1,264
Views
25
CrossRef citations to date
0
Altmetric
Research Article

The family of the multiple sclerosis patient: A psychosocial perspective

, , &
Pages 83-89 | Published online: 11 Mar 2010

References

  • Aronson K. Quality of life among persons with multiple sclerosis and their caregivers. Neurology 1997; 48: 74–80
  • Battaglia MA, Zagami P, Uccelli MM. A cost evaluation of multiple sclerosis. Journal of Neurovirology 2000; 6: S191–S193
  • Blackstone M. The first year-multiple sclerosis: An essential guide for the newly diagnosed. Marlowe and Co, New York 2002
  • Bogosian A, Moss-Morris R, Yardley L, Dennison L. Experiences of partners of people in early stages of multiple sclerosis. Multiple Sclerosis 2009; 15: 876–884
  • Buhse M. Assessment of caregiver burden in families of persons with multiple sclerosis. Journal of Neuroscience Nursing 2008; 40: 25–31
  • Campbell TL, Patterson JM. The effectiveness of family interventions in the treatment of physical illness. Journal of Marital and Family Therapy 1995; 21: 545–583
  • Centers for Disease Control and Prevention. Health-related quality of life measures – United States. Morbidity and Mortality Weekly Report 1995; 44: 195–200
  • Chabas D, Strober J, Waubant E. Pediatric multiple sclerosis. Current Neurology and Neuroscience Report 2008; 8: 434–441
  • Chipchas SY, Lincoln NB. Factors associated with carer strain in carers of people with multiple sclerosis. Disability and Rehabilitation 2001; 23: 768–776
  • Coleman J, Rath L, Carey J. Multiple sclerosis and the role of the MS nurse consultant. Australian Nursing Journal 2001; 9: CU1–CU4
  • Courts N, Newton A, McNeal L. Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing 2005; 37: 20–27
  • Dale B, Altschuler J. ‘In sickness and in health’: The development of alternative discourses in work with families with parental illness. Journal of Family Therapy 1999; 21: 267–283
  • Diareme S, Tsiantis J, Kolaitis G, Ferendinos S, Tsalamanios E, Paliokosta E, et al. Emotional and behavioral difficulties in children of parents with multiple sclerosis: a controlled study in Greece. European Child and Adolescent Psychiatry 2006; 15: 309–318
  • Donato, K. & Wakabayashi C. Women caregivers more likely to face poverty. Presentation at the American Sociological Association conference, San FranciscoAugust, 2005
  • Finlayson M, Cho C. A descriptive profile of caregivers of older adults with MS and the assistance they provide. Disability and Rehabilitation 2008; 30: 1848–1857
  • Finlayson M, Van Denend T, Hudson E. Aging with multiple sclerosis. Journal of Neuroscience Nursing 2004; 36(5)245–251, 259
  • Fisher L, Ransom DC, Terry HE, Lipkin M, Jr, Weiss R. The California Family Health Project: I. Introduction and description of adult health. Family Process 1992; 31: 231–250
  • Flachenecker P, Stuke K. National MS registries. Journal of Neurology 2008; 255: S102–S108
  • Glantz MJ, Chamberlain MC, Lin Q, Hsien CC, Edwards KR, Van Horn A, et al. Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer Nov 15, 2009; 115(22)5237–5242
  • Gulick EE. Symptom and activities of daily living trajectory in multiple sclerosis: A 10 year study. Nursing Research 1998; 47: 137–146
  • Hakim EA, Bakheit AM, Bryant TN, Roberts MW, McIntosh-Michaelis SA, Spackman AJ, et al. The social impact of multiple sclerosis – A study of 305 patients and their relatives. Disability & Rehabilitation 2000; 22: 288–293
  • Halper J. The psychosocial effect of multiple sclerosis: The impact of relapses. Journal of the Neurological Sciences 2007; 256: S34–S38
  • Hileman J, Lackey N, Hassanien R. Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum 1992; 19: 771–777
