More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

The purpose of this study was to identify various barriers and facilitators associated with participation in fitness and recreation programs/facilities among persons with disabilities. Focus groups were conducted in ten regions across the United States in 2001 to 2002 with four types of participants: (1) consumers with disabilities, (2) architects, (3) fitness and recreation professionals, and (4) city planners and park district managers. Sessions were tape-recorded and content analyzed; focus group facilitators took notes of identified barriers and facilitators to access. Content analysis of tape recordings revealed 178 barriers and 130 facilitators. The following themes were identified: (1) barriers and facilitators related to the built and natural environment; (2) economic issues; (3) emotional and psychological barriers; (4) equipment barriers; (5) barriers related to the use and interpretation of guidelines, codes, regulations, and laws; (6) information-related barriers; (7) professional knowledge, education, and training issues; (8) perceptions and attitudes of persons who are not disabled, including professionals; (9) policies and procedures both at the facility and community level; and (10) availability of resources. The degree of participation in physical activity among people with disabilities is affected by a multifactorial set of barriers and facilitators that are unique to this population. Future research should utilize this information to develop intervention strategies that have a greater likelihood of success.

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID. (c) 2006 Wiley-Liss, Inc.