The lived experience of hope among parents of a child with Duchenne muscular dystrophy: Perceiving the human being beyond the illness

Chronic Illness

Volumn 5, Issue 2, 2009, Pages 103-114

  Samson, André ^a   Tomiak, E ^b   Dimillo, J ^a   Lavigne, R ^a   Miles, S ^b   Choquette, M ^b   Chakraborty, P ^b   Jacob, P ^b  

^a UNIVERSITY OF OTTAWA   (Canada)

^b CHILDREN S HOSPITAL OF EASTERN ONTARIO   (Canada)

Author keywords

Childhood chronic illness; Cognitive appraisal; Duchenne muscular dystrophy (DMD); Parental hope; Psychosocial adaptation

Indexed keywords

ADAPTATION; ADULT; ARTICLE; CHRONIC DISEASE; EXPERIENCE; FEMALE; HOPE; HUMAN; INTERVIEW; MALE; PARENTAL ATTITUDE; PERCEPTION; X CHROMOSOME LINKED MUSCULAR DYSTROPHIC MOUSE; ADAPTIVE BEHAVIOR; ADOLESCENT; CHILD; CHILD PARENT RELATION; DUCHENNE MUSCULAR DYSTROPHY; MENTAL STRESS; MIDDLE AGED; PARENT; SOCIAL SUPPORT; YOUNG ADULT;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; CHILD; FEMALE; HUMANS; MALE; MIDDLE AGED; MUSCULAR DYSTROPHY, DUCHENNE; PARENT-CHILD RELATIONS; PARENTS; SOCIAL PERCEPTION; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 66549112009     PISSN: 17423953     EISSN: 17459206     Source Type: Journal    
DOI: 10.1177/1742395309104343     Document Type: Article

References (38)