  • Holland N, Northrup D. Young adults with multiple sclerosis: Management in the home. Home Health Care Management and Practice 2006; 18: 186–195
  • Im-Wang S. Development of a Handbook for Parents of Children with Pediatric Multiple Sclerosis: A Psychologist's Focus on School Issues. Dissertation Abstracts International: Section B: The Sciences and Engineering. The Wright Institute, San Francisco, California 2008, 69(3-B), 1935
  • Ivanova JI, Birnbaum HG, Samuels S, Davis M, Phillips AL, Meleticho D. The cost of disability and medically related absenteeism among employees with multiple sclerosis in US. Pharmacoeconomics 2009; 27: 681–691
  • Janssens ACJW, vanDoorn PA, deBoer JB, van der Meche FGA, Passchier J, Hintzen RQ. Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurologica Scandinavica 2003; 108: 389–395
  • Kalb RC. Multiple sclerosis: A guide for families, 3rd. Demos Medical Publishing, Demos Vermande, NY 2005
  • Kalb R. The emotional and psychological impact of multiple sclerosis relapses. Journal of the Neurological Sciences 2007; 256: S29–S33
  • Kasuya R, Polgar-Bailey P, Takenchi R. Caregiver burden and burnout: A guide for primary care physicians. Postgraduate Medicine 2000; 108: 1–7
  • Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: The Neuropsychiatric Inventory Caregiver Distress Scale. Journal of the American Geriatrics Society 1998; 46: 210–215
  • Knight RG, Devereux RC, Godfrey HP. The psychosocial consequences of caring for a spouse with multiple sclerosis. Journal of Clinical and Experimental Neuropsychology 1997; 19: 7–19
  • Kobelt G, Berg J, Lindgren P, Kerrigan J, Russell N, Nixon R. Costs and quality of life of multiple sclerosis in the United Kingdom. European Journal of Health Economics 2006; 7: S96–S104
  • Kobelt G, Texier-Richards B, Lindgren P. The long-term cost of multiple sclerosis in France and potential changes with disease-modifying interventions. Multiple Sclerosis 2009; 15: 741–751
  • Koopman W, Benbow C, Vandervoot M. Top 10 needs of people with multiple sclerosis and their significant others. Journal of Neuroscience Nursing 2006; 38: 369–373
  • Krupp LB, MacAllister WS. Treatment of pediatric multiple sclerosis. Current Treatment Options in Neurology 2005; 7: 191–199
  • Lynch SG, Kroencke DC, Denney DR. The relationship between disability and depression in multiple sclerosis: The role of uncertainty, coping and hope. Multiple Sclerosis 2001; 7: 411–416
  • McCabe MP, Firth L, O’Connor E. A comparison of mood and quality of life among people with progressive neurological illnesses and their caregivers. Journal of Clinical Psychology in Medical Settings 2009; 16(4)355–362
  • McGuffin P, Katz R, Aldrich J, Bebbington P. The Camberwell Collaborative Depression Study II. Investigation of family members. British Journal of Psychiatry 1988; 152: 766–774
  • McKeown L, Porter-Armstrong A, Baxter G. The needs and experiences of caregivers of individuals with multiple sclerosis: A systematic review. Clinical Rehabilitation 2003; 17: 234–248
  • McKeown L, Porter-Armstrong A, Baxter G. Caregivers of people with multiple sclerosis: Experiences of support. Multiple Sclerosis 2004; 10: 219–230
  • Mei-Tal V, Meyerowitz S, Engel GL. The role of psychological process in a somatic disorder: Multiple sclerosis. Psychosomatic Medicine 1970; 32: 67–85
  • Montel SR, Bungener C. Coping and quality of life in 135 subjects with multiple sclerosis. Multiple Sclerosis 2007; 13: 393–401
  • Moss-Morris R, Dennison L, Yardley L, Landau S, Roche S, McCrone P, et al. Protocol for the SAMS trial (supportive adjustment for multiple sclerosis): A randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis. BioMedCentral Neurology 2009; 9: 45
