Health Care Self-Advocacy Strategies for Negotiating Health Care Environments: Analysis of Recommendations by Satisfied Consumers with SCI and SCI Practitioners.

doi: 10.1310/sci2201-13 Individuals with spinal cord injury (SCI) often experience complex health problems that, if untreated, can be costly and debilitating. In turn, they are high users of primary care. One study found that, during primary care visits, approximately 80% of the problems mentioned by patients with SCI were related to secondary conditions, such as urinary tract infections, pain, and skin problems. In a study of SCI patients in the Netherlands, over half (52%) of the contact with a primary care doctor was related to secondary conditions, with 34% considered to be preventable. Despite the necessity for quality health care, individuals with SCI face structural and environmental barriers, such as problems with transportation and inaccessible provider offices and equipment; studies have consistently found that these barriers hinder patients with disabilities from receiving needed care, including preventive screenings. Process barriers, such as physician’s lack of SCI knowledge, are also an ongoing problem. One study reported that emergency department (ED) residents displayed appropriate knowledge of 6 serious complications for SCI patients in the ED only 47% of the time. Other studies reported that SCI patients have difficulty finding knowledgeable doctors and feel the need to educate them about their disability. While potentially dangerous, limited provider knowledge can also pose a substantial hurdle for SCI patients in accessing primary health care. Lack of funding and service fragmentation are also cited as major process barriers. In navigating the numerous barriers within the health care system, individuals with SCI often struggle to get their health care needs met. When surveyed, 33% of patients with SCI expressed an unmet primary care need, with greater unmet needs related to lower income and poorer health status. A study of ED use by individuals with traumatic SCI classified half of ED visits as potentially preventable or of low urgency. Every consumer must navigate a complex interplay of socioeconomic, environmental, and physical factors unique to their situation as they try to access quality primary care. While many studies have documented barriers to care and health disparities, as well as recommended systems-level changes, few have focused on the navigation strategies utilized by consumers to effectively get their needs met. A fuller understanding of consumer-level strategies could facilitate the development of effective interventions – which