Patients experiences of maintaining mental well-being and hope within motor neuron disease: A thematic synthesis

Frontiers in Psychology

Volumn 6, Issue MAY, 2015, Pages

  Soundy, Andrew ^a   Condon, Nicola ^b  

^a UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^b UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Adjustment; Experiences; Hope; Motor neuron disease; Qualitative; Review

Indexed keywords

EID: 84930936522     PISSN: None     EISSN: 16641078     Source Type: Journal    
DOI: 10.3389/fpsyg.2015.00606     Document Type: Review

References (72)

1. Abdulla, S., Vielhaber, S., Machts, J., Heinze, H.-J., Dengler, R., and Petri, S. (2014). Information needs and information-seeking preferences of ALS patients and their carers. Amyotroph. Lateral Scler. Frontotemporal Degeneration 15, 7-8. doi: 10.3109/21678421.2014.932385
2. Achi, E. Y., and Rudnicki, S. A. (2012). ALS and frontotemporal dysfunction: a review. Neurol. Res. Int. 806306, 1-9. doi: 10.1155/2012/806306
3. Allen-Collinson, J., and Pavey, A. (2014). Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease. Sociol. Health Illn. 36, 793-806. doi: 10.1111/1467-9566.12104
4. Arai, L., Britten, N., Popay, J., Roberts, H., Petticrew, M., Rodgers, M., et al. (2007). Testing methodological developments in the conduct of narrative synthesis: a demonstration review of research on the implementation of smoke alarm interventions. Evid. Policy 3, 361-383. doi: 10.1332/174426407781738029
5. Averill, A. J., Kasarskis, E. J., and Segerstrom, S. C. (2007). Psychological health in patients with amyotrophic lateral sclerosis. Amyotroph. Lateral Scler. 8, 243-254. doi: 10.1080/17482960701374643
6. Bede, P., Oliver, D., Stodart, J., van den Berg, L., Brannagáin, Ò., Brannagáin, S. Z., et al. (2011). Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J. Neurol. Neurosurg. Psychiatry 82, 413-418. doi: 10.1136/jnnp.2010.232637
7. Blackhall, L. J. (2012). Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead. Muscle Nerve 45, 311-318. doi: 10.1002/mus.22305
8. Brott, T., Hocking, C., and Paddy, A. (2006). Occupational disruption: living with motor neurone disease. Br. J. Occup. Ther. 70, 24-31. doi: 10.1177/030802260707000107
9. Brown, J., and Addington-Hall, J. (2007). How people with motor neurone disease talk about living with their illness: a narrative study. J. Adv. Nurs. 62, 200-208. doi: 10.1111/j.1365-2648.2007.04588.x
10. Brown, J. B. (2003). User, carer and professional experiences of care in motor neurone disease. Prim. Health Care Res. Dev. 4, 207-217. doi: 10.1191/1463423603pc151oa
11. Centers, L. C. (2001). Beyond denial and despair: ALS and our heroic potential for hope. J. Palliat. Care 17, 259-264.
12. Cobb, A. K., and Hamera, E. (1986). Illness experience in a chronic disease - ALS. Soc. Sci. Med. 23, 641-650. doi: 10.1016/0277-9536(86)90111-5
13. Compas, B. E., Jaser, S. S., Dunn, M. J., and Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annu. Rev. Clin. Psychol. 8, 455-480. doi: 10.1146/annurev-clinpsy-032511-143108
14. Cooke, A., Smith, D., and Booth, A. (2012). Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual. Health Res. 22, 1435-1443. doi: 10.1177/1049732312452938
15. Cox, D. L. (1992). Perspectives of motor neurone disease. Clin. Rehabil. 6, 333-339. doi: 10.1177/026921559200600409
16. Dixon-Woods, M., Sutton, A., Shaw, R., Miller, T., Smith, J., Young, B., et al. (2007). Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J. Health Serv. Res. Policy 12, 42-47. doi: 10.1258/135581907779497486
17. Fanos, J. H., Gelinas, D. F., Foster, R. S., Postone, N., and Miller, R. G. (2008). Hope in palliative care: from narcissism to self-trandendence in Amyotrophic lateral sclerosis. J. Palliat. Care 11, 470-475. doi: 10.1089/jpm.2007.0098
