Morgan K Crossman1,2, Olivia J Lindly3, James Chan4, Megan Eaves5,2, Karen A Kuhlthau5,2, Robert A Parker2,4, Daniel L Coury6, Debra H Zand7, Lisa A Nowinski5,2,8, Kathryn Smith9,10, Megan Tomkinson11, Donna S Murray12,13,14. 1. Department of Pediatrics and mcrossman@buildingbrightfutures.org. 2. Department of Pediatrics, Harvard Medical School, Harvard University, Boston, Massachusetts. 3. Department of Health Sciences, Northern Arizona University, Flagstaff, Arizona. 4. Biostatistics Center, Massachusetts General Hospital, Boston, Massachusetts. 5. Department of Pediatrics and. 6. Department of Pediatrics, Nationwide Children's Hospital and School of Medicine, Ohio State University, Columbus, Ohio. 7. Department of Pediatrics, School of Medicine, Saint Louis University, St Louis, Missouri. 8. Lurie Center for Autism, MassGeneral Hospital for Children, Lexington, Massachusetts. 9. Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles, California. 10. Children's Hospital Los Angeles, Los Angeles, California. 11. Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. 12. Autism Speaks, Boston, Massachusetts. 13. Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio; and. 14. Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Abstract
BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.
BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.
Authors: Carolyn DiGuiseppi; Steven A Rosenberg; Margaret A Tomcho; Kathryn Colborn; Kristina Hightshoe; Silvia Gutiérrez-Raghunath; Jeanette M Cordova; Jodi K Dooling-Litfin; Cordelia Robinson Rosenberg Journal: Autism Date: 2020-11-27