1. Korf BR, Darras BT, Urion DK Dystrophinopathies. Available at: http://www.genetests.org (accessed 22 October 2008).
2. Giliberto F., Ferreiro V., Dalamon V., Szijan I. Dystrophin deletions and cognitive impairment in Duchenne/Becker muscular dystrophy. Néurol Rés 2004 ; 26: 83-7.
3. Polakoff RJ, Morton AA, Koch KD, Rios CM The psychosocial and cognitive impact of Duchenne's muscular dystrophy. Sémin Pédiatr Néurol 1998 ; 5: 116-23.
4. Jacob P. Current approach to Duchenne muscular dystrophy. Méd North Am 1989 ; 34: 6301-3.
5. Nereo NE, Fee RJ, Hinton VJ Parental stress in mothers of boys with Duchenne muscular dystrophy. J Pédiatr Psychol 2003 ; 28: 473-84.
6. Samson A., Siam H. Adapting to major chronic illness: a proposal for a comprehensive task-model approach. Patiént Educ Couns 2008 ; 70: 426-29.
7. Cohen F., Lazarus RS Coping with the stress of illness. In: Stone CG, Cohen F, Adler NE, eds. Héalth psychology: a handbook, San Francisco, CA: Jossey-Bass, 1979: 217-54.
8. Moos RH, Tsu DV Coping with physical illnéss, New York: Plenum Medical Company, 1977.
9. Samson A., Siam H., Lavigne R. Psychosocial adaptation to chronic illness: description and illustration on an integrated task-based model. Intérvéntion 2007 ; 127: 16-28.
10. Tomiak EM, Samson A., Miles SA, Choquette MC, Chakraborty PK, Jacob PJ Gender-specific differences in the psychosocial adjustment of parents of a child with Duchenne Muscular Dystrophy (DMD): two points of view for a shared experience. Qual Rés J 2007 ; 7: 2-21.
11. Kim DS, Kim HS, Schwartz-Barcott D., Zucker D. The nature of hope in hospitalized chronically ill patients. Int J Nurs Stud 2006 ; 43: 547-56.
12. Nekolaichuk CL, Jevne RF, Maguire TO Structuring the meaning of hope in health and illness. Soc Sci Méd 1999 ; 48: 591-605. (Pubitemid 29057138)
13. Gelling L. The role of hope for relatives of critically ill patients: a review of the literature. Nurs Stand 1999 ; 14: 33-8.
14. Wang C. -e H. Developing a concept of hope from a human science perspective. Nurs Sci Q 2000 ; 13: 248-51.
15. Benzein E., Norberg A., Saveman B-I. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Méd 2001 ; 15: 117-26.
16. Cutcliffe JR, Herth K. The concept of hope in nursing 1: its origins, background and nature. Br J Nurs 2002 ; 11: 832-40.
17. Farren CJ, Wilken CS, Popovich JM Clinical assessment of hope. Issués Mént Héalth 1992 ; 13: 129-38.
18. Davidson PM, Dracup K., Phillips J., Daly J., Padilla G. Preparing for the worst while hoping for the best: the relevance of hope in the heart failure illness trajectory. J Cardiovasc Nurs 2007 ; 22: 159-65.
19. Yates P. Towards the reconceptualization of hope for patients with a diagnosis of cancer. J Adv Nurs 1993 ; 18: 701-6.
20. Little M., Sayers EJ While there's life... hope and the experience of cancer. Soc Sci Méd 2004 ; 59: 1329-37.
21. Clayton JM, Butow PN, Arnold RM, Tattersall MHN. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients with their caregivers. Cancér 2005 ; 103: 1965-75.
22. Elliott JA, Oliver IN Hope and hoping in the talk of dying cancer patients. Soc Sci Méd 2007 ; 64: 138-49.
23. Penson RT, Gu F., Harris S., ét al. Hope. Oncologist 2007 ; 12: 1105-13.
24. Kylma J., Vehvilainen-Julkumen K., Lahdevirta J. Ethical considerations in a grounded theory study on the dynamics of hope in HIV-positive adults and their significant others. Nurs Ethics 1999 ; 6: 224-39.
25. Kylma J. Issues and Innovations in Nursing Practice. Dynamics of hope in adults living with HIV/AIDS: a substantive theory. J Adv Nurs 2005 ; 52: 620-30.
26. Herth KA, Cutcliffe JR The concept of hope in nursing 3: hope and palliative care nursing. Br J Nurs 2002 ; 11: 977-83.
27. Feudtner C. Hope and the prospects of healing at the end of life. J Altérn Compléméntary Méd 2005 ; 11: S23 - S30.
28. Fanos JH, Gelinas DF, Foster RS, Postone N., Miller RG Hope in palliative care: from narcissism to self-transcendence in amyotrophic lateral sclerosis. J Palliat Méd 2008 ; 11: 470-5.
29. Kylma J. Juvakka T. Hope in parents of adolescents with cancer- factors endangering and engendering parental hope. Eur J Oncol Nurs 2007 11 262-71.
30. Larson E. Reframing the meaning of disability to families: the embrace of paradox. Soc Sci Méd 1998; 47: 865-75.
31. Kylma J, Juvakka T. Hope in parents of adolescents with cancer- factors endangering and engendering parental hope. Eur J Oncol Nurs 2007; 11: 262-71. 30. Larson E. Reframing the meaning of disability to families: the embrace of paradox. Soc Sci Méd 1998; 47: 865-75.
32. Padencheri S., Russell PSS. Challenging behaviours among children with intellectual disability: the hope busters ? J Léarn Disabil 2002 ; 6: 253-61.
33. Kirpalani HM, Parkin PC, Willan AR, ét al. Quality of life in spina bifida: importance of parental hope. Arch Dis Childhood 2000 ; 83: 293-7.
34. Eapen V., Revesz T. Psychosocial correlates of paediatric cancer in the United Arab Emirates. Support Care Cancer 2003 ; 11: 185-9.
35. Husserl E. Idéés directrices pour une phé nomenologie, Paris: Gallimard, 1950.
36. Giorgi A. De la méthode phénomenologique utilisée comme mode de recherche qualitative en sciences humaines: théorie, pratique et évaluation. In: Poupart J, Deslauries JP, Groulx LH, Laperrière A, Mayer R, Pires A, eds. La recherche qualitative, Montréal: Gaetan Morin éditeur, 1997: 341-63.
37. Karlsson G. Psychological qualitativé réséarch from a phénoménological pérspéctivé, Stockholm: Almgvist & Wiksell International, 1993.
38. Dufault K., Martocchio B. Hope: its spheres and dimensions. Nurs Clin North Am 1985 ; 20: 379-91.