References

Truth with hope

References

Ahmann E (1998) Review and commentary: two studies regarding giving ‘bad news’. Pediatr Nurs 24(6): 554–556.

Alderson P, Hawthorne J, Killen M (2006) Parents’ experiences of sharing neonatal information and decisions: Consent, cost and risk. Soc Sci & Med 62(6): 1319–1329.

Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP (2000) SPIKES – A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 5(4): 302–311.

Baird G, McConachie H, Scrutton D (2000) Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child 83: 475–480.

Beauchamp TL, Childress JF (2001) Beneficence. In: Beauchamp TL, Childress JF, editors. Principles of biomedical ethics 5th edn. New York, NY: Oxford University Press.

Bourke-Taylor H, Cotter C, Stephan R (2015) Complementary, alternative and mainstream service use among families with young children with multiple disabilities: family costs to access choices. Phys Occup Ther Pediatr 35(3): 311–325. 

Brosig CL, Pierucci RL, Kupst MJ, Leuthner, SR (2007) Infant end-of-life care: the parents’ perspective. J Perinatol 27(8): 510–516. 

Calam R, Lambrenos K, Cox A, Weindling A (1999) Maternal appraisal of information given around the time of preterm delivery. J Reprod Infant Psyc 17(3): 267–280. 

Chauhan G, Long A (2000) Communication is the essence of nursing care. 2: Ethical foundations. Br J Nurs 9(15): 979–984.

Chiarello LA, Palisano RJ, Maggs JM et al. (2010) Family priorities for activity and participation of children and youth with cerebral palsy. Phys Ther 90(9): 1254–1264.

Dunst CJ, Boyd K, Trivette CM et al. (2002) Family‐oriented program models and professional helpgiving practices. Fam Relations 51(3): 221–229. 

Eliasson AC, Krumlinde Sundholm L, Rösblad B et al. (2006) The Manual Ability Classification System (MACS) for children with cerebral palsy: Scale development and evidence of validity and reliability. Dev Med Child Neurol 48: 549–554. 

Feudtner C (2009) The breadth of hopes. N Engl J Med 361(24): 2306–2307. 

Gibson BE, Teachman G, Wright V, Fehlings D, Young NL, McKeever P (2012) Children’s and parents’ beliefs regarding the value of walking: Rehabilitation implications for children with cerebral palsy. Child Care Health Dev 38(1): 61–69. 

Girgis A, Sanson-Fisher RW (1998) Breaking bad news. 1: Current best advice for clinicians. Behav Med 24(2): 53–59. 

Green SE (2002) Mothering Amanda: Musings on the experience of raising a child with cerebral palsy. J Loss Trauma 7(1): 21–34. 

Hallberg U, Oskarsdottir S, Klingberg G (2010) 22q11 deletion syndrome – the meaning of a diagnosis. A qualitative study on parental perspectives. Child Care Health Dev 36(5): 719–725. 

Hanna S, Rosenbaum P, Bartlett D et al. (2009) Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years. Dev Med Child Neurol 51(4): 295–302. 

Harnett A, Tierney E, Guerin S (2009) Convention of hope-communicating positive realistic messages to families at the time of a child’s diagnosis with disabilities. Br J Learn Disabil 37(4): 257–264. 

Huang YP, Kellet UM, St John W (2010) Cerebral palsy: Experiences of mothers after learning their child’s diagnosis. J Adv Nurs 66(6): 1213–1221. 

Jan M, Girvin JP (2002) The communication of neurological bad news to parents. Can J Neuro Sci 29(1): 78–82. 

Jedlicka-Köhler I, Gotz M, Eichler I (1996) Parents’ recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics 97(2): 204–209. 

Jones MA, McEwen IR, Neas BR (2012) Effects of power wheelchairs on the development and function of young children with severe motor impairments. Pediatr Phys Ther 24(2): 131–140. 

