Successful health care self-advocacy strategies for consumers with spinal cord injury: Qualitative interviews with consumers and profressionals

Objectives: To explore consumer perspectives on effective self-advocacy in the health care setting for individuals with spinal cord injury (SCI), compared to rehabilitation professionals. Methods: Semi-structured interviews - in-person (consumers); phone (professionals) Participants: Seven SCI consumers (5 men, 2 women); 4 professionals Results: Domain analysis revealed several domains and sub-domains: 1) primary care provider (PCP), with sub-domains of finding a PCP, qualities to look for in a doctor, and communication; 2) Equipment, with sub-domains of issues with obtaining equipment and insurance issues; 3) Self-Advocacy Skill Development, with sub-domains of general skills and health care navigation. Discussion: Consumers felt it most important that a provider be easy to contact, and able to facilitate appointments/referrals quickly when needed. Of note, PCP expertise was of less importance, except to those with higher-level injuries. Obtaining custom equipment is time-consuming, with long wait periods, and requires active consumer participation. Consumers agreed that a professional medical advocate for insurance issues is essential. General self-advocacy skills included: becoming knowledgeable about your injury and healthcare needs, speaking up and being persistent, practicing communication skills, being organized, keeping a positive attitude, and joining support groups. Healthcare navigation recommendations included: being your own expert, being confident in your healthcare team, changing providers if not comfortable, researching and utilizing available services, and never giving up. Consumers and professionals mentioned recognizing personal limits and getting support for self-advocacy as well. Conclusions: Consumers recommend the most effective self advocacy skills they have experienced in the health care setting, as echoed by rehabilitation professionals.