Certainty of Decisions: A Process-Based Model for Decision Making for Children With Severe Neurological Impairment

Cohen E Kuo DZ Agrawal R et al . Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529-538. doi:10.1542/peds.2010-0910

Cohen E Berry JG Camacho X Anderson G Wodchis W Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics. 2012;130:e1463-e1470. doi:10.1542/peds.2012-0175

Berry JG Hall M Hall DE et al . Inpatient growth and resource use in 28 children’s hospitals: a longitudinal, multi-institutional study. JAMA Pediatr. 2013;167:170-177. doi:10.1001/jamapediatrics.2013.432

Berry JG Agrawal R Cohen E Kuo DZ . The Landscape of Medical Care for Children with Medical Complexity. Lenexa, KS: Children’s Hospital Association; 2013:1-16.

Kuo DZ Cohen E Agrawal R Berry JG Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165:1020-1026. doi:10.1001/archpediatrics.2011.172

Berry JG Bloom S Foley S Palfrey JS. Health inequity in children and youth with chronic health conditions. Pediatrics. 2010;126(suppl 3):S111-S119. doi:10.1542/peds.2010-1466D

Berry JG Hall DE Kuo DZ et al . Hospital utilization and characteristics of patients experiencing recurrent readmissions within children’s hospitals. JAMA. 2011;305:682-690. doi:10.1001/jama.2011.122

Mullin J Ullrich C. Caring for children who have severe neurological impairment. J Palliat Med. 2015;18:991. doi:10.1089/jpm.2015.0329

Hauer JM. Caring for Children Who Have Severe Neurological Impairment. Baltimore, MD: Johns Hopkins University Press; 2013.

Hauer J. Identifying and managing sources of pain and distress in children with neurological impairment. Pediatr Ann. 2010;39:198-205. doi:10.3928/00904481-20100318-04

Hauer J Houtrow AJ ; Section on Hospice and Palliative Medicine, Council on Children with Disabilities. Pain assessment and treatment in children with significant impairment of the central nervous system. Pediatrics. 2017;139:e20171002. doi:10.1542/peds.2017-1002

Hinds PS Kelly KP. Helping parents make and survive end of life decisions for their seriously ill child. Nurs Clin North Am. 2010;45:465-474.

Davies B Sehring SA Partridge JC et al . Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008;121:282-288. doi:10.1542/peds.2006-3153

Hill D Miller V Walter JK et al . Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliat Care. 2014;13:9. doi:10.1186/1472-684X-13-9

Hanratty B Hibbert D Mair F et al . Doctors’ understanding of palliative care. Palliat Med. 2006;20:493-497. doi:10.1191/0269216306pm1162oa

Bogetz JF Bogetz AL Gabhart JM Bergman DA Blankenburg RL Rassbach CE. Continuing education needs of pediatricians across diverse specialties caring for children with medical complexity. Clin Pediatr (Phila). 2015;54:222-227. doi:10.1177/0009922814564049

Sanderson A Hall A Wolfe J. Advance care discussions: pediatric clinician preparedness and practices. J Pain Symptom Manage. 2016;51:520-528. doi:10.1016/j.jpainsymman.2015.10.014

Robertson CM Watt MJ Yasui Y. Changes in the prevalence of cerebral palsy for children born very prematurely within a population-based program over 30 years. JAMA. 2007;297:2733-2740.

Berry JG Graham DA Graham RJ et al . Predictors of clinical outcomes and hospital resource use of children after tracheotomy. Pediatrics. 2009;124:562-572. doi:10.1542/peds.2008-3491