Back to Annual Meeting

Back to Annual Meeting

APHA Scientific Session and Event Listing

Pamela Block, PhD¹, Maria C. Milazzo, RN MS², William MacAllister, PhD², Kimberly Koch, MPA³, and Lauren Krupp, MD². (1) Occupational Therapy Program, Stony Brook University, School of Health Technology & Management, HSC L-2, Stony Brook, NY 11733, 631-444-3197, pamela.block@stonybrook.edu, (2) National Pediatric MS Center, Dept of Neurology, SUNY Stony Brook, HSC-12, Stony Brook, NY 11794-8121, (3) Knowledge and Family Programs, Client Programs Department, National Multiple Sclerosis Society, 700 Broadway, Suite 810, Denver, CO 80203

Children with pediatric MS represent an under-recognized and underserved population that falls between the cracks of the health care system. Pediatricians may not recognize or know how to treat the MS, and MS specialists may not have experience working with children. Because the diagnosis is uncommon, children rarely have the opportunity to meet others with the condition. Even if other diagnosed children live nearby, until recently, no mechanism existed for the children to learn about each other. Thus the children and their families tended to live in isolation and fear of what the diagnosis might mean for the future. The goal of our program is to develop and evaluate a community-based intervention to improve self-efficacy, promote health and quality of life, and to give the children a chance to meet peers with the same diagnosis. We have developed and implemented a successful community-based summer retreat program, forging partnerships between researchers, clinicians, community organizations, children with MS and their families. Though these partners come from varied backgrounds and perspectives, we all share the belief that community is a basic human right which has, until recently, been denied to these children. As first generation to be diagnosed and treated during childhood, community-formation is particularly vital, as it is these children who will be future peer-mentors, setting the activist agenda in the decades to come. The presenter will use cultural anthropology and disability studies frameworks to analyze the process by which these groups learned to work together.

Learning Objectives:

• 1)Identify strategies for building successful partnerships with clinicians, researchers, community organizations, and community members;
• 2)Recognize the characteristics of pediatric multiple sclerosis;
• 3)Assess strategies to improve self-efficacy and quality of life for this population, and;
• 4)Evaluate the success of a community-building intervention program.

Keywords: Children and Adolescents, Disability Studies

Presenting author's disclosure statement:

Any relevant financial relationships? No