Perceptions of informal care givers: Health and support services provided to people with multiple sclerosis

Disability and Rehabilitation

Volumn 32, Issue 6, 2010, Pages 500-510

  Buchanan, Robert ^a   Radin, Dagmar ^a   Chakravorty, Bonnie J ^b   Tyry, Tuula ^c  

^a MISSISSIPPI STATE UNIVERSITY   (United States)

^b TENNESSEE STATE UNIVERSITY   (United States)

^c BARROW NEUROLOGICAL INSTITUTE   (United States)

Author keywords

Care giver; Health services; Multiple sclerosis

Indexed keywords

ARTICLE; CAREGIVER; COMMUNITY CARE; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DAILY LIFE ACTIVITY; ECONOMICS; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE SURVEY; HUMAN; INSURANCE; INTERVIEW; MALE; MIDDLE AGED; MULTIPLE SCLEROSIS; PSYCHOLOGICAL ASPECT; UNITED STATES; UTILIZATION REVIEW;

ACTIVITIES OF DAILY LIVING; CAREGIVERS; COMMUNITY HEALTH SERVICES; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH CARE SURVEYS; HEALTH SERVICES ACCESSIBILITY; HUMANS; INSURANCE COVERAGE; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; MULTIPLE SCLEROSIS; UNITED STATES;

EID: 76449083568     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.3109/09638280903171485     Document Type: Article

References (41)