18. Foley, G., O'Mahony, P., and Hardiman, O. (2007). Perceptions of quality of life in people with ALS: effects of coping and health care. Amyotroph. Lateral Scler. 8, 164-169. doi: 10.1080/17482960601164532
19. Foley, G., Timonen, V., and Hardiman, O. (2012). Experiences of services as a key outcome in Amyotrophic lateral Sclerosis (ALS)care: the case for a better understanding of patient experiences. Am. J. Hosp. Palliat. Care 29, 362-367. doi: 10.1177/1049909111423774
20. Foley, G., Timonen, V., and Hardiman, O. (2014a). Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc. Sci. Med. 101, 113-119. doi: 10.1016/j.socscimed.2013.11.003
21. Foley, G., Timonen, V., and Hardiman, O. (2014b). Understanding psycho-social processes underpinning engagement with services in motor neurone disease: a Qualitative study. Palliat. Med. 28, 318-325. doi: 10.1177/0269216313512013
22. Gibbons, C. J., Thornton, E. W., and Young, C. A. (2013). The patient experience of fatigue in motor neurone disease. Front. Psychol. 4:788. doi: 10.3389/fpsyg.2013.00788
23. Goldstein, L. H., Adamson, M., Jeffrey, L., Down, K., Barby, T., Wilson, C., et al. (1998). The psychological impact of MND on patients and carers. J. Neurol. Sci. 160, S114-S121. doi: 10.1016/S0022-510X(98)00209-3
24. Gysels, M. H., and Higginson, I. J. (2011). The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat. Care 10:15. doi: 10.1186/1472-684X-10-15
25. Hartley, S., McArthur, M., Coenen, M., Cabello, M., Covelli, V., Roszczynska-Michta, J., et al. (2014). Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants. PLoS ONE 9:e96890. doi: 10.1371/journal.pone.0096890
26. Hogden, A., Greenfield, D., Nugus, P., and Kirenan, M. C. (2012). What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Prefer. Adherence 6, 829-838. doi: 10.2147/PPA.S37851
27. Hogg, K. E., Goldstein, L. H., and Leigh, P. N. (1994). The psychological impact of motor neurone disease. Psychol. Med. 24, 625-632. doi: 10.1017/S003329170002777X
28. Hu, T., Zhang, D., Wang, J., Mistry, R., Ran, G., and Wang, X. (2014). Relationship between emotiona regulation and mental health: a meta-analysis review. Psychol. Rep. 114, 341-362. doi: 10.2466/03.20.PR0.114k22w4
29. Hugel, H., Grundy, N., Rigby, S., and Young, C. A. (2006). How does current care practice influence the experience of a new diagnosis of motor neurone disease? A qualitative study of current guidlines-based practice. Amyotroph. Lateral Scler. 7, 161-166. doi: 10.1080/14660820600601051
30. Hughes, R. A., Sinha, A., Higginson, I., Down, K., and Leigh, P. N. (2005). Living with motor neurone disease: lives, experiences of services and suggestions for change. Health Soc. Care Community 13, 64-74. doi: 10.1111/j.1365-2524.2005.00530.x
31. King, S. J., Duke, M. M., and O'Connor, B. A. (2009). Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about 'ongoing change and adaptation'. J. Clin. Nurs. 18, 745-754. doi: 10.1111/j.1365-2702.2008.02671.x
32. Kirenan, M. C., Vucic, S., Cheah, B. C., Turner, M. R., Eisen, A., Hardiman, O., et al. (2011). Amyotrophic lateral sclerosis. Lancet 377, 942-955. doi: 10.1016/S0140-6736(10)61156-7
33. Lillo, P., and Hodges, J. R. (2009). Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders. J. Clin. Neurosci. 16, 1131-1135. doi: 10.1016/j.jocn.2009.03.005
34. Locock, L., and Brown, J. B. (2010). 'All in the same boad'? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND). Soc. Sci. Med. 71, 1498-1505. doi: 10.1016/j.socscimed.2010.06.043
35. Locock, L., Mazanderani, F., and Powell, J. (2012). Metaphoric language and the articulation of emotions by people affected by motor. Chronic Illn. 8, 201-213. doi: 10.1177/1742395312443390
