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

References

• National Multiple Sclerosis Society. Who gets MS? 2008. Electronic Citation. http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/index.aspx. Last accessed June 2009
   Google Scholar
• Swain S. Multiple sclerosis. Primary health care implications. Nurse Practitioner 1996;21:40, 43,47–50.
   Google Scholar
• Bradley W, Daroff R, Fenichel G, Marsden C. Neurology in clinical practice, 2nd ed. Newton, MA: Butterworth-Heinemann, 1996.
   Google Scholar
• Lublin F, Reingold S. Defining the clinical course of multiple sclerosis: results of an international survey. Neurology 1996;46:907–911.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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
   Google Scholar
• 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
   Google Scholar
• Somerset M, Sharp D, Campbell R. Multiple sclerosis and quality of life: a qualitative investigation. J Health Ser Res Policy 2002;7:151–159.
   PubMedGoogle Scholar
• Thompson AJ, Hobart JC. Multiple sclerosis: assessment of disability and disability status. J Neurol 1998;245:189–196.
   PubMed Web of Science ®Google Scholar
• McKeown LP, Porter-Armstyrong AP, Baxter GD. Caregivers of people with multiple sclerosis: experiences of support. Mult Scler 2004;10:219–230.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   Google Scholar
• 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.
   Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Knight RG, Devereux RC, Godfrey HP. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997;19:7–19.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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
   Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Buchanan RJ, Radin D, Chakravorty BJ, Tyry T. Informal care giving to more disabled people with multiple sclerosis. Disabil Rehabil 2009;31:1244–1256.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   Google Scholar
• 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 visit-specific and period assessments. Health Ser Res 2007;42:663–681.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMedGoogle Scholar
• 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.
   PubMedGoogle Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Desselle SP. Consumers' lack of awareness on issues pertaining to their prescription drug coverage. J Health Soc Policy 2003;17:21–39.
   PubMedGoogle Scholar
• Tucker JL. Patients' knowledge of health plan coverage and satisfaction with care. Am J Manag Care 2001;7:453–459.
   PubMed Web of Science ®Google Scholar
• Flores G, Abreu M, Sun d, Tomany SC. Urban parents' knowledge and practices regarding managed care. Med Care 2004;42:336–345.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar