The needs and experiences of caregivers of individuals with multiple sclerosis: A systematic review

Clinical Rehabilitation

Volumn 17, Issue 3, 2003, Pages 234-248

  McKeown, Laura P ^a   Porter Armstrong, A P ^a   Baxter, G D ^a  

^a UNIVERSITY OF ULSTER   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CAREGIVER; CLINICAL RESEARCH; COMPUTER SYSTEM; CONTROLLED STUDY; COPING BEHAVIOR; DATA BASE; EXPERIMENTAL DESIGN; FINANCIAL MANAGEMENT; HUMAN; INFORMATION RETRIEVAL; JOB ANALYSIS; MEDLINE; METHODOLOGY; MULTIPLE SCLEROSIS; PATIENT CARE; PHYSICAL ACTIVITY; PSYCHOLOGICAL ASPECT; PSYCINFO; QUALITY OF LIFE; RELIABILITY; RETROSPECTIVE STUDY; SOCIAL LIFE; SOCIAL SUPPORT; STRESS; VALIDATION PROCESS; WELLBEING;

CAREGIVERS; HUMANS; MULTIPLE SCLEROSIS; QUALITY OF LIFE; QUESTIONNAIRES; SEVERITY OF ILLNESS INDEX; SOCIAL SUPPORT;

EID: 0037408344     PISSN: 02692155     EISSN: None     Source Type: Journal    
DOI: 10.1191/0269215503cr618oa     Document Type: Article

References (82)

