Online Program

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

Sunday, November 3, 2013

Bethlyn Houlihan, MSW, MPH, Boston University School of Public Health, New England Regional Spinal Cord Injury Center, Health & Disability Research Institute, Boston, MA
Andrea Plant, MPH, The Life Care Center of America, Plymouth, MA
Sarah Everhart Skeels, MPH, Boston University School of Public Health, New England Regional Spinal Cord Injury Center, Health & Disability Research Institute, Tiverton, RI
Alan Jette, PT, PhD, Health and Disability Research Institute, Boston University School of Public Health, Boston, MA
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.

Learning Areas:

Advocacy for health and health education
Chronic disease management and prevention
Other professions or practice related to public health
Planning of health education strategies, interventions, and programs
Public health or related research
Social and behavioral sciences

Learning Objectives:
Describe the main recommendations of consumers for finding and communicating with a primary care doctor, and for navigating the system to get equipment needs met. Explain effective self-advocacy skills from the consumer's perspective, including the importance of social support. Compare the consumer perspective with professionals' advice on how best to self-advocate within the health care delivery system.

Keyword(s): Access to Health Care, Disability

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I've been involved with the New England Regional SCI Center since 2000, as Assistant and then Associate Director over the last 5 years. I was Research Director for a CDC-funded project developing an intervention to address secondary conditions for consumers with SCI, including appropriate health care utilization and related qualitative interviews. I have conducted/analyzed a variety of quantitative and qualitative surveys to solicit consumer and provider perspectives for health care access among other research topics.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.