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Original Article

Parent reported outcomes of quality care and satisfaction in the context of a life-limiting fetal diagnosis

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Pages 894-899 | Received 18 Feb 2016, Accepted 25 May 2016, Published online: 17 Jun 2016

References

  • Hoyert DL, Xu JQ. Deaths: preliminary data for 2011. Natl Vital Stat Rep 2012;61:1–51
  • Mathews MS, MacDorman MF, Thoma ME. Infant mortality statistics from the 2013 period linked birth/infant death data set. Natl Vital Stat Rep 2015;64:1–30
  • Kobler K, Limbo R. Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. J Perinat Neonatal Nurs 2011;25:32–41
  • Wool C. State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs 2013;42:372–82
  • Howard ED. Family-centered care in the context of fetal abnormality. J Perinat Neonatal Nurs 2006;20:237–42
  • American College of Obstetricians and Gynecologists, Committee on Ethics and American Academy of Pediatrics, Committee on Bioethics. Clinical report: maternal-fetal intervention and fetal care centers. Pediatr 2011;128:e473–8
  • World Health Organization [Internet]. 2016. Available from: http://www.who.int/cancer/palliative/definition/en/ [last accessed 5 May 2016]
  • Dy SM, Kiley KB, Ast K, et al. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American academy of hospice and palliative medicine and hospice and palliative nurses association. J Pain Symptom Manage 2015;49:773–81
  • Center for Advanced Palliative Care. Measuring Quality & Impact of Palliative Care Programs [Internet]. 2015. Available from: https://www.capc.org/topics/palliative-care-guidelines-quality-standards/ [last accessed 5 May 2016]
  • The Joint Commission. Performance Measurement Requirements for Palliative Care [Interent]. 2015. Available from: http://www.jointcommission.org/certification/performance_measurement_requirements_palliative_care.aspx [last accessed 5 May 2016]
  • National Consensus Project for Quality Palliative Care [Internet]. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. 2013. Pittsburgh (PA). Available from http://www.nationalconsensusproject.org/ [last accessed 5 May 2016]
  • Asplin N, Wessel H, Marions L, Öhman SG. Pregnant women's experiences, needs, and preferences regarding information about malformations detected by ultrasound scan. Sex Reprod Healthc 2012;3:73–8
  • Kamal AH, Hanson LC, Casarett DJ, et al. The quality imperative for palliative care. J Pain Symptom Manage 2014;49:243–53
  • Ware JE, Snyder MK, Wright WR, Davies AR. Defining and measuring patient satisfaction with medical care. Eval Program Plann 1983;6:247–63
  • Wool C. Instrument development: parental satisfaction and quality indicators of perinatal palliative care. J Hosp Palliat Nurs 2015;17:301–8
  • Wool C. Instrument psychometrics: parental satisfaction and quality indicators of perinatal palliative care. J Palliat Med 2015;18:872–7
  • Kim M, Mallory C. Statistics for evidence-based practice in nursing. Burlington (MA): Jones & Bartlett Learning; 2014
  • Côté-Arsenault D, Denney-Koelsch E. “Have no regrets:” parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med 2016;154:100–9
  • Feudtner C, Munson D. The ethics of perinatal palliative care. In: Ravitsky V, Fiester A, Caplan AL eds. The Penn center guide to bioethics. New York (NY): Springer; 2009
  • Lalor JG, Begley CM, Galavan E. Recasting hope: a process of adaptation following fetal anomaly diagnosis. Soc Sci Med 2009;68:462e472
  • Côté-Arsenault DY, Denney-Koelsch E. “My baby is a person”: parents' experiences with life-threatening fetal diagnosis. J Palliat Med 2011;14:1302–8
  • Field M, Behrman R. When children die: improving palliative and end-of-life care for children and their families. Washington (DC): National Academies Press; 2003
  • Wool C, Côté-Arsenault D, Black B, et al. Provision of services in perinatal palliative care: a multicenter survey in the United States. J Palliat Med 2016;19:279–85
  • Capitulo KL. Evidence for healing interventions with perinatal bereavement. MCN Am J Matern Child Nurs 2005;30:389–96
  • Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med 2015;29:193–210
  • Gold KJ, Dalton VK, Schwenk TL. Hospital care for parents after perinatal death. Obstet Gynecol 2007;109:1156–66
  • Koopmans L, Wilson T, Cacciatore J, Flenday V. Support for mothers, fathers and families after perinatal death. Cochrane Database Syst Rev 2013;6:CD000452
  • Hennegan JM, Henderson J, Redshaw M. Contact with the baby following stillbirth and parental mental health and well-being: a systematic review. BMJ Open 2015;5:e008616
  • Simkin P. Just another day in a woman's life? Part II: nature and consistency of women's long-term memories of their first birth experiences. Birth 1992;19:64–81
  • Lalor JG, Begley CM, Galavan E. A grounded theory study of information preference and coping styles following antenatal diagnosis of foetal abnormality. J Adv Nurs 2008;64:185–94

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