title: A community engagement process for families with children with disabilities: lessons in leadership and policy.
abstract: This article examines a community engagement process developed as part of leadership training for clinical trainees in the Oregon Leadership Education for Neurodevelopmental and Related Disabilities (LEND) Program in a complex community with diverse families who have children with disabilities. The goal is to examine the process and lessons learned for clinical trainees and their mentors from such a process. This is a case study conducted as community-engaged action research by participant-observers involved in the Cornelius community for the past 4 years. The authors include faculty members and clinical trainees of the Oregon LEND Program at the Oregon Health & Science University, families with children with disabilities in the community, and city officials. It is a critical case study in that it studied a community engagement process in one of the poorest communities in the region, with an unusually high population of children with disabilities, and in a community that is over half Latino residents. Lessons learned here can be helpful in a variety of settings. Community engagement forum, community engagement processes, a debriefing using a seven-element feasibility framework, and trainee evaluations are key elements. A community engagement forum is a meeting to which community members and stakeholders from pertinent agencies are invited. Community engagement processes used include a steering committee made up of, and guided by community members which meets on a regular basis to prioritize and carry out responses to problems. Trainee evaluations are based on a set of questions to trigger open-ended responses. Lessons learned are based on assessments of initial and long-term outcomes of the community engagement processes in which families, community members, local officials and LEND trainees and faculty participate as well as by trainee participant-observations, end of year evaluations and trainee debriefings at the time of the initial community assessment forum. The thesis that emerges is that community engagement processes can afford significant opportunities for clinicians in training to develop their leadership skills toward improving maternal and child health for minority families with children with disabilities while building capacity in families for advocacy and facilitating change in the community.
authors.affiliation: Child Development Rehabilitation Center, Oregon Health & Science University, Portland, OR 97239, USA. vargascl@ohsu.edu
authors.forename: Claudia María
authors.initials: CM
authors.lastname: Vargas
authors.forename: Consuelo
authors.initials: C
authors.lastname: Arauza
authors.forename: Kim
authors.initials: K
authors.lastname: Folsom
authors.forename: María del Rosario
authors.initials: Mdel R
authors.lastname: Luna
authors.forename: Lucy
authors.initials: L
authors.lastname: Gutiérrez
authors.forename: Patricia Ohliger
authors.initials: PO
authors.lastname: Frerking
authors.forename: Kathleen
authors.initials: K
authors.lastname: Shelton
authors.forename: Carl
authors.initials: C
authors.lastname: Foreman
authors.forename: David
authors.initials: D
authors.lastname: Waffle
authors.forename: Richard
authors.initials: R
authors.lastname: Reynolds
authors.forename: Phillip J
authors.initials: PJ
authors.lastname: Cooper
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D003256:Community Participation; D055812:Community-Based Participatory Research; D019988:Children with Disabilities; D005190:Family; D006302:Health Services Research; D006801:Humans; D007857:Leadership; D008297:Male; D009922:Oregon; D010290:Parents / Q000193:education; D057766:Policy; D012944:Social Support
references.citation: Matern Child Health J. 2007 Mar;11(2):97-109
references.pmid: 17103327
references.citation: Matern Child Health J. 2007 Jul;11(4):373-83
references.pmid: 17295067
references.citation: Health Promot Pract. 2010 Jan;11(1):16-20
references.pmid: 20038649