A literature review of studies using qualitative research to explore chronic neuromuscular disease

Journal of Neuroscience Nursing

Volumn 43, Issue 3, 2011, Pages 172-182

  LaDonna, Kori A ^a  

^a UNIVERSITY OF WESTERN ONTARIO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ADAPTIVE BEHAVIOR; ARTICLE; ARTIFICIAL VENTILATION; CAREGIVER; CHRONIC DISEASE; COMMUNICATION AID; DAILY LIFE ACTIVITY; GENETIC SCREENING; HUMAN; NEUROMUSCULAR DISEASE; PALLIATIVE THERAPY; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SOCIAL SUPPORT;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CHRONIC DISEASE; COMMUNICATION AIDS FOR DISABLED; GENETIC TESTING; HUMANS; NEUROMUSCULAR DISEASES; PALLIATIVE CARE; QUALITATIVE RESEARCH; RESPIRATION, ARTIFICIAL; SOCIAL SUPPORT;

EID: 80053636278     PISSN: 08880395     EISSN: None     Source Type: Journal    
DOI: 10.1097/JNN.0b013e3182135ac9     Document Type: Article

References (67)

1. Antle, B. J., Mills, W., Steele, C., Kalnins, I., & Rossen, B. (2008). An exploratory study of parents' approaches to health promotion in families of adolescents with physical disabilities. Child: Care, Health, and Development, 34(2), 185-193. (Pubitemid 351228112)
2. Beck, C. T. (1997). Humor in nursing practice: A phenomenological study. International Journal of Nursing Studies, 34(5), 346-352. (Pubitemid 127382760)
3. Beresford, B. A., & Sloper, P. (2003). Chronically ill adolescents' experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health, 33, 172-179. (Pubitemid 36999826)
4. Bolmsjo, I. (2001). Existential issues in palliative care: Interviews of patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 4(4), 499-505. (Pubitemid 34027662)
5. Bolmsjo, I., & Hermeren, G. (2001). Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: Comparing needs. Journal of Palliative Care, 17(4), 236-240. (Pubitemid 33712553)
6. Bostrom, K., & Ahlstrom, G. (2004). Living with a chronic deteriorating disease: The trajectory with muscular dystrophy over ten years. Disability and Rehabilitation, 26(23), 1388-1398. (Pubitemid 39585812)
7. Bostrom, K., & Ahlstrom, G. (2005). Living with a hereditary disease: Persons with muscular dystrophy and their next of kin. American Journal of Medical Genetics, 136(1), 17-24. (Pubitemid 40934223)
8. Bostrom, K., Ahlstrom, G., & Sunvisson, H. (2006). Being the next of kin of an adult person with muscular dystrophy. Clinical Nursing Research, 15(2), 86Y104; discussion 105-106. (Pubitemid 43494290)
9. Bregman, A. M. (1980). Living with progressive childhood illness: Parental management of neuromuscular disease. Social Work in Health Care, 5(4), 387-408. (Pubitemid 12022099)
10. Bromberg, M. B., Forshew, D. A., Iaderosa, S., & McDonald, E. R. (1996). Ventilatory dependency in ALS: Management, disease progression, and issues of coping. Journal of Neurologic Rehabilitation, 10(3), 195-216.
11. Brooks, D., King, A., Tonack, M., Simson, H., Gould, M., & Goldstein, R. (2004). User perspectives on issues that influence the quality of daily life of ventilator-assisted individuals with neuromuscular disorders. Canadian Respiratory Journal, 11(8), 547-554. (Pubitemid 40089891)
12. Brown, J., & Addington-Hall, J. (2008). How people with motor neurone disease talk about living with their illness: A narrative study. Journal of Advanced Nursing, 62(2), 200-208.
13. Burchardi, N., Rauprich, O., Hecht, M., Beck, M., & Vollmann, J. (2005). Discussing living wills. A qualitative study of a German sample of neurologists and ALS patients. Journal of Neurological Sciences, 237(1Y2), 67-74. (Pubitemid 41384016)
14. Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: The moral experience of families with ventilatorassisted children at home. Pediatrics, 117(1), e48-e60. (Pubitemid 46061088)
15. Dawson, S., & Kristjanson, L. J. (2003). Mapping the journey: Family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. Journal of Palliative Care, 19(1), 36-42. (Pubitemid 37140480)
16. Eagle, M., Baudouin, S. V., Chandler, C., Giddings, D. R., Bullock, R., & Bushby, K. (2002). Survival in Duchenne muscular dystrophy: Improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscular Disorders, 12(10), 926-929. (Pubitemid 35408673)
17. Emery, A. E., Watt, M. S., & Clack, E. R. (1972). The effects of genetic counselling in Duchenne muscular dystrophy. Clinical Genetics, 3(2), 147-150.
18. Evans, S., Neophytou, C., de Souza, L., & Frank, A. O. (2007). Young people's experiences using electric powered indoorYoutdoor wheelchairs (EPIOCs): Potential for enhancing users' development? Disability and Rehabilitation, 29(16), 1281-1294. (Pubitemid 47189921)