36. Locock, L., Ziebland, S., and Dumelow, C. (2009). Biographical disruption, abruption and repair in the context of Motor Neurone Disease. Sociol. Health Illn. 31, 1043-1058. doi: 10.1111/j.1467-9566.2009.01176.x
37. Logroscino, G., Traynor, B. J., Hardiman, O., Chiò, A., Mitchell, D., Swingler, R. J., et al. (2009). Incidence of amyotrophic lateral sclerosis in Europe. J. Neurol. Neurosurg. Psychiatry, 81, 385-390. doi: 10.1136/jnnp.2009.183525
38. Lulé, D., Pauli, S., Altintas, E., Singer, U., Merk, T., Uttner, I., et al. (2012). Emotional adjustment in amyotrophic lateral sclerosis (ALS). J. Neurol. 259, 334-341. doi: 10.1007/s00415-011-6191-x
39. McCabe, M. P., and O'Connor, E. J. (2012). Why are some people with neurological illness more resilient than others? Psychol. Health Med. 17, 17-34. doi: 10.1080/13548506.2011.564189
40. Mckelvey, M., Evans, D. L., Kawai, N., and Beukelman, D. (2012). Communications styles of perosns with ALS as recounted by Surviving Partners. Augment. Altern. Commun. 28, 232-242. doi: 10.3109/07434618.2012.737023
41. McLeod, J. E., and Clarke, D. M. (2007). A review of psychosocial aspects of motor neurone disease. J. Neurol. Sci. 258, 4-10. doi: 10.1016/j.jns.2007.03.001
42. Mehta, P., Antao, V., Kaye, W., Sanchez, M., Williamson, D., Bryan, L., et al. (2014). Prevalence of amyotrophic lateral sclerosis - United States, 2010-2011. MMWR Surveill. Summ. 63, 1-14.
43. Mistry, K., and Simpson, J. (2013). Exploring the transitional process from receiving a diagnosis to living with motor neurone disease. Psychol. Health, 28, 939-953. doi: 10.1080/08870446.2013.770513
44. Montel, S., Albertini, L., and Spitz, E. (2012). Coping strategies as related to medical and demographic data in amyotrophic lateral sclerosis. Acta Neurol. Scand. 125, 136-141. doi: 10.1111/j.1600-0404.2011.01513.x
45. Murphy, J. (2004). "I prefer contact this close": perceptions of AAC by people with motor neurone disease and their communication partners. Augment. Altern. Commun. 20, 259-271. doi: 10.1080/07434610400005663
46. National Health Service Scotland. (2014). Mental Health Improvement, Background and Policy Context. Avaliable online at: http://www.healthscotland.com/mental-health-background.aspx
47. Neudert, C., Wasner, M., and Borasio, G. D. (2001). Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J. Neurol. Sci. 191, 103-109. doi: 10.1016/S0022-510X(01)00612-8
48. Nowlan, J. S., Wuthrich, V. M., and Rapee, R. M. (2014). Postive reapprasial in older adults: a systematic literature review. Aging Ment. Health 9, 1-10.
49. O'Brien, M. R., Murphy, P. N., Mitchell, J. D., and Jack, B. A. (2012). Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused? Palliat. Med. 26, 123-131. doi: 10.1177/0269216311398697
50. O'Brien, M. R., Whitehead, B., Jack, B. A., and Mitchell, J. D. (2011). from sympton onset to a diagnosis of amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): experience of people with ALS/MND and family carers - a qualitative studyy. Amyotroph. Lateral Scler. 12, 97-104. doi: 10.3109/17482968.2010.546414
51. Ozanne, A. O., Graneheim, U. H., Persson, L., and Strang, S. (2011). Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin. J. Clin. Nurs. 21, 1364-1373. doi: 10.1111/j.1365-2702.2011.03809.x
52. Pavey, A., Allen-Collinson, J., and Pavey, T. (2013). The lived experience of diagnosis delivery in motor neurone disease: a sociolgoical-phenmenological study. Sociol. Res. Online 18, 1-12. doi: 10.5153/sro.2927
53. Plahuta, J. M., McCulloch, B. J., Kasarskis, E. J., Ross, M. A., Walter, R. A., and McDonald, E. R. (2002). Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. Soc. Sci. Med. 5, 2131-2140. doi: 10.1016/S0277-9536(01)00356-2