  • Mutch K. Information for young people when multiple sclerosis enters the family. British Journal of Nursing 2005; 14: 758–760
  • O’Brien MT. Multiple sclerosis: Stress and coping strategies in spousal caregivers. Journal of Community Health Nursing 1993; 10: 123–135
  • O’ Brien R, Wineman N, Nelson N. Correlates of the caregiving process in multiple sclerosis. Scholarly Inquiry for Nursing Practice 1995; 9: 323–338
  • Pakenham K. The positive impact of multiple sclerosis (MS) on carers: Association between carer benefit finding and positive and negative adjustment domains. Disability and Rehabilitation 2005; 27: 985–997
  • Paliokosta E, Diareme S, Kolaitis G, Ferentinos S, Lympinaki A, Tsiantis J, et al. Breaking the bad news: Communication around parental multiple sclerosis with children. Families, Systems and Health 2009; 27: 64–76
  • Patterson JM, Garwick AW. The impact of chronic disease on families: A family systems perspective. Annals of Behavioral Medicine 1994; 16: 131–142
  • Penn P. Coalitions and binding interactions in families with chronic illness. Family Systems Medicine 1983; 1: 16–25
  • Rolland JS. Families, Illness and Disability: An Integrative Treatment Model. Basic Books, New York 1994a
  • Rolland JS. In sickness and in health: The impact of illness on couples’ relationships. Journal of Marital and Family Therapy 1994b; 20: 327–349
  • Rolland JS. Parental illness and disability: A family systems framework. Journal of Family Therapy 1999; 21: 242–266
  • Sherman TE, Rapport LJ, Hanks RA, Ryan KA, Keenan PA, Khan O, et al. Predictors of well-being among significant others of persons with multiple sclerosis. Multiple Sclerosis 2007; 13: 238–249
  • Stucki BR, Mulvey J. Can Aging Baby Boomers Avoid the Nursing Home? Long Term Care Insurance for Aging in Place. American Council of Life Insurers, Washington, DC 2000
  • Thannhauser JE. Grief-peer dynamics: Understanding experiences with pediatric multiple sclerosis. Qualitative Health Research 2009; 19: 766–777
  • Thomas PW, Thomas S, Hillier C, Galvin K, Baker R. Psychological Interventions for Multiple Sclerosis. Cochrane Database of Systematic Reviews. Issue 1, CD004431, John Wiley and Sons, Ltd, Indianapolis 2006
  • Turpin M, Leech C, Hackenberg L. Living with parental multiple sclerosis: Children's experiences and clinical implications. Canadian Journal of Occupational Therapy 2008; 75: 149–156
  • Vaughn C, Leff J. The influence of family and social factors on the course of psychiatric illness. British Journal of Psychiatry 1976; 129: 125–137
  • Waldron-Perrine B, Rapport LJ, Ryan KA, Harper KT. Predictors of life satisfaction among caregivers of individuals with multiple sclerosis. The Clinical Neuropsychologist 2008; 23: 462–478
  • Wang Q. Disability and American Families: 2000. Census 2000 Special Reports. US Census Bureau, Washington, DC 2005
  • Whetten-Goldstein K, Sloan FA, Goldstein LB, Kulas ED. A comprehensive assessment of the cost of multiple sclerosis in the United States. Multiple Sclerosis 1998; 4: 419–425
  • Wollin J, Reiher C, Spencer N, Madl R, Nutter H. Caregiver burden: Meeting the needs of people who support the person with multiple sclerosis. International Journal of Multiple Sclerosis Care 1999; 1: 6–15
  • Yahav R, Vosburgh J, Miller A. Emotional responses of children and adolescents to parents with multiple sclerosis. Multiple Sclerosis 2005; 11: 464–468
  • Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist 1980; 20: 649–655

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.