knowledge measures. After adjusting for covariates, women who received Women Be Healthy 2 had increased knowledge overall compared with the women receiving no intervention. CONCLUSION Women Be Healthy 2 is promising, but additional efforts appear necessary to increase the knowledge women with IDs have about cervical and breast cancer screening.

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n  =  32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

Financial Well-being of Single, Working-age Mothers of Children with Developmental Disabilities

Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income, net worth, and liquid assets of U.S. single, working-age mothers (n  =  242) of children and adult children with developmental disabilities. The well-being of these mothers was compared to the situation of married mothers of children with developmental disabilities (n  =  345) and of single mothers who did not have children with developmental disabilities (n  =  6,547). Compared with both married mothers of children with developmental disabilities and single mothers without children with developmental disabilities, single mothers of children with developmental disabilities had markedly worse financial well-being across a range of income- and asset-based measures. Single mothers caring for children with developmental disabilities face adverse financial well-being as compared with other mothers. Policy makers should consider targeted measures to improve the financial well-being of these parents.

Accuracy of Self-Reported Cervical and Breast Cancer Screening by Women With Intellectual Disability

This study examines the accuracy of self-report of cervical and breast cancer screening by women with intellectual disability (n  =  155). Data from face-to-face interviews and medical records were analyzed. Total agreement, sensitivity, specificity, positive predictive value and negative predictive value were calculated. Total agreement between self-report and medical record on receipt of both procedures was 75% for Pap test and 87% for mammography. Self-reported Pap tests and mammography showed >90% sensitivity, but specificity was low for both procedures (41% for Pap test, 30% for mammogram), indicating overreporting of receipt of Pap tests and mammography similar to women without disabilities. Clinicians and researchers are cautioned to corroborate self-reported data with other sources for patients and research participants with intellectual disability.