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Articles

Exploring the transitional process from receiving a diagnosis to living with motor neurone disease

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Pages 939-953 | Received 03 Nov 2012, Accepted 22 Jan 2013, Published online: 06 Mar 2013

References

  • Ahmad , M. M. 2010 . Validation of the cognitive appraisal health scale with Jordanian patients . Nursing and Health Sciences , 12 : 74 – 79 . doi:10.1111/j.1442-2018.2009.00492.x
  • Andrykowski , M. , Brady , M. and Hunt , J. 1993 . Positive psychological adjustment in potential bone marrow transplant recipients: Cancer as a psychosocial transition . Psycho-Oncology , 2 : 261 – 276 .
  • Bergner , M. , Bobbitt , R. A. , Kressel , S. , Pollard , W. E. , Gilson , B. S. and Morris , J. R. 1976 . The sickness impact profile: Conceptual formulation and methodology for the development of a health status measure . International Journal of Health Services , 6 : 393 – 415 .
  • Boeve , B. F. 2007 . Links between frontotemporal lobar degeneration, corticobasal degeneration, progressive supranuclear palsy, and amyotrophic lateral sclerosis . Alzheimer Disease and Associated Disorders , 21 : S31 – S38 . doi:10.1097/WAD.0b013e31815bf454
  • Bova , C. 2001 . Adjustment to chronic illness among HIV-infected women . Journal of Nursing Scholarship , 33 : 217 – 224 . doi:10.1111/j.1547-5069.2001.00217.x
  • Brown , J. B. 2003 . User, carer and professional experiences of care in motor neurone disease . Primary Health Care Research and Development , 4 : 207 – 217 .
  • Brown , J. and Addington-Hall , J. 2008 . How people with motor neurone disease talk about living with their illness: A narrative study . Journal of Advanced Nursing , 62 : 200 – 208 . doi:10.1111/j.1365-2648.2007.04588.x
  • Bury , M. 1982 . Chronic illness as biographical disruption . Sociology of Health and Illness , 4 : 167 – 182 .
  • Carroll-Thomas , S. 1995 . Communication changes and challenges in ALS/MND . Journal of Speech-Language Pathology & Audiology , 19 : 281 – 282 .
  • Cayoun , B. A. 2011 . Mindfulness-integrated CBT: Principles and practice , Chichester : Wiley-Blackwell .
  • Charmaz , K. 1983 . Loss of self: A fundamental form of suffering in the chronically ill . Sociology of Heath and Illness , 5 : 168 – 169 .
  • Charmaz , K. 1995 . The body, identity, and self: Adapting to impairment . The Sociological Quarterly , 36 : 657 – 680 .
  • de Ridder , D. , Geenen , R. , Kuijer , R. and van Middendorp , H. 2008 . Psychological adjustment to chronic disease . Lancet , 372 : 246 – 255 . doi:10.1016/S0140-6736(08)61078-8
  • Earll , L. , Johnston , M. and Mitchell , E. 1993 . Coping with motor neurone disease – An analysis using self-regulation theory . Palliative Medicine , 7 : 21 – 30 . doi:10.1177/026921639300700405
  • Eccles , F. J. , Murray , C. M. and Simpson , J. 2011 . Perceptions of cause and control in people with Parkinson’s disease . Disability and Rehabilitation , 33 : 1409 – 1420 .
  • Eccles , F. J. and Simpson , J. 2011 . A review of the demographic, clinical and psychosocial correlates of perceived control in three chronic motor illnesses . Disability and Rehabilitation , 33 : 1065 – 1088 . doi:10.3109/09638288.2010.525287
  • Engström , A. and Söderberg , S. 2007 . Receiving power through confirmation: The meaning of close relatives for people who have been critically ill . Journal of Advanced Nursing , 59 : 569 – 576 . doi:10.1111/j.1365-2648.2007.04336.x
