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Developing an Interdisciplinary Palliative Care Plan for the Patient With Muscular Dystrophy

2005; Elsevier BV; Volume: 34; Issue: 7 Linguagem: Inglês

10.3928/0090-4481-20050701-12

1938-2359

Norbert Weidner,

Neurogenetic and Muscular Disorders Research

Developing an Interdisciplinary Palliative Care Plan for the Patient With Muscular Dystrophy Norbert J Weidner, MD, , MD Norbert J Weidner, MD Published OnlineJuly 01, 2005https://doi.org/10.3928/0090-4481-20050701-12Cited by:13PDFView Full Text ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinkedInRedditEmail SectionsMore"Developing an Interdisciplinary Palliative Care Plan for the Patient With Muscular Dystrophy." Pediatric Annals, 34(7), pp. 546–5521. Papazian O, Alfonso I. Adolescents with muscular dystrophies. Adolesc Med, 2002;13(3): 511-535. Google Scholar2. Boon H, Verhoef M, O'Haia D, Findlay B. From parallel practice to integrative health care: a conceptual framework. BAfC Health ServRes. 2004;4(1):15. Google Scholar3. Contro M, Larson J, Schofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatrie palliative care. Arch Pedialr Adolesc Med. 2002;156(1):14-19. Google Scholar4. Katezenbach JR, Smith DK. The Wisdom of Teams: Creating the High-Performance OrgaHfzarion.NewYork,NY: Harper Collins; 1993. Google Scholar5. Heinemann GZA. Team performance in health care-assessment and development. In: Stricker G, ed. Issues in the Practice of Psychology. New York, NY: Kluwer Academic/ Plenum Publishers; 2002:400. Google Scholar6. Hays RM, Haynes G, Geyer JR, Feudtner C. Communication at the end of life, hi: Carter B, Levitown M eds. Palliative Care for Infants, Children, and Adolescents: A Practical Approach. Baltimore, MD: The Johns Hopkins University Press; 2004:112-140. Google Scholar7. JonsenA,SeiglerM,WinsladeW. Clinical Ethics. 4th ed. New York, NY: Macmillan; 2001. Google Scholar8. Steele R. Experiences of families in which a child has a prolonged terminal illness: modifying factors. Ira J Palliat Nurs. 2002;8(9):4 18434. Google Scholar9. Ziring PR, Brazdziunas D, Cooley WC, et al. American Academy of Pediatrics. Committee on Children With Disabilities. Care coordination: integrating health and related systems of care for children with special health care needs. Pediatrics. 1999;104(4Pt 1):978-981. Google Scholar10. Gatchel RJ, Turk DC. Perspectives on pain: a historical overview, hi: Gatchel RJ, Turk DC, eds. Psychosocial Factors in Pain: Critical Perspectives. New York, NY: Guilford Publications; 1999:3-17. Google Scholar11. YaguraH,MiyaiI, SeikeY, Suzuki T, Yanagihara T. Benefit of inpatient multidisciplinary rehabilitation up to 1 year after stroke. Arch Phys Med Rehabil. 2003-,84(11): 1687-1691. Google Scholar12. Himelstein B, Hilden J, Boldt A, Weissman D. Pediatrie palliative care. N Engl J Med. 2004;350(17):1752-1762. Google Scholar13. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2Ptl):351-357. Google Scholar14. Wolfe J, Friebert S, Hilden J. Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am. 2002;49(5): 1043-1062. Google Scholar15. Steele R. Trajectory of certain death at an unknown time: children with neurodegenerative life-threatening illnesses. Can J Nurs Res. 2000;32(3):49-67. Google Scholar16. Pless IB. Clinical assessment: physical and psychological functioning. Pediatr Clin North Am. 1984;31(l):33-45. Google Scholar17. Fitzpatrick C, Barry C, Garvey C. Psychiatric disorder among boys with Duchenne muscular dystrophy. Dev Med Child Neurol. 1986;28(5):5 89-595. Google Scholar18. Leibowitz D, Dubowitz V. Intellect and behaviour in Duchenne muscular dystrophy. Dev Med Child Neurol. 1981;23(5):577-590. Google Scholar19. Hendriksen J. Psychosocial adjustment and coping with stress in DMD. Presented at: Parent Project Muscular Dystrophy 2004 Annual Conference; July 8-1 1, 2004; Cincinnati, OH. Google Scholar20. Thompson RJ, Zeman JL, Fanurik D, Sirotkin-Roses M. The role of parent stress and coping and family functioning in parent and child adjustment to Duchenne muscular dystrophy. JClinPsychol. 1992;48(1):11-19. Google Scholar21. Fitzpatrick C, Barry C. Communication within families about Duchenne muscular dystrophy. Dev Med Child Neurol. 1986;28(5):596-599. Google Scholar22. Davies B, Steele R, Collins J, Cook K, Smith S. The impact on families of respite care in a children's hospice program. J Palliat Care. 2004;20(4): 277-286. Google Scholar23. Miller JR. Family response to Duchenne muscular dystrophy. Loss, Grief, and Care. 1990; 4(34): 31-42. Google Scholar24. Dawson S, Kristjanson LJ. Mapping the journey: family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. J Palliat Care. 2003;19(1):3642. Google Scholar25. Britto MT, Devellis RF, Homung RW, et al. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics. 2004;114(5):1272-1280. Google Scholar26. Wolf SM. Guidelines on the Termination of Life -sustaining Treatment and the Care of the Dying. A Report by the Hastings Center. New York, NY: Briarcliff Manor, 1987. Google Scholar27. Informed consent, parental permission, and assent in pediatrie practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 1995;95(2):314-317. Google Scholar28. Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Cent Rep. 1997;27(6): 29-40. Google Scholar29. American Academy of Pediatrics Committee on Bioethics: Guidelines on foregoing life-sustaining medical treatment. Pediatrics. 1994;93(3):53 2-536. Google Scholar30. Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy: physicians' beliefs and practices. Chest. 2001; 1119(3):940-946. Google Scholar31. Bach JR, Campagnolo DI, Hoeman S. Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil. 1991;70(3): 129-135. Google Scholar32. Finder JD, Bimkrant D, Carl J, et al.; American Thoracic Society. Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus statement. Am J Respir Crii Care Med. 2004;170(4):456465. Google Scholar33. Wolfe L. Should parents speak with a dying child about impending death? N Engl J Med. 2004;351(12): 1251-1253. Google Scholar34. Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12): 1 175-1 186. Google Scholar35. Sanders CM. A comparison of adult bereavement in the death of a spouse, child, and parent. Omega. 1979-1980; 10(4): 303-322. Google Scholar Previous article Next article FiguresReferencesRelatedDetailsCited by Dallara A, Meret A and Saroyan J (2014) Mapping the Literature, Journal of Child Neurology, 10.1177/0883073814527159, 29:12, (1728-1738), Online publication date: 1-Dec-2014. Fujak A, Haaker G and Funk J (2014) Aktuelle Betreuungsstrategien bei Duchenne-MuskeldystrophieCurrent care strategies for Duchenne muscular dystrophy, Der Orthopäde, 10.1007/s00132-013-2217-7, 43:7, (636-642), Online publication date: 1-Jul-2014. Katz S, McKim D, Hoey L, Barrowman N, Kherani T, Kovesi T, MacLusky I and Mah J (2012) Respiratory management strategies for Duchenne muscular dystrophy: practice variation amongst canadian sub-specialists, Pediatric Pulmonology, 10.1002/ppul.22548, 48:1, (59-66), Online publication date: 1-Jan-2013. Geller G, Harrison K and Rushton C (2012) Ethical Challenges in the Care of Children and Families Affected by Life-Limiting Neuromuscular Diseases, Journal of Developmental & Behavioral Pediatrics, 10.1097/DBP.0b013e318267c62d, 33:7, (548-561), Online publication date: 1-Sep-2012. Clausen C, Strohschein F, Faremo S, Bateman D, Posel N and Fleiszer D (2012) Developing an Interprofessional Care Plan for an Older Adult Woman With Breast Cancer: From Multiple Voices to a Shared Vision, Clinical Journal of Oncology Nursing, 10.1188/12.CJON.E18-E25, 16:1, (E18-E25), Online publication date: 1-Feb-2012. Arias R, Andrews J, Pandya S, Pettit K, Trout C, Apkon S, Karwoski J, Cunniff C, Matthews D, Miller T, Davis M and Meaney F (2011) Palliative care services in families of males with duchenne muscular dystrophy, Muscle & Nerve, 10.1002/mus.22005, 44:1, (93-101), Online publication date: 1-Jul-2011. Oliveira A, Corrêa F, Valim M, Oliveira C and Corrêa J (2010) Determination of muscle fatigue index for strength training in patients with Duchenne dystrophy, Fisioterapia em Movimento, 10.1590/S0103-51502010000300002, 23:3, (351-360), Online publication date: 1-Sep-2010. Rushton C and Geller G (2010) Maladies neuromusculaires mettant en jeu le pronostic vital : intérêt d'une démarche palliative pour les enfants et leurs familles, Médecine Palliative : Soins de Support - Accompagnement - Éthique, 10.1016/j.medpal.2010.09.015, 9:6, (283-290), Online publication date: 1-Dec-2010. Rushton C and Geller G (2010) Life-threatening neuromuscular disorders: Interest in palliative care for children and their families, Médecine Palliative : Soins de Support - Accompagnement - Éthique, 10.1016/j.medpal.2010.03.008, 9:6, (e1-e6), Online publication date: 1-Dec-2010. Reed U (2009) Congenital muscular dystrophy. Part I: a review of phenotypical and diagnostic aspects, Arquivos de Neuro-Psiquiatria, 10.1590/S0004-282X2009000100038, 67:1, (144-168), Online publication date: 1-Mar-2009. Gofton T, Jog M and Schulz V (2014) A Palliative Approach to Neurological Care: A Literature Review, Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 10.1017/S0317167100007010, 36:03, (296-302), Online publication date: 1-May-2009. Kaldjian L, Curtis A, Shinkunas L and Cannon K (2008) Review Article: Goals of Care Toward the End of Life: A Structured Literature Review, American Journal of Hospice and Palliative Medicine®, 10.1177/1049909108328256, 25:6, (501-511), Online publication date: 1-Dec-2009. ANDREONI V, OBRECHT J and BOWDEN V (2007) Palliative Care Resources for the Health Professional, MCN: The American Journal of Maternal/Child Nursing, 10.1097/01.NMC.0000288002.72382.9f, 32:5, (305-310), Online publication date: 1-Sep-2007. Request Permissions InformationCopyright 2013, SLACK IncorporatedPDF download