19. Fanos, J. H., Gelinas, D. F., Foster, R. S., Postone, N., & Miller, R. G. (2008). Hope in palliative care: From narcissism to self-transcendence in amyotrophic lateral sclerosis. Journal of Palliative Medicine, 11(3), 470-475. (Pubitemid 351440544)
20. Fanos, J. H., Gelinas, D. F., & Miller, R. G. (2004). ''You have shown me my end'': Attitudes toward presymptomatic testing for familial amyotrophic lateral sclerosis. American Journal of Medical Genetics, 129A(3), 248-253. (Pubitemid 39166189)
21. Firth, M. A. (1983). Diagnosis of Duchenne muscular dystrophy: Experiences of parents of sufferers. British Medical Journal (Clinical Research Edition), 286(6366), 700-701. (Pubitemid 13147667)
22. Firth, M., Gardner-Medwin, D., Hosking, G., & Wilkinson, E. (1983). Interviews with parents of boys suffering from Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 25(4), 466-471. (Pubitemid 13030889)
23. Firth, M. A., & Wilkinson, E. J. (1983). Screening the newborn for Duchenne muscular dystrophy: Parents' views. British Medical Journal (Clinical Research Edition), 286(6382), 1933-1934. (Pubitemid 13106257)
24. Fitzpatrick, C., & Barry, C. (1990). Cultural differences in family communication about Duchenne muscular dystrophy. Developmental Medicine and Child Neurology, 32(11), 967-973. (Pubitemid 20340888)
25. Foley, G., O'Mahony, P., & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis, 8(3), 164-169. (Pubitemid 46887914)
26. Forsberg, A., Ahlstrom, G., & Holmqvist, L. W. (2008). Falling ill with Guillain-Barre syndrome: Patients' experiences during the initial phase. Scandinavian Journal of Caring Sciences, 22(2), 220-226.
27. Gelinas, D. F., O'Connor, P., & Miller, R. G. (1998). Quality of life for ventilator-dependent ALS patients and their caregivers. Journal of Neurological Sciences, 160(Suppl. 1), S134-S136. (Pubitemid 28522532)
28. Gibson, B. E., Young, N. L., Upshur, R. E., & McKeever, P. (2007). Men on the margin: A Bourdieusian examination of living into adulthood with muscular dystrophy. Social Science and Medicine, 65(3), 505-517. (Pubitemid 47017525)
29. Gibson, B. E., Zitzelsberger, H., & McKeever, P. (2009). ''Futureless persons'': Shifting life expectancies and the vicissitudes of progressive illness. Sociology of Health and Illness, 31(4), 554-568.
30. Gravelle, A. M. (1997). Caring for a child with a progressive illness during the complex chronic phase: Parents' experience of facing adversity. Journal of Advanced Nursing, (25), 738-745. (Pubitemid 127686902)
31. Greenhalgh, T., & Taylor, R. (1997). Papers that go beyond numbers (qualitative research). British Medical Journal, 315(7110), 740-743. (Pubitemid 27405832)
32. Gysels, M., Shipman, C., & Higginson, I. J. (2008). ''I will do it if it will help others'': Motivations among patients taking part in qualitative studies in palliative care. Journal of Pain and Symptom Management, 35(4), 347-355.
33. Harrison, J. (1993). Spirituality and nursing practice. Journal of Clinical Nursing, 2(4), 211-217.
34. Heaton, J., Noyes, J., Sloper, P., & Shah, R. (2005). Families' experiences of caring for technology-dependent children: A temporal perspective. Health and Social Care in the Community, 13(5), 441-450. (Pubitemid 41137422)
35. Herz, H., McKinnon, P. M., & Butow, P. N. (2006). Proof of love and other themes: A qualitative exploration of the experience of caring for people with motor neurone disease. Progress in Palliative Care, 14(5), 209-214. (Pubitemid 47045800)
36. Hirano, Y.M., Yamazaki, Y., Shimizu, J., Togari, T., & Bryce, T. J. (2006). Ventilator dependence and expressions of need: A study of patients with amyotrophic lateral sclerosis in Japan. Social Science and Medicine, 62(6), 1403-1413. (Pubitemid 43197824)
37. Hugel, H., Grundy, N., Rigby, S., & Young, C. A. (2006). How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotrophic Lateral Sclerosis, 7(3), 161-166. (Pubitemid 44644570)
38. Hughes, R. A., Sinha, A., Higginson, I., Down, K., & Leigh, P. N. (2005). Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health and Social Care in the Community, 13(1), 64-74. (Pubitemid 40131804)
39. Ingadottir, T. S.,&Jonsdottir, H. (2006). Technological dependency-the experience of using home ventilators and long-term oxygen therapy: Patients' and families' perspective. Scandinavian Journal of Caring Sciences, 20(1), 18-25.
40. King, S. J., Duke, M. M., & O'Connor, B. A. (2009). Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): Decision-making about ''ongoing change and adaptation.'' Journal of Clinical Nursing, 18(5), 745-754.
41. Krause-Bachand, J., & Koopman, W. (2008). Living with oculopharyngeal muscular dystrophy: A phenomenological study. Canadian Journal of Neuroscience Nursing, 30(1), 35-39.
