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- Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study.PLoS Med. 2012; 9: e1001158-10https://doi.org/10.1371/journal.pmed.1001158
- Inpatient growth and resource use in 28 children's hospitals: a longitudinal, multi-institutional study.JAMA Pediatr. 2013; 167: 170-177https://doi.org/10.1001/jamapediatrics.2013.432
- Severe neurological impairment: a delphi consensus-based definition.Eur J Paediatr Neurol. 2020; 29: 81-86https://doi.org/10.1016/j.ejpn.2020.09.001
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- Caring for children who have severe neurological impairment.The Johns Hopkins University Press, Baltimore, MD2013
- Children with medical complexity: an emerging population for clinical and research initiatives.PEDIATRICS. 2011; 127: 529-538https://doi.org/10.1542/peds.2010-0910
- Safe work-hour standards for parents of children with medical complexity.JAMA Pediatr. 2020; 174: E1-2https://doi.org/10.1001/jamapediatrics.2019.4003
- Impact of pediatric critical illness and injury on families: a systematic literature review.PEDIATRICS. 2006; 118: S203-S218https://doi.org/10.1542/peds.2006-0951B
- Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.BMC Pediatr. 2015; 15: 197-215https://doi.org/10.1186/s12887-015-0514-5
- Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Int J Qual Health Care. 2007; 19: 349-357https://doi.org/10.1093/intqhc/mzm042
Dedoose Version 8.3.47b, web application for managing, analyzing, and presenting qualitative and mixed method research data (2021). Los Angeles, CA: SocioCultural Research Consultants, LLC. Available at: www.dedoose.com. Accessed July 9, 2021.
- Code saturation versus meaning saturation: how many interviews are enough?.Qual Health Res. 2017; 27: 591-608https://doi.org/10.1177/1049732316665344
- Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices.Acta Paediatr. 2017; 107: 289-293https://doi.org/10.1111/apa.14098
- End-of-life decision-making for children with severe developmental disabilities: the parental perspective.Res Dev Disabil. 2016; 49-50: 235-246https://doi.org/10.1016/j.ridd.2015.12.006
- Considering quality of life in end-of-life decisions for severely disabled children.Res Dev Disabil. 2018; 73: 67-75https://doi.org/10.1016/j.ridd.2017.12.015
- Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise.J Pediatr Nurs. 2001; 16: 110-119https://doi.org/10.1053/jpdn.2001.23157
- Family-provided health care for children with special health care needs.PEDIATRICS. 2017; 139e20161287https://doi.org/10.1542/peds.2016-1287
- Certainty of decisions: a process-based model for decision making for children with severe neurological impairment.Clin Pediatr. 2018; 57: 1227-1231https://doi.org/10.1177/0009922817740668
- When all you have is quality of life - making medical decisions in the face of uncertainty.N Engl J Med. 2020; 383: 1507-1509https://doi.org/10.1056/NEJMp2001574
- The impact of technology dependence on children and their families.J Pediatr Health Care. 2013; 27: 451-459https://doi.org/10.1016/j.pedhc.2012.05.003
- I could never prepare for something like the death of my own child”: Parental perspectives on preparedness at end of life for children with complex chronic conditions.J Pain Symptom Manage. 2020; 60: 1154-1162.e1https://doi.org/10.1016/j.jpainsymman.2020.06.035
- Families with special needs children: Family health, functioning, and care burden.J Am Psychiatr Nurses Assoc. 2014; 20: 398-407https://doi.org/10.1177/1078390314561326
- The spectrum of caregiving in palliative care for serious, advanced, rare diseases: key issues and research directions.J Palliat Med. 2016; 19: 698-705https://doi.org/10.1089/jpm.2015.0464
- Reconceptualizing how to support surrogates making medical decisions for critically ill patients.JAMA. 2021; (Published online)https://doi.org/10.1001/jama.2021.6445
- Effect of the promoting resilience in stress management intervention for parents of children with cancer (PRISM-P).JAMA Netw Open. 2019; 2: e1911578-14https://doi.org/10.1001/jamanetworkopen.2019.11578
- Development and pilot testing of a coping kit for parents of hospitalized children.Acad Pediatr. 2019; 19: 454-463https://doi.org/10.1016/j.acap.2018.11.001
Abbreviations: SNI—severe neurological impairment.