Klein S, Wynn K, Ray L et al. (2011) Information sharing during diagnostic assessments: What is relevant for parents? Phys Occup Ther Pediatr 31(2): 120–132. 

Larivière-Bastien D, Majnemer A, Shevell M, Racine E (2011) Perspectives of adolescents and young adults with cerebral palsy on the ethical and social challenges encountered in healthcare services. Narrative Inquiry Bioethics 1(1): 43–54. 

Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative care: Challenges and emerging ideas. The Lancet 371(9615): 852–864. 

Meyer EC, Burns JP, Griffith JL, Truog RD (2002) Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 30(1): 226–231. 

Novak I, Msall M (2014) Cerebral palsy. In: Malcom WF, editor. Beyond the NICU: Comprehensive care of the high-risk infant. New York, NY: McGraw Hill Professional.

Palisano R, Rosenbaum P, Walter S, Russel D, Wood E, Galuppi B (1997) Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 39(4): 214–223. 

Pain H (1999) Coping with a child with disabilities from the parents’ perspective: The function of information. Child Care Health Dev 24(4): 299–312. 

Piggot J, Paterson J, Hocking C (2002) Participation in home therapy programs for children with cerebral palsy: A compelling challenge. Qual Health Res 12(8): 1112–1129. 

Pollock N, Stewart D (1998) Occupational performance needs of school-aged children with physical disabilities in the community. Phys Occup Ther Pediatr 18(1): 55–68. 

Racine E, Bell E, Shevell M (2014) Ethics in neurodevelopmental disability. In: Bernat JL, Beresford R, editors. Handbook of clinical neurology: Ethical and legal issues in neurology Series 3, Chapter 21. Edinburgh: Elsevier. 

Rahi JS, Manaras I, Tuomainen H, Hundt GL (2004) Meeting the needs of parents around the time of diagnosis of disability among their children: Evaluation of a novel program for information, support, and liaison by key workers. Pediatrics 114(4): e477–e482. 

Reid A, Imrie H, Brouwer E et al. (2011) ‘If I knew then what I know now’: Parents’ reflection on raising a child with cerebral palsy. Phys Occup Ther Pediatr 31(2): 169–183. 

Rosenbaum P, King S, Law M, King G, Evans J (1998) Family-centred service: A conceptual framework and research review. Phys Occup Ther Pediatr 18(1): 1–20. 

Rosenbaum P, Palisano R, Burlett D, Galuppi B, Russel D (2008) Development of the gross motor function classification system for cerebral palsy. Dev Med Child Neurol 50: 249–253. 

Rosenbaum PL, Walter SD, Hanna SE et al. (2002) Prognosis for gross motor function in cerebral palsy: Creation of Motor Development Curves. JAMA 288(11): 1357–1363. 

Sardell AN, Trierweiler S (1993) Disclosing the cancer diagnosis procedures that influence patient hopefulness. Cancer 72: 3355–3365. 

Schuengel C, Rentinck IC, Stolk J et al. (2009) Parents’ reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability. Child Care Health Dev 35(5): 673–680. 

Simpson C (2004) When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics 18(5): 428–447.

Stewart D, Stavness C, King G, Antle B, Law M (2006) A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Phys Occup Ther Pediatr 26(4); 5–23. 

Sullivan J, Monagle P, Gillam L (2013). What parents want from doctors in end-of-life decision-making for children. Arch Dis Child 99: 216–220. 

Tattersall MHN, Butow PN, Griffin AM, Dunn SM (1994) The take home message: Patients prefer consultation audiotapes to summary letters. J Clin Oncol 12(6): 1305–1311. 

Walsh RA, Girgis A, Sanson-Fisher RW (1998) Breaking bad news 2: What evidence is available to guide clinicians? Behav Med 24(2): 61–72. 

Zeigler VL (2003) Ethical principles and parental choice: treatment options for neonates with hypoplastic left heart syndrome. Pediatr Nurs 29(1): 65–74.