Neuromuscular Disorders
Volume 18, Issue 12 , Pages 983-988 , December 2008

Being the lifeline: The parent experience of caring for a child with neuromuscular disease on home mechanical ventilation

  • Jean K. Mah

      Affiliations

    • Department of Pediatrics, Faculty of Medicine, University of Calgary, 2888 Shaganappi Trail N.W., Calgary, AB, Canada T3B 6A8
    • Department of Clinical Neurosciences, Faculty of Medicine, University of Calgary, Calgary, AB, Canada T2N 2T9
    • Corresponding Author InformationCorresponding author. Address: Department of Pediatrics, Faculty of Medicine, University of Calgary, 2888 Shaganappi Trail N.W., Calgary, Alta., Canada T3B 6A8. Tel.: +1 403 955 2296; fax: +1 403 955 2922.
    • ,
  • Jennifer E. Thannhauser

      Affiliations

    • Division of Applied Psychology, Faculty of Education, University of Calgary, Calgary, AB, Canada T2N 1N4
    • ,
  • Deborah A. McNeil

      Affiliations

    • Decision Support and Research Team, Calgary Health Region, Calgary, AB, Canada T3B 6A8
    • Community Health Sciences, Faculty of Medicine, University of Calgary, Calgary, AB, Canada T2N 4N1
    • ,
  • Deborah Dewey

      Affiliations

    • Department of Pediatrics, Faculty of Medicine, University of Calgary, 2888 Shaganappi Trail N.W., Calgary, AB, Canada T3B 6A8
    • Community Health Sciences, Faculty of Medicine, University of Calgary, Calgary, AB, Canada T2N 4N1
    • Behavioural Research Unit, Alberta Children’s Hospital, Calgary, AB, Canada T3B 6A8

Received 22 February 2008 ,Revised 23 June 2008 ,Accepted 4 September 2008.

References 

  1. Buechner F. Now & then: a memoir of vocation. New York: HarperCollins; 1983;p. 2–3
  2. Emery AE. Population frequencies of inherited neuromuscular diseases – a world survey. Neuromuscul Dis. 1991;1:19–29
  3. Gozal D. Pulmonary manifestations of neuromuscular disease with special reference to Duchenne muscular dystrophy and spinal muscular atrophy. Pediatr Pulmonol. 2000;29:141–150
  4. Amin RS, Fitton CM. Tracheostomy and home ventilation in children. Semin Neonatol. 2003;8:127–135
  5. Bach JR, Alba AS, Saporito LR. Intermittent positive pressure ventilation via the mouth as an alternative to tracheostomy for 257 ventilator users. Chest. 1993;103:174–182
  6. Bach JR, Ishikawa Y, Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy. Chest. 1997;112:1024–1028
  7. Annane D, Orlikowski D, Chevret S, Chevrolet JC, Raphael JC. Nocturnal mechanical ventilation for chronic ventilation in patients with neuromuscular and chest wall disorders. Cochrane Database Syst Rev. 2007;4:CD001941
  8. Kohler M, Clarenbach CF, Boni L, Brack T, Russi EW, Bloch KE. Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med. 2005;172:1032–1036
  9. Katz S, Selvadurai H, Keilty K, Mitchell M, MacLusky I. Outcome of noninvasive positive pressure ventilation in pediatric neuromuscular disease. Arch Dis Child. 2004;89:121–124
  10. Young HK, Lowe A, Fizgerald DA, et al. Outcome of noninvasive ventilation in children with neuromuscular disease. Neurology. 2007;68:198–201
  11. Simonds AK. Respiratory support for the severely handicapped child with neuromuscular disease: ethics and practicality. Semin Respir Crit Care Med. 2007;28:342–354
  12. Finder JD, Birnkrant D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus statement. Am J Respir Crit Care Med. 2004;170:456–465
  13. Bach JR, Baird JS, Plosky D, Navado J, Weaver B. Spinal muscular atrophy type 1: management and outcomes. Pediatr Pulmonol. 2002;34:16–22
  14. Aday LH, Wegener DH, Andersen RM, Aitken MJ. Home care for ventilator-assisted children. Health Aff (Millwood). 1989;8:137–147
  15. Simonds AK. Ethical aspects of home long term ventilation in children with neuromuscular disease. Paediatr Respir Rev. 2005;6:209–214
  16. Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. J Pediatr Psychol. 2003;28:473–484
  17. Abi Daoud MS, Dooley JM, Gordon KE. Depression in parents of children with Duchenne muscular dystrophy. Pediatr Neurol. 2004;31:16–19
  18. Laufersweiler-Plass C, Rudnik-Schoneborn S, Zerres K, Backes M, Lehmkuhl G, von Gontard A. Behavioural problems in children and adolescents with spinal muscular atrophy and their siblings. Dev Med Child Neurol. 2003;45:44–49
  19. Heaton J, Noyes J, Sloper P, Shah R. Families’ experiences of caring for technology dependent children: a temporal perspective. Health Soc Care Community. 2005;13:441–450
  20. Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics. 2006;117:e48–e60
  21. Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy: physicians’ beliefs and practices. Chest. 2001;119:940–946
  22. Lloyd-Owen SJ, Donaldson GC, Ambrosino N, et al. Patterns of home mechanical use in Europe: results from the Eurovent survey. Eur Respir J. 2005;25:1025–1031
  23. Carnevale FA, Canoui P, Hubert P, et al. The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France. J Child Health Care. 2006;10:69–82
  24. 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;70:129–135
  25. Hardart MK, Burns JP, Truoq RD. Respiratory support in spinal muscular atrophy type I: a survey of physician practices and attitudes. Pediatrics. 2002;110:e24
  26. Sritippayawan S, Kun SS, Keens TG, Davidson Ward SL. Initiation of home mechanical ventilation in children with neuromuscular diseases. J Pediatr. 2003;142:481–485
  27. Edwards EA, Hsiao K, Nixon GM. Paediatric home ventilator support: the Auckland experience. J Paediatr Child Health. 2005;41:652–658
  28. van Manen M. Researching lived experience human science for an action sensitive pedagogy. London, ON: Althouse; 1990;p. 7
  29. Morse JM. Enhancing the usefulness of qualitative inquiry: gaps, directions, and responsibilities. Qual Health Res. 2002;12:1419–1426
  30. Creswell JW. Five qualitative traditions of inquiry. In qualitative inquiry and research design: choosing among the five traditions. Thousand Oaks, CA: Sage; 1998;p. 51–55
  31. Miles MB, Huberman AM. Qualitative data analysis. 2nd ed.. Thousand Oaks, CA: Sage; 1994;p. 27–34
  32. Kuzel AJ. Sampling in qualitative inquiry. In:  Crabtree BF,  Miller WL editor. Doing qualitative research. 2nd ed.. Thousand Oaks, CA: Sage; 1999;p. 33–45
  33. van Kesteren RG, Velthuis B, van Leyden LW. Psychosocial problems arising from home ventilation. Am J Phys Med Rehabil. 2001;80:439–446
  34. Meadows LM, Morse JM. Constructing evidence within the qualitative project. In:  Morse JM,  Swanson JM,  Kuzel AJ editor. The nature of qualitative evidence. Thousand Oaks, CA: Sage; 2001;p. 187–201
  35. Bazeley P, Richards L. The NVivo qualitative project book. London: Sage; 2000;
  36. Giorgi A. Theoretical justification for the use of descriptions. In:  Ashworth P,  Giorgi A,  de Konig A editor. Qualitative research in psychology. Pittsburg PA: Duquesne University Press; 1986;p. 3–22
  37. Angen JM. Evaluating interpretive inquiry: reviewing the validity debate and opening the dialogue. Qual Health Res. 2000;10:378–395
  38. Miles MB, Huberman AM. Qualitative data analysis. 2nd ed.. Thousand Oaks CA: Sage; 1994;p. 64
  39. Crabtree BF, Miller WL. Researching practice settings: a case study approach. In:  Crabtree BF,  Miller WL editor. Doing qualitative research. 2nd ed.. Thousand Oaks CA: Sage; 1999;p. 293–312
  40. O’Brien ME. Living in a house of cards: family experiences with long-term childhood technology dependence. J Pediatr Nurs. 2001;16:13–22
  41. Mah JK, Thannhauser JE, Kolski H, Dewey D. Parental stress and quality of life in children with neuromuscular disease. Pediatr Neurol. 2008;39:102–107
  42. Lumenq JC, Warschausky SA, Nelson VS, Auqenstein K. The quality of life of ventilator-assisted children. Pediatr Rehabil. 2001;4:21–27

PII: S0960-8966(08)00621-4

doi: 10.1016/j.nmd.2008.09.001

Neuromuscular Disorders
Volume 18, Issue 12 , Pages 983-988 , December 2008

Article Tools

* Image Usage & Resolution