Measuring preparedness for mammography in women with intellectual disabilities: a validation study of the Mammography Preparedness Measure.

BACKGROUND: Women with intellectual disabilities have similar breast cancer rates as the general population, but lower rates of regular mammography and higher breast cancer mortality rates. Although prior qualitative work demonstrates that women with intellectual disabilities face unique, disability-specific barriers to mammography, the present authors lack standardized, validated instruments for measuring knowledge of breast cancer screening in this population. In addition, much research related to adults with intellectual disabilities focuses on family or carer perspectives, rather than involving women with intellectual disabilities, themselves. METHODS: The present authors first pilot tested a general population instrument measuring breast cancer knowledge, and found that it did not perform adequately in women with intellectual disabilities. In response, the present authors developed the Mammography Preparedness Measure (MPM), a direct short interview tool to measure knowledge and preparedness in women with intellectual disabilities, themselves, rather than relying on caregiver or other reports, and using inclusive methodology. The present authors validated the MPM by assessing test-retest reliability. RESULTS: Average test-retest per cent agreement of 84%, ranging from 74 to 91% agreement per item, with an overall kappa of 0.59. CONCLUSION: The MPM appears to be a valid instrument appropriate for measuring mammography preparedness in women with intellectual disabilities. The success of this innovative tool suggests that direct, rather than informant-directed tools can be developed to measure health knowledge and cancer screening readiness in adults with intellectual disabilities, an important measure in studying and reducing disparities.

Testing the feasibility of a DVD-based intervention to promote preparedness for mammography in women with intellectual disabilities.

Women with intellectual disabilities (ID, formerly mental retardation) have a similar breast cancer incidence as the general population, but they have higher breast cancer mortality and lower rates of regular screening mammography. We conducted a feasibility study evaluating acceptability, demand, and limited efficacy of a health education DVD about mammography for women with ID. The DVD was developed in order to address disability-specific barriers to mammography identified in prior studies, such as anxiety related to navigating the logistics of obtaining a mammogram. The DVD was found to be acceptable and feasible, and led to a moderate increase in mammography preparedness in this population. Study results suggest that this DVD-based intervention is an appropriate candidate for further study measuring efficacy and effectiveness in increasing regular mammography in women with ID, a disparity population.

Balancing act: approaches to healthy eating and physical activity among Boston public housing residents.

Boston public housing residents are more likely to report fair or poor health status, been diagnosed with obesity, and to be physically inactive compared with other Boston residents (Digenis-Bury, Brooks, Chen, Ostrem, & Horsburgh, 2008 ). Little is known about perceptions of and opportunities for healthy eating and physical activity in this population. We conducted eight focus groups at public housing developments to explore residents' views regarding opportunities and barriers to healthy eating and physical activity. Sixty-seven English- and Spanish-speaking residents participated. Transcripts were analyzed using qualitative content analysis. All residents described the challenge of balancing considerations of food quality, access, and affordability. Other findings included underutilized nutritional resources; abundant availability of unhealthy food; and economic and structural barriers to exercise. Transportation-related challenges were a dominant theme. Building opportunities for physical activity and providing access to affordable and quality food choices may be important interventions for promoting health among public housing residents.

More than just a mammogram: breast cancer screening perspectives of relatives of women with intellectual disability.

Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

Measuring staff empowerment regarding health care for clients with intellectual disabilities.

Background. Women with intellectual disabilities (ID) contract breast cancer at the same rate as the general population but have higher breast cancer mortality and lower rates of breast cancer screening. Many women with ID live in group homes or supported residences where they are cared for by direct support workers. While direct support workers are thought to influence client health, this effect is underresearched, and we lack tools for measuring staff empowerment and perceptions regarding client health. Methods. We developed and validated an instrument, the staff empowerment tool (SET), to measure staff empowerment as related to supporting clients in preventive health. Results. The SET was found to be a reliable instrument for measuring staff activation and empowerment in helping clients access mammography screening. Discussion. Quantifying staff empowerment and perspectives is important in studying and reducing disparities among adults with ID, a vulnerable population. Further research to determine the impact of staff empowerment levels on their clients' health and health care access is suggested. The SET is a valuable tool for measuring the construct of staff empowerment, evaluating interventions, and collecting data regarding variation in staff empowerment.

Evaluating representativeness and cancer screening outcomes in a state department of developmental services database.

Though it is widely recognized that people with intellectual and developmental disabilities (IDD) face significant health disparities, the comprehensive data sets needed for population-level health surveillance of people with IDD are lacking. This paucity of data makes it difficult to track and accurately describe health differences, improvements, and changes in access. Many states maintain administrative health databases that, to date, have not been widely used for research purposes. In order to evaluate the feasibility of using administrative databases for research purposes, the authors attempted to validate Massachusetts' administrative health database by comparing it to a large safety net hospital system's patient data regarding cancer screening, and to the state's service enrollment tables. The authors found variable representativeness overall; the sub-population of adults who live in 24-hr supported residences were better represented than adults who live independently or with family members. They also found a fairly low false negative rate for cancer screening data as compared with the "gold standard" of hospital records. Despite some limitations, these results suggest that state-level administrative databases may represent an exciting new avenue for health research. These results should lend context to efforts to study cancer and health screening variables using administrative databases. The present study methods may also have utility to researchers in other states for critically evaluating other state IDD service databases. This type of evaluation can assist researchers in contextualizing their data, and in tailoring their research questions to the abilities and limitations of this kind of database.

Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective.

Adults with intellectual disabilities (ID) face multiple health disparities and challenges to accessing health care. Little is known about sexual health care of this population and about how to optimize women's reproductive health care for women with intellectual disabilities. Women with ID face important barriers to care, including lack of provider training and experience, hesitancy to broach the topic of sexual health, a lack of sexual knowledge and limited opportunities for sex education, disability-related barriers, higher prevalence of sexual abuse and assault, often underreported, lack of dialogue around this population's human right to consensual sexual expression, undertreatment of menstrual disorders, and legal and systemic barriers. We conducted a limited literature review related to six aspects of sexual health care of women with ID, including barriers to sexual health care, sex education, sexual abuse and consensual sexuality, contraception, screening for sexually transmitted infections and cervical cancer, and pregnancy and parenting. After providing background information about each topic, we suggest practice recommendations for primary care clinicians, using a rights-based framework.