54. Popay, J., Roberts, H., Sowden, A., Petticrew, M., Arai, L., Britten, N., et al. (2007). Guidance on the Conduct of Narrative Synthesis in Systematic Reviews: A Product from the ESRC Methods Programme, ed E. M. Programme (Swindon: Economics and Social Research Council), 1-92. Available online at: http://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/NS_Synthesis_Guidance:v1.pdf
55. Pope, C., Mays, N., and Popay, J. (2007). Synthesizing Qualitative and Quantitative Health Research: A Guide to Methods. Berkshire: Open University Press.
56. Preston, H., Fineberg, I. C., Callagher, P., and Mitchell, D. J. (2011). The preferred priorities for care document in motor neurone disease: views of bereaved relatives and carers. Palliat. Med. 26, 132-138. doi: 10.1177/0269216311399664
57. Raaphorst, J., Beeldman, E., De Visser, M., De Hann, R. J., and Schmand, B. (2012). A systematic review of behavioural changes in motor neuron disease. Amyotroph. Lateral Scler. 13, 493-501. doi: 10.3109/17482968.2012.656652
58. Ray, R. A., and Street, A. F. (2005). Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease. Health Soc. Care Community 13, 542-552. doi: 10.1111/j.1365-2524.2005.00586.x
59. Roger, K., Wetzel, M., Hutchinson, S., Packer, T., and Versnel, J. (2014). "How can I still be me?": strategies to maintain a sense of self in the context of a neurological condition. Int. J. Qual. Stud. Health Well-being, 9, 1-10. doi: 10.3402/qhw.v9.23534
60. Snyder, C. R., Irving, L. M., and Anderson, J. R. (1991). "Hope and Health," in Handbook of Social and Clinical Psychology: The Health Perspective, eds D. R. Forsyth and C. R. Synder (Elmsford, NY: Pergamon Press), 285-305.
61. Soundy, A., Liles, C., Stubbs, B., and Roskell, C. (2014a). Identifying a framework for hope in order to establish the importance of generalised hopes for individuals who have suffered a stroke. Adv. Med. 2014:471874. doi: 10.1155/2014/471874
62. Soundy, A., Sayers, J., Stubbs, B., and Roskell, C. (2014b). Don't take my hope away: understanding the patient's hope in neurological rehabilitation. Int. J. Ther. Rehabil. 21, 257-258. doi: 10.12968/ijtr.2014.21.6.257
63. Soundy, A., Smith, B., Dawes, H., Pall, H., Gimbrere, K., and Ramsay, J. (2013). Patients expression of hope and illness narratives in three neurological conditions: a meta-ethnography. Health Psychol. Rev. 7, 177-201. doi: 10.1080/17437199.2011.568856
64. Soundy, A., Stubbs, B., Freeman, P., Coffee, P., and Roskell, C. (2014c). Factors influencing patients' hope in stroke and spinal cord injury: a narrative review. Int. J. Ther. Rehabil. 21, 210-218. doi: 10.12968/ijtr.2014.21.5.210
65. Soundy, A., Stubbs, B., and Roskell, C. (2014d). The experience of Parkinson's Disease: a systematic review and meta-ethnography. Sci. World J. 613592, 1-19. doi: 10.1155/2014/613592
66. Tedeschi, R. G., and Calhoun, L. G. (2004). Target article: post-traumatic growth: conceptual foundations and empirical evidence. Psychol. Inq. 15, 1-18. doi: 10.1207/s15327965pli1501_01
67. Thomas, J., and Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. MBC Med. Res. Methodol. 8:45. doi: 10.1186/1471-2288-8-45
68. Tong, A., Sainsbury, P., and Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 19, 349-357. doi: 10.1093/intqhc/mzm042
69. Vitale, A., and Genge, A. (2006). Codman Award 2006: the experience of hope in ALS patients. Axon 28, 27-35.
70. Weed, M. (2008). A potential method for the interpretive synthesis of qualitative research: issues in the development of meta-interpretation. Int. J. Soc. Res. Methodol. 11, 13-28. doi: 10.1080/13645570701401222
71. Whitehead, B., O'Brien, M. R., Jack, B. A., and Mitchell, D. (2012). Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat. Med. 26, 368-378. doi: 10.1177/0269216311410900
72. Young, J. M., and McNicoll, P. (1998). Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health Soc. Work 23, 35-43. doi: 10.1093/hsw/23.1.35