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How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities

292 I.H. Zaal-Schuller

292 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 References Avis, M., & Reardon, R. (2008). Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: A qualitative study. Journal of Child Health Care: for Professionals Working with Children in the Hospital and Community, 12(1), 7–17. http://dx.doi.org/10.1177/1367493507085615 Berry, J. G., Hall, D. E., Kuo, D. Z., Cohen, E., Agrawal, R., Feudtner, C., . . . & Neff, J. (2011). Hospital utilization and characteristics of patients experiencing recurrent readmissions within children’s hospitals. JAMA, 305(7), 682–690. http://dx.doi.org/10.1001/jama.2011.122 Bittles, A. H., Petterson, B. A., Sullivan, S. G., Hussain, R., Glasson, E. J., & Montgomery, P. D. (2002). The influence of intellectual disability on life expectancy. Journals of Gerontology. Series A: Biological Sciences and Medical Sciences, 57(7), M470–M472. 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I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 293 Simon, T. D., Berry, J., Feudtner, C., Stone, B. L., Sheng, X., Bratton, S. L., . . . & Srivastava, R. (2010). Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 126(4), 647–655. http://dx.doi.org/10.1542/peds.2009-3266 Sleigh, G. (2005). Mothers’ voice: A qualitative study on feeding children with cerebral palsy Child: Care. Health and Development, 31(4), 373–383. http://dx.doi.org/10.1542/peds.2009-326x Strauss, D. J., Shavelle, R. M., & Anderson, T. W. (1998). Life expectancy of children with cerebral palsy. Pediatric Neurology, 18(2), 143–149. Studdert, D. M., Burns, J. P., Mello, M. M., Puopolo, A. L., Truog, R. D., & Brennan, T. A. (2003). Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics, 112, 553–558. Retrieved from. http://pediatrics.aappublications.org/content/112/3/553. full.pdf Sullivan, J., Monagle, P., & Gillam, L. (2014). What parents want from doctors in end-of-life decision-making for children. Archives of Disease in Childhood, 99(3), 216–220. http://dx.doi.org/10.1136/archdischild-2013-304249 Tamburro, R. F., Shaffer, M. L., Hahnlen, N. C., Felker, P., & Ceneviva, G. D. (2011). Care goals and decisions for children referred to a pediatric palliative care program. Journal of Palliative Medicine, 14(5), 607–613. http://dx.doi.org/10.1089/jpm.2010.0450 Tan, J., Docherty, S., Barfield, R., & Brandon, D. (2012). Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. Journal of Palliative Medicine, 15(5), 579–584. http://dx.doi.org/10.1089/jpm.2011.0357 van der Heide, A., Deliens, L., Faisst, K., Nilstun, T., Norup, M., Paci, E., . . . & van der Maas, P. J. (2003). End-of-life decision-making in six European countries: Descriptive study. Lancet, 362(9381), 345–350. http://dx.doi.org/10.1016/s0140-6736(03)14019-6 van Schrojenstein Lantman-de Valk, H. M., van den Akker, M., Maaskant, M. A., Haveman, M. J., Urlings, H. F., Kessels, A. G., & Crebolder, H. F. (1997). Prevalence and incidence of health problems in people with intellectual disability. Journal of Intellectual Disability Research, 41(1), 42–51. Verhagen, A. A., de Vos, M., Dorscheidt, J. H., Engels, B., Hubben, J. H., & Sauer, P. J. (2009). Conflicts about end-of-life decisions in NICUs in The Netherlands. Pediatrics, 124(1), e112–e119. http://dx.doi.org/10.1542/peds.2008-1839 Wilkinson, D., Truog, R., & Savulescu, J. (2015). In favour of medical dissensus: Why we should agree to disagree about end-of-life decisions. Bioethics, http://dx.doi.org/10.1111/bioe.12162 Williams, C., Cairnie, J., Fines, V., Patey, C., Schwarzer, K., Aylward, J., . . . & Kirpalani, H. (2009). Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatrics, 123(1), e87–e95. http://dx.doi.org/10.1542/peds.2007-2950 Xafis, V., Wilkinson, D., & Sullivan, J. (2015). What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback. BMC Palliative Care, 14(1) http://dx.doi.org/10.1186/s12904-015-0024-0

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