Neuromuscular Disorders
Volume 19, Issue 10 , Pages 733-738 , October 2009

Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy: April 24–25, 2008, Miami, Florida

  • James Poysky

      Affiliations

    • School of Allied Health Sciences, Baylor College of Medicine, One Baylor Plaza, MS: BCM115, Houston, TX 77030, USA
    • Corresponding Author InformationCorresponding author. Tel.: +1 832 217 0065.
    • On behalf of the Behavior in DMD Study Group.
  • ,
  • Kathi Kinnett

      Affiliations

    • Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229, USA

Received 10 July 2009 ,Revised 19 July 2009 ,Accepted 23 July 2009.

References 

  1. Gravelle AM. Caring for a child with a progressive illness during the complex chronic phase: parents’ experience of facing adversity. J Adv Nurs. 1997;25:738–745
  2. Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. J Pediatr Psychol. 2003;28(7):473–484
  3. Green JM, Murton FE. Diagnosis of Duchenne muscular dystrophy: parents’ experiences and satisfaction. Child Care Health Dev. 1996;22(2):113–128
  4. Firth MA. Diagnosis of Duchenne muscular dystrophy: experiences of parents of sufferers. Br Med J. 1983;286:700–701
  5. Firth M, Gardner-Medwin D, Hosking G, Wilkinson E. Interviews with parents of boys suffering from Duchenne muscular dystrophy. Dev Med Child Neurol. 1983;25:466–471
  6. Samson A, Tomiak E, Dimillo J, Lavigne R, Miles S, Choquette M, et al. The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human beyond the illness. Chronic Illn. 2009;5(2):103–114
  7. Schoefl R. Breaking bad news. Dig Dis. 2008;26:56–58
  8. Freed GL, Dunham KM, Switalski KE, Jones MD, McGuinness GA. Research Advisory Committee of the American Board of Pediatrics. Pediatric fellows: perspectives on training and future scope of practice. Pediatrics. 2009;123(Suppl. 1):S31–S37
  9. Rider EA, Volkan K, Hafler JP. Pediatric residents’ perceptions of communication competencies: implications for teaching. Med Teach. 2008;30(7):e208–e217
  10. Cotton S, Voudouris N, Greenwood KM. Association between intellectual functioning and age in children with Duchenne muscular dystrophy: further results from a meta-analysis. Dev Med Child Neurol. 2005;73:257–265
  11. Hendriksen JGM, Vles JSH. Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. J Child Neurol. 2008;23(5):477–481
  12. Hinton VJ, Goldstein EM. Duchenne muscular dystrophy. In:  Mazzocco MMM,  Ross JL editor. Neurogenetic developmental disorders. Cambridge: MIT Press; 2007;p. 105–131
  13. Poysky J. Behavior in DMD Study Group. Behavior patterns in Duchenne muscular dystrophy: report on the Parent Project Muscular Dystrophy behavior workshop 8–9 of December 2006, Philadelphia, USA. Neuromuscul Disord. 2007;17(11–12):986–994
  14. Tates K, Elbers E, Meeuwesen L, Bensing J. Doctor–parent–child relationships: a ‘pas de trois’. Patient Educ Couns. 2002;48(1):1–3
  15. Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care. 2007;5:355–365
  16. Britto MT, DeVellis RF, Hornung RW, DeFriese GH, Atherton HD, Slap GB. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics. 2004;114(5):1272–1280
  17. Eakes GG, Burke ML, Hainsworth MA. Middle range theory of chronic sorrow. Image J Nurs Scholarsh. 1998;30(2):179–184
  18. Hainsworth MA, Eakes GG, Burke ML. Coping with chronic sorrow. Issues Ment Health Nurs. 1994;15(1):59–66
  19. Abi Daoud MS, Dooley JM, Gordon KE. Depression in parents of children with Duchenne muscular dystrophy. Pediatr Neurol. 2004;31(1):16–19
  20. Bothwell JE, Dooley JM, Gordon KE, MacAuley A, Camfield PR, MacSween J. Duchenne muscular dystrophy – parental perceptions. Clin Pediatr (Phila). 2002;41(2):105–109
  21. Sharpe D, Rossiter L. Siblings of children with chronic illness: a meta-analysis. J Pediatr Psychol. 2002;27(8):699–710
  22. Bellin MH, Kovacs P. Fostering resilience in siblings of youths with a chronic health condition: a review of the literature. Health Soc Work. 2006;31(3):209–216
  23. Meyer DJ, Vadasy PF. Sibshops: workshops for siblings of children with special needs. Baltimore: Paul H. Brookes; 1994;

PII: S0960-8966(09)00574-4

doi: 10.1016/j.nmd.2009.07.011

Neuromuscular Disorders
Volume 19, Issue 10 , Pages 733-738 , October 2009