1. Leary SM, Thompson AJ. Current management of multiple sclerosis. Int J Clin Pract 2000; 54: 161-69.
2. McDonnell GV, Hawkins SA. An assessment of the spectrum of disability and handicap in multiple sclerosis: a population based study. Multiple Sclerosis 2001; 7: 111-17.
3. Gonzalez-Scarano F, Rima B. Infectious etiology in multiple sclerosis: the debate continues. Trends Microbiol 1999; 7: 475-77.
4. Kersten P, McLellan DL, Cross-Paju K et al. A questionnaire assessment of unmet needs for rehabilitation services and resources for people with multiple sclerosis: results of a pilot study in five European countries. Clin Rehabil 2000; 14: 42-49.
5. Chipchase SY, Lincoln NB. Factors associated with carer strain in carers of people with multiple sclerosis. Disabil Rehabil 2001; 23: 768-76.
6. Gulick EE. Symptom and activities of daily living trajectory in multiple sclerosis: a 10-year study. Nuts Res 1998; 47: 137-46.
7. Aronson KL, Cleghorn G. Goldenberg E. Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disabil Rehabil 1996; 18: 354-61.
8. Aronson KJ, Goldenberg E, Cleghorn G. Socio-demographic characteristics and health status of persons with multiple sclerosis and their care givers. MS Management 1996; April: 1-12.
9. Aronson KJ. Quality of life among persons with multiple sclerosis and their caregivers. Neurology 1997; 48: 74-80.
10. Cockerill R, Warren S. Care for caregivers: the needs of family members of MS patients. J Rehabil 1990; 56: 41-44.
11. DeRosier MB, Catanzaro M, Piller J. Living with chronic illness: social support and the well spouse perspective. Rehabil Nurs 1992; 17: 87-91.
12. Dewis MME, Niskala H. Nurturing a valuable resource: family caregivers in multiple sclerosis. Axon 1992; March: 87-94.
13. Good DM, Bower DA, Einsporn RL. Social support: gender differences in multiple sclerosis spousal caregivers. J Neurosci Nurs 1995; 27: 305-11.
14. Gregory RJ, Disler P, Firth S. Caregivers of people with multiple sclerosis: a survey in New Zealand. Rehabil Nurs 1996; 21: 31-37.
15. Gulick E. Coping among spouses or significant others of persons with multiple sclerosis. Nurs Res 1995; 44: 220-25.
16. Hainsworth MA. Helping spouses with chronic sorrow related to multiple sclerosis. J Psychosocial Nurs 1996; 34: 36-40.
17. Knight RG, Devereux RC, Godfrey HPD. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997; 19: 7-19.
18. O'Brien MT. Multiple sclerosis. The role of social support and disability. Clin Nurs Res 1993; 2: 67-85.
19. O'Brien MT. Multiple sclerosis: health promoting behaviors of spousal caregivers. J Neurosci Nurs 1993; 25: 105-12.
20. O'Brien MT. Multiple sclerosis: stressors and coping strategies in spousal caregivers. J Commun Health Nurs 1993; 10: 123-35.
21. O'Brien RA, Wineman NM, Nealon NR. Correlates of the caregiving process in multiple sclerosis. Sch Inq Nurs Pract 1995; 9: 323-42.
22. Pakenham KI. Application of a stress and coping model to caregiving in multiple sclerosis. Psychol Health Med 2001; 6: 13-27.
23. Pakenham KI. Development of a measure of coping with multiple sclerosis caregiving. Psychol Health 2002; 17: 97-118.
24. Sato A, Ricks K, Watkins S. Needs of caregivers of clients with multiple sclerosis. J Commun Health Nurs 1996; 13: 31-42.
25. Weinert C, Long KA. Support systems for the spouses of chronically ill persons in rural areas. Family Commun Health 1993; 16: 46-54.
26. Winslow B, O'Brien R. Use of formal community resources by spouse caregivers of chronically ill adults. Public Health Nurs 1992; 9: 128-32.
27. Wollin J, Reiher C, Spencer N, Madl R, Nutter H. Caregiver burden: meeting the needs of people who support the person with multiple sclerosis. Int J MS Care 1999; 1: 6-15.
28. Wollin J, Sato A. An international comparison of caregiver burden in multiple sclerosis. Australas J Neurosci 2001; 14: 21-25.
29. Miller DM. Caregiving in chronic illness: the experience of married persons whose spouses have MS. Doctoral dissertation, Mandel School of Applied Social Sciences, 1990.
30. Rosenbaum T, Cockerill R. Survey of needs-related characteristics of the multiple sclerosis population. Toronto: Health Care Research Unit, University of Toronto, Faculty of Medicine, 1987.
31. Ritvo P, Miller D, Fischer J, LaRocca N. Report of work completed during phase I development of the MS Core Inventory by the CMSC Health Services Research Subcommittee. In: Consortium of MS Centres Conference, 1993. Victoria, 1993.
32. Kraft GH, Freal JE, Coryell JK. Disability, disease duration, and rehabilitation service needs in multiple sclerosis: patient perspectives. Arch Phys Med Rehabil 1986; 67: 164-68.
33. Greenspun B, Stineman M, Agri R. Multiple sclerosis and rehabilitation outcome. Arch Phys Med Rehabil 1987; 68: 434-37.
34. General Social Survey. Statistics Canada, Ottawa, 1985.
35. Brooks NA, Matson RR. Social-psychological adjustment to multiple sclerosis. Soc Sci Med 1982; 16: 2129-35.
36. Ware JE, Sherbourne CD. The SF-36 health status survey: I. Conceptual framework and item selection. Med Care 1992; 30: 473.
37. Carton H, Loos R, Pacolet J, Versieck K, Vlietinck R. A quantitative study of unpaid caregiving in multiple sclerosis. Multiple Sclerosis 2000; 6: 274-79.
38. Kurtzke JF. Rating neurological impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology 1983; 33: 1444-52.
39. Nelson HE. National Adult Reading Test. Test manual. Windsor: NFER-Nelson, 1982.
40. Buschke H. Selective reminding for analysis of memory and learning. J Verbal Learning Verbal Behav 1973; 12: 543-50.
41. Wechsler D. Wechsler memory scale - revised. New York: Psychological Corporation, 1987.