  • Fitzpatrick , L. , Simpson , J. and Smith , A. 2010 . A qualitative analysis of mindfulness-based cognitive therapy (MBCT) in Parkinson’s disease . Psychology and Psychotherapy: Theory, Research and Practice , 83 : 179 – 192 . doi:10.1348/147608309X471514
  • Giske , T. and Gjengedal , E. 2006 . ‘Preparative waiting’ and coping theory with patients going through gastric diagnosis . Journal of Advanced Nursing , 57 : 87 – 94 . doi:10.1111/j.13652648.2006.04082.x
  • Habermann , B. 1999 . Continuity challenges of Parkinson’s disease in middle life . Journal of Neuroscience Nursing , 31 : 200 – 207 .
  • Hayes, S. C. (2010). Acceptance and commitment therapy and the new behavior therapies: Mindfulness, acceptance and relationship. In S. C. Hayes, V. M. Follette, & M. M. Linehan (Eds.), Mindfulness and acceptance: Expanding the cognitive-behavioural tradition (pp. 1–29). London: The Guilford Press.
  • Hugel , H. , Pih , N. , Dougan , C. P. , Rigby , S. and Young , C. A. 2010 . Identifying poor adaptation to a new diagnosis of motor neurone disease: A pilot study into the value of an early patient-led interview . Amyotrophic Lateral Sclerosis , 11 : 104 – 109 . doi:10.3109/17482960902829205
  • Irvine , H. , Davidson , C. , Hoy , K. and Lowe-Strong , A. 2009 . Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition . Disability and Rehabilitation , 31 : 599 – 606 . doi:10.1080/09638280802243286
  • Irving , S. K. 2001 . Waiting: Concept analysis . Nursing Diagnosis , 12 : 128 – 136 . doi:10.1111/j.1744-618X.2001.tb00450.x
  • Jacoby , A. 1994 . Felt versus enacted stigma: A concept revisited. Evidence from a study of people with epilepsy in remission . Social Science and Medicine , 38 : 269 – 274 . doi:10.1016/0277-9536(94)90396-4
  • Janoff-Bulman , R. 1989 . Assumptive worlds and the stress of traumatic events: Applications of the schema construct . Social Cognition , 7 : 113 – 136 .
  • 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’ . Journal of Clinical Nursing , 18 : 745 – 754 . doi:10.1111/j.1365-2702.2008.02671
  • Lazarus , R. and Folkman , S. 1984 . Stress, appraisal, and coping , New York , NY : Springer .
  • Leventhal , H. , Meyer , D. and Nerenz , D. 1980 . “ The common sense representation of illness danger ” . In Contributions to medical psychology , Edited by: Rachman , S. Vol. 2 , 17 – 30 . New York , NY : Pergamon Press .
  • Locock , L. and Brown , J. 2010 . ‘All in the same boat’? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND) . Social Science and Medicine , 71 : 1498 – 1505 . doi:10.1016/j.socscimed.2010.06.043
  • Locock , L. , Zieband , S. and Dumelow , C. 2009 . Biographical disruption, abruption and repair in the context of motor neurone disease . Sociology of Health and Illness , 31 : 1043 – 1058 . doi:10.1111/j.1467-9566.2009.01176.x
  • Lyons , K. D. and Tickle-Degnen , L. 2003 . The dramaturgical challenges of Parkinson’s disease . Occupational Therapy Journal of Research , 23 : 27 – 34 .
  • Maciejewski , P. K. , Zhang , B. , Block , S. D. and Prigerson , H. G. 2009 . An empirical examination of the stage theory of grief . The Journal of the American Medical Association , 297 : 716 – 723 . doi:10.1001/jama.297.7.716
  • MacKenzie , M. J. , Carlson , L. E. , Munoz , M. and Speca , M. 2007 . A qualitative study of self-perceived effects of mindfulness-based stress reduction (MBSR) in psychosocial oncology setting . Stress and Health , 23 : 59 – 69 . doi:10.1002/smi.1120
  • McLeod , J. E. and Clarke , D. M. 2007 . A review of psychosocial aspects of motor neurone disease . Journal of the Neurological Sciences , 258 : 4 – 10 . doi:10.1016/j.jns.2007.03.001