1. National Multiple Sclerosis Society. Who gets MS? 2008. Electronic Citation. http://www.nationalmssociety.org/aboutmultiple- sclerosis/who-gets-ms/ index.aspx. Last accessed June 2009
2. Swain S. Multiple sclerosis. Primary health care implications. Nurse Practitioner 1996;21:40, 43,47-50.
3. Bradley W, Daroff R, Fenichel G, Marsden C. Neurology in clinical practice, 2nd ed. Newton, MA: Butterworth- Heinemann, 1996.
4. Lublin F, Reingold S. Defining the clinical course of multiple sclerosis: results of an international survey. Neurology 1996; 46:907-911.
5. Rudick R. Cohen J. Weinstock-Guttman B. Kinkel R. Ransohoff R. Drug therapy: management of multiple sclerosis. New Eng J Med 1997;337:1604-1611.
6. National Multiple Sclerosis Society. What is multiple sclerosis? 2008. Electronic Citation. http://www.nationalmssociety. org/about-multiple-sclerosis/ what-is-ms/index.aspx. Last accessed June 2009
7. National Multiple Sclerosis Society. Frequently asked questions about multiple sclerosis. 2008. Electronic Citation. http://www.nationalmssociety.org/ about-multiple-sclerosis/ FAQs-about-MS/index.aspx#symptoms. Last accessed June 2009
8. Somerset M, Sharp D, Campbell R. Multiple sclerosis and quality of life: a qualitative investigation. J Health Ser Res Policy 2002;7:151-159.
9. Thompson AJ, Hobart JC. Multiple sclerosis: assessment of disability and disability status. J Neurol 1998;245:189-196.
10. McKeown LP, Porter-Armstyrong AP, Baxter GD. Caregivers of people with multiple sclerosis: experiences of support. Mult Scler 2004;10:219-230.
11. McKeown LP, Porter-Armstyrong AP, Baxter GD. The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil 2003; 17:234-248.
12. Minden SL, Frankel D, Hadden LS, Srinath KP, Perloff JN. Disability in elderly people with multiple sclerosis: an analysis of baseline data from the Sonya Slifka Longitudinal Multiple Sclerosis Study. Neuro Rehabil 2004;19:55-67.
13. National Multiple Sclerosis Society. Research Highlights; Winter/Spring, 2007. Sonya Slifka Longitudinal Study Renewed. Electronic Citation. http://www.nationalmssociety. org/download.aspx?id=77. Last accessed June 2009.
14. O'Hara L, DeSouza L, Ide L. The nature of care giving in a community sample of people with multiple sclerosis. Disabil Rehabil 2004;26:1401-1410.
15. Aronson KJ, Cleghorn G, Goldenberg E. Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disabil Rehabil 1996;18:354-361.
16. Carton H, Loos R, Pacolet J, Versieck K, Vlietinck R. A quantitative study of unpaid caregiving in multiple sclerosis. Mult Scler 2000;6:274-279.
17. Pozzilli C, Palmisano L, Mainero C, Tomassini V, Marinelli F, Ristori G, Gasprini C, Fabiani M, Battaglia MA. Relationship between emotional distress in caregivers and health status in persons with multiple sclerosis. Mult Scler 2004;10:442-446.
18. McKeown LP, Porter-Armstrong AP, Baxter GD. The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil 2003;17:234-248.
19. Khan F, Pallant J, Brand C. Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis. Disabil Rehabil 2007;29:1241-1250. (Pubitemid 47189917)
20. Rivera-Navarro J, Morales-Gonzalez JM, Benito-Leon J, Madrid Demyelinating Diseases Group (GEDMA). Informal caregiving in multiple sclerosis patients: data from the Madrid demyelinating disease group study. Disabil Rehabil 2003;25: 1057-1064.
21. Knight RG, Devereux RC, Godfrey HP. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997;19:7-19.
22. Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. J Neurol Neurosurg Psychiatr 2007;78:1097-1102.
23. Alshubaili A, Ohaeri JU, Awadalla AW, Mabrouk AA. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study. BMC Health Services Research 2008. 206. Electronic Citation. http://www. biomedcentral.com/1472- 6963/8/206. Last accessed June 2009
24. Pakenham KI. The positive impact of multiple sclerosis (MS) on carers: associations between carer benefit finding and positive and negative adjustment domains. Disabil Rehabil 2005;27:985-997.
25. Buchanan RJ, Radin D, Chakravorty BJ, Tyry T. Informal care giving to more disabled people with multiple sclerosis. Disabil Rehabil 2009;31:1244-1256.
26. Minden SL, Frankel D, Hadden L, Perloff J, Srinath KP, Hoaglin DC. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Mult Scler 2006;12:24-38.
27. Agency for Healthcare Research and Quality. CAHPSR Health Plan Survey 3.0 Adult Commercial Questionnaire. 2006. Electronic Citation. https://www.cahps. ahrq.gov/CAHPSkit/ files/ce151ad-engadultcom-3.0.doc. Last accessed June 2009.
28. Anderson RT, Weisman CS, Camacho F, Scholle SH, Henderson JT, Farmer DF. Women's satisfaction with their on-going primary health care services: a consideration of visitspecific and period assessments. Health Ser Res 2007;42: 663-681.
29. Sadovnick AD, Remick RA, Allen J, Swartz E' Yee IM, Eisen K, Farquhar R, Hashimoto SA, Hooge J, Kastrukoff LF, Morrison W, Nelson J, Oger J, Paty DW. Depression and multiple sclerosis. Neurology 1996;46:628-632.
30. Nyenhuis DL, Rao SM, Zajecka JM, Luchetta T, Bernardin L, Garron DC. Mood disturbance versus other symptoms of depression in multiple sclerosis. J Int Neuropsychol Soc 1995; 1:291-296.
31. Kroll T, Neri MT. Use of primary prevention services among male adults with cerebral palsy, multiple sclerosis, or spinal cord injury in managed care and fee-for-service. Manag Care Q 2004;12:6-10.
32. Kroll T, Neri MT. Experiences with care co-ordination among people with cerebral palsy, multiple sclerosis, or spinal cord injury. Disabil Rehabil 2003;25:1106-1114.
33. Master RJ, Eng C. Integrating acute and long term care for high-cost populations; an in-depth look at two successful models, and the impediments to their expansion. Health Aff 2001;20:161-172.
34. Wholey DR, Burns L.R, Lavizzo-Mourey R. Managed care and the delivery of primary care to the elderly and the chronically ill. Health Ser Res 1998;33:322-353.
35. Beatty PW, Hagglund KJ, Neri MT, Dhont KR, Clark MJ, Hilton SA. Access to health care services among people with chronic or disabling conditions: patterns and predictors. Arch Phys Med Rehabil 2003;84:1417-1425.
36. Desselle SP. Consumers' lack of awareness on issues pertaining to their prescription drug coverage. J Health Soc Policy 2003;17:21-39.
37. Tucker JL. Patients' knowledge of health plan coverage and satisfaction with care. Am J Manag Care 2001;7:453-459.
38. Flores G, Abreu M, Sund, Tomany SC. Urban parents' knowledge and practices regarding managed care. Med Care 2004;42:336-345.
39. Yaffe K, Fox P, Newcomer R, Sands L, Lindquist K, Dane K, Covinsky KE. Patient and caregiver characteristics and nursing home placement in patients with dementia. J Am Med Assoc 2002;287:2090-2097.
40. McGann JJ, Hebert LE, Li Y, Wolinsky FD, Gilley DW, Aggarwal NT, Miller JM, Evans DA. The effect of adult day care services on time to nursing home placement in older adults with Alzheimer's disease. Gerontologist 2005;45: 754-763.
41. Tsuji I, Whale S, Finucane TE. Predictors of nursing home placement in community-based long term care. J Am Geriatr Soc 1995;43:761-766.