Unmet healthcare needs of persons with tetraplegia and their primary caregivers: Policy implications

Persons with tetraplegic (cervical) spinal cord injuries (SCI) have complex health care needs. They require access to a wide range of goods and services to maintain their health and prevent/minimize further functional losses. The severity of SCI impairment puts these individuals at great risk for incurring serious, costly medical complications over their lifetime. This 2-year, qualitative/quantitative study, funded by Blue Cross Blue Shield of Michigan, focuses on the healthcare experiences of the most needy and vulnerable segment of this population: public insurance recipients with tetraplegia and their primary caregivers. Qualitative data comes from in-depth, audiotaped interviews with 20 Medicaid/Medicare recipients with tetraplegic injuries and their primary caregivers. Participants also completed survey instruments measuring stress, health/functioning, and quality of life. Content analysis of coded interviews transcripts revealed many unmet needs. SCI consumers cited (a) inadequate supplies, such as catheters and dressings; (b) difficulty acquiring/repairing durable medical equipment, such as wheelchairs and lifts; (c) denial of requests for ramps and other environmental modifications, and (d) untrained, unreliable agency caregivers. SCI caregivers cited (a) unsatisfactory service by home care agencies; (b) no or insufficient financial compensation for SCI care provided by the family; (c) lack of respite care for caregiver; and (d) lack of affordable health insurance for family caregivers. Participants' recommendations for improving access to goods and services were based on an “insider” logic that stressed long-term savings in hospital/nursing home costs through prevention of SCI secondary complications and inclusion of health insurance coverage and respite services for the family caregiver.