  • Moore , J. M. , Moore , P. B. and Shaw , P. S. 1998 . Mood disturbance in motor neurone disease . Journal of the Neurological Sciences , 160 : S53 – S56 .
  • Murphy , J. 2004 . ‘I prefer contact this close’: Perceptions of AAC by people with motor neurone disease and their communication partners . Augmentative and Alternative Communication , 20 : 259 – 271 . doi:10.1080/07434610400005663
  • Rabkin , J. G. , Albert , S. M. , Del Bene , M. L. , O’Sullivan , I. , Tider , T. , Rowland , L. P. and Mitsumoto , H. 2005 . Prevalence of depressive disorders and change over time in late stage ALS . Neurology , 65 : 62 – 67 . doi:10.1212/01.wnl.0000167187.14501.0c
  • Reeve , D. 2006 . “ Towards a psychology of disability: The emotional effects of living in a disabling society ” . In Disability and Society , Edited by: Goodley , D. and Lawthom , R. 94 – 107 . Basingstoke : Palgrave-Macmillan .
  • Schenkman , M. , Cutson , T. M. , Zhu , C. W. and Whetten-Goldstein , J. 2002 . A longitudinal evaluation of patients’ perceptions of Parkinson’s disease . The Gerontologist , 42 : 760 – 798 .
  • Sharpe , L. and Curran , L. 2006 . Understanding the process of adjustment to illness . Social Science and Medicine , 62 : 1153 – 1166 .
  • Shotton , L. , Simpson , J. and Smith , M. 2007 . The experience of appraisal, coping and psychosocial adjustment in people following traumatic brain injury . Brain Injury , 21 : 857 – 869 .
  • Smith, J. A. & Eatough, V. (2007). Interpretative Phenomenological Analysis. In E. Lyons & A. Coyle (Eds.), Analysing qualitative data in psychology (pp. 35−50). London: Sage.
  • Smith , J. A. , Flowers , P. and Larkin , M. 2009 . Interpretative Phenomenological Analysis. Theory, method and research , London : Sage .
  • Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine, 48, 1507–1515.
  • Stone , N. 1987 . Amyotrophic lateral sclerosis: A challenge for constant adaptation . Journal of Neuroscience Nursing , 19 : 166 – 173 .
  • Tennen , H. and Affleck , G. 2002 . “ Benefit-finding and benefit reminding ” . In Handbook of positive psychology , Edited by: Snyder , C. R. and Lopez , S. J. 584 – 597 . London : Oxford University Press .
  • Thomas , C. 1999 . Female forms: Experiencing and understanding disability , Buckingham : Open University Press .
  • Tomich , P. and Helgeson , V. 2004 . Is finding something good in the bad always good? Benefit finding among women with breast cancer . Health Psychology , 23 : 16 – 23 .
  • Tsermentseli, S., Leigh, P. J., & Goldstein, L. H. (in press). The anatomy of cognitive impairment in amyotrophic lateral sclerosis: More than frontal lobe dysfunction. Cortex, Special issue: Review article. doi:10.1016/j.cortex.2011.02.004
  • Winhammar , J. M. C. , Rowe , D. B. , Henderson , R. D. and Kiernan , M. C. 2005 . Assessment of disease progression in motor neuron disease . The Lancet Neurology , 4 : 229 – 238 . doi:10.1016/S1474-4422(05)70042-9
  • Worms , P. M. 2001 . The epidemiology of motor neuron diseases: A review of recent studies . Journal of the Neurological Sciences , 191 : 3 – 9 .
  • Zindel, V., Segal, J. D., Teasdale, J., & Williams, M. G. (2010). Mindfulness-based cognitive therapy: Theoretical rationale and empirical status. In S. C. Hayes, V. M. Follette, & M. M. Linehan (Eds.), Mindfulness and acceptance: Expanding the cognitive – Behavioural tradition (pp. 45−65). London: The Guilford Press.

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