42. Beaver CT, Grattan L, Panitch HS, Johnson KP. The brief repeatable battery of neuropsychological tests for MS: a preliminary study. Multiple Sclerosis 1995; 1: 165-69.
43. Sunderland A, Harris JE, Gleave J. Memory failures in everyday life following severe head injury. J Clin Neuropsychol 1984; 6: 127-42.
44. Stroop JR. Studies of interference in serial verbal reaction. J Exp Psychol 1935; 18: 643-62.
45. Goldberg DP, Hillier VF. A scales version of the General Health Questionnaire. Psychol Med 1979; 9: 139-45.
46. Sharrack B, Hughes RA. The Guy's Neurological Disability Scale (GNDS): a new disability measure for multiple sclerosis. Multiple Sclerosis 1999; 5: 223-33.
47. Nouri FM, Lincoln NB. An extended activities of daily living scale for stroke patients. Clin Rehabil 1987; 1: 301-305.
48. Hauser SL, Dawson DM, Lehrich JR. Intensive immunosuppression in progressive multiple sclerosis: a randomised, three arm study of high dose intravenous cyclophosphamide, plasma exchange, and ACTH. N Engl J Med 1983; 308: 173-80.
49. Robinson B. Validation of a caregiver strain index. J Gerontol 1983; 38: 344-48.
50. Benoliel JQ, McCorkle R, Young K. Development of a social dependency scale. Res Nurs Health 1980; 3: 3-10.
51. Weinert C, Brandt PA. Measuring social support with the personal resource questionnaire. Western J Nurs Res 1987; 9: 589-602.
52. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Social Behav 1983; 24: 385-96.
53. George LK. Caregiver well-being: correlates and relationships with participation in community self-help groups. A final report submitted to AARP. Andrus Foundation, Washington DC, 1983.
54. Gulick EE. Parsimony and model confirmation of the ADL self-care scale for multiple sclerosis. Nurs Res 1987; 36: 278-83.
55. Jalowiec A. Confirmatory factor analysis of the Jaloweic coping scale. In: Waltz CF, Strickland OL eds. Measurement of nursing outcomes. New York: Springer, 1988: 287-308.
56. Burke ML. Chronic sorrow in mothers of school-age children with myelomengocele disability. Dissertation Abstracts Int 1989; 0930: 89-20.
57. Sarason IJ, Levine HM, Basham RB, Sarason BR. Assessing social support: the social support questionnaire. J Pers Soc Psychol 1983; 44: 127-39.
58. Katz S, Ford A, Moskowitz R, Jackson B, Jaffe M. Studies of illness in the aged: the index of ADL, a standardized measure of biological and psychological function. JAMA 1963; 185: 914-19.
59. Folkman S. Lazarus R. An analysis of coping in middle-aged community sample. J Health Soc Behav 1980; 21: 219-39.
60. Walker SN, Sechrist KR, Pender NJ. The health-promoting lifestyle profile: development and psychometric characteristics. Nurs Res 1987; 36: 76-80.
61. Holland NJ, Francabandera F, Wiesel-Levinson P. International scale for assessment of disability in multiple sclerosis. J Neurosci Nurs 1986; 18: 39-44.
62. Montgomery RJV, Gonyea JG, Hooyman NR. Caregiving and the experience of subjective and objective burden. Family Relations 1985; 34: 19-26.
63. Mishel MH. The measurement of uncertainty in illness. Nurs Res 1981; 30: 98-112.
64. McCubbin HI, Larsen AS, Olson DH. F-COPES. St Paul: University of Minnesota, 1982.
65. Hirsch BJ. Psychological dimensions of social networks: a multimethod analysis. Am J Commun Psychol 1979; 7: 263-77.
66. Olson DH, McCubbin HI, Barnes H, Larsen A, Muxen M, Wilson M. Families: what makes them work. Beverly Hills: Sage Publications, 1989.
67. Wood V, Wylie ML, Sheafor B. An analysis of a short measure of life satisfaction: correlation with rater judgements. J Gerontol 1969; 24: 465-69.
68. McNair DM, Lorr M, Droppleman LF. Profile of mood states manual. San Diego: Educational and Industrial Testing Service, 1971/1981.
69. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final version of a health status measure. Med Care 1981; 17: 787-805.
70. Derogatis LR, Spencer PM. Administration and procedures: BSI manual-I. Baltimore: Clinical Psychometric Research, 1982.
71. Folkman S, Lazarus RS, Gruen RJ, Delongis A. Appraisal coping, health status and psychological symptoms. J Pers Soc Psychol 1986; 50: 571-79.
72. Zich J, Temoshok L. Perceptions of social support, distress, and hopelessness in men with AIDS and ARC: clinical implications. In: Temoshok L, Baum A eds. Psychosocial perspectives on AIDS. New Jersey: Lawrence Erlbaum, 1987: 201-27.
73. Vitaliano PP, Russo J, Carr JE, Maiuro RD, Becker J. The Ways of Coping Checklist: revision and psychometric properties. Multivariate Behav Res 1985; 20: 3-26.
74. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry 1961; 4: 561-71.
75. Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers of persons with chronic physical and mental impairments. Res Nurs Health 1992; 15: 271-83.
76. Spanier GB. Measuring dyadic adjustment: new scales for assessing quality of marriage and similar dyads. J Marriage Family 1976; 38: 15-28.
77. Tilden VP, Nelson CA, May BA. The interpersonal relationship inventory: development and psychometric characteristics. Nurs Res 1990; 39: 337-43.
78. Hoge D. Validated intrinsic motivation scale. J Sci Study Religion 1972; 11: 396-71.
79. Slater RJ. Functional disability ratings: medical, social and economic implications (summary of discussions). Acta Neurol Scand 1981; 64: 105-29.
80. Donaldson C, Tarrier N, Burns A. The impact of the symptoms of dementia on caregivers. Br J Psychiatry 1997; 170: 62-68.
81. Laizner AM, Shegda Yost LM, Barg FK, McCorkle R. Needs of family caregivers of persons with cancer: a review. Semin Oncol Nurs 1993; 9: 114-20.
82. Harrington V, Lackey N, Gates M. Needs of caregivers of clinic and hospice cancer patients. Cancer Nurs 1996; 19: 118-25.