42. Lamb, C., & Peden, A. (2008). Understanding the experience of living with spinal muscular atrophy: A qualitative description. Journal of Neuroscience Nursing, 40(4), 250-256.
43. Mah, J. K., Thannhauser, J. E., McNeil, D. A., & Dewey, D. (2008). Being the lifeline: The parent experience of caring for a child with neuromuscular disease on home mechanical ventilation. Neuromuscular Disorders, 18(12), 983-988.
44. McCabe, M. P., Roberts, C., & Firth, L. (2008a). Satisfaction with services among people with progressive neurological illnesses and their carers in Australia. Nursing and Health Sciences, 10(3), 209-215.
45. McCabe, M. P., Roberts, C., & Firth, L. (2008b). Work and recreational changes among people with neurological illness and their caregivers. Disability and Rehabilitation, 30(8), 600-610.
46. McNaughton, D., Light, J., & Groszyk, L. (2001). ''Don't give up'': Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication, 17, 179-195.
47. Moss, A. H., Oppenheimer, E. A., Casey, P., Cazzolli, P. A., Roos, R. P., Stocking, C. B., et al. (1996). Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation. Chest, 110(1), 249-255. (Pubitemid 26249330)
48. Murphy, J. (2004). ''I prefer contact this close'': Perceptions of AAC by people with motor neurone disease and their communication partners. Augmentive and Alternative Communication, 20(4), 259-271. (Pubitemid 40072077)
49. Muscular Dystrophy Association. (2010). Retrieved fromhttp://www.mda.org/
50. Muscular Dystrophy Canada. (2010). Retrieved from http:// www.muscle.ca/
51. Natterlund, B., Sjoden, P. O., & Ahlstrom, G. (2001). The illness experience of adult persons with muscular dystrophy. Disability and Rehabilitation, 23(17), 788-798. (Pubitemid 33120901)
52. Neudert, C., Oliver, D., Wasner, M., & Borasio, G. D. (2001). The course of the terminal phase in patients with amyotrophic lateral sclerosis. Journal of Neurology, 248(7), 612-616. (Pubitemid 32700299)
53. O'Brien, M. R. (2004). Information-seeking behaviour among people with motor neurone disease. British Journal of Nursing, 13(16), 964-968.
54. Parker, D., Maddocks, I., & Stern, L. M. (1999). The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy. Journal of Paediatrics and Child Health, 35(3), 245-250. (Pubitemid 29282271)
55. Parsons, E. P., & Clarke, A. J. (1993). Genetic risk: women's understanding of carrier risks in Duchenne muscular dystrophy. Journal of Medical Genetics, 30(7), 562-566. (Pubitemid 23225181)
56. Peri, T-A. C. (1995). Promoting spirituality in acquired immunodeficiency syndrome: A nursing intervention. Holistic Nursing Practice, 10(1), 68-76.
57. Ray, R. A., & Street, A. F. (2006). Caregiver bodywork: Family members' experiences of caring for a person with motor neurone disease. Journal of Advanced Nursing, 56(1), 35-43. (Pubitemid 44395176)
58. Simon, J. M. (1988). Humour and the older adult: Implications for nursing. Journal of Advanced Nursing, 13(4), 441-446.
59. Soutter, J., Hamilton, N., Russell, P., Russell, C., Bushby, K., Sloper, P., et al. (2004). The golden freeway: A preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families. Health and Social Care in the Community, 12(1), 25-33. (Pubitemid 38882456)
60. Stewart, M., Davidson, K., Meade, D., Hirth, A., &Weld-Viscount, P. (2001). Group support for couples with a cardiac condition. Journal of Advanced Nursing, 33(2), 190-199. (Pubitemid 33614439)
61. Strong, K., & Sandoval, J. (1999). Mainstreaming children with a neuromuscular disease: A map of concerns. Exceptional Children, 65(3), 353-366.
62. Ussher, J., Kirsten, L., Butow, P., & Sandoval, M. (2006). What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Social Science and Medicine, 62(10), 2565-2576.
63. Webb, C. L. (2005). Parents' perspectives on coping with Duchenne muscular dystrophy. Child: Care, Health, and Development, 31(4), 385-396. (Pubitemid 40873214)
64. Wenneberg, S., Gunnarsson, L. G., & Ahlstrom, G. (2004). Using a novel exercise programme for patients with muscular dystrophy: Part I. A qualitative study. Disability and Rehabilitation, 26(10), 586-594. (Pubitemid 38771875)
65. Williams, J. K., & Schutte, D. L. (1997). Benefits and burdens of genetic carrier identification. Western Journal of Nursing Research, 19(1), 71-81. (Pubitemid 127455468)
66. Young, J. M., Marshall, C. L., & Anderson, E. J. (1994). Amyotrophic lateral sclerosis patients' perspectives on use of mechanical ventilation. Health and Social Work, 19(4), 253-260.
67. Young, J. M., & McNicoll, P. (1998). Against all odds: Positive life experiences of people with advanced amyotrophic lateral sclerosis. Health and Social Work, 23(1), 35-43. (Pubitemid 128452607)