Family carers of ICU survivors: A survey of the burden they experience

Scandinavian Journal of Caring Sciences

Volumn 17, Issue 3, 2003, Pages 205-214

  Foster, Michelle ^a   Chaboyer, Wendy ^b  

^a GOLD COAST UNIVERSITY HOSPITAL   (Australia)

^b GRIFFITH UNIVERSITY   (Australia)

Author keywords

Caregiver burden; Caregiver strain; Intensive care

Indexed keywords

CAREGIVER; CRITICAL ILLNESS; FAMILY; FAMILY MEDICINE; HUMAN; INTENSIVE CARE UNIT; LONG TERM CARE; MENTAL STRESS; PATIENT CARE; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; ATTITUDE TO HEALTH; AUSTRALIA; COST OF ILLNESS; FEMALE; HEALTH SURVEY; INTENSIVE CARE; MALE; MIDDLE AGED; NURSING; NURSING METHODOLOGY RESEARCH; PSYCHOLOGICAL ASPECT; SELF CONCEPT; SOCIAL SUPPORT; SURVIVOR; WORKLOAD;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; ATTITUDE TO HEALTH; CAREGIVERS; COST OF ILLNESS; CRITICAL ILLNESS; FAMILY; FEMALE; HEALTH SURVEYS; HUMANS; INTENSIVE CARE; MALE; MIDDLE AGED; NURSING METHODOLOGY RESEARCH; QUALITY OF LIFE; QUEENSLAND; QUESTIONNAIRES; SELF EFFICACY; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; SURVIVORS; WORKLOAD;

EID: 0242366702     PISSN: 02839318     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1471-6712.2003.00230.x     Document Type: Review

References (67)

1. Brooks R, Kerridge R, Hillman K, Baumann A, Daffurn K. Quality of life outcomes after intensive care. Intensive Care Med 1997; 23: 581-6.
2. Chaboyer W, Foster M, Creamer J. Health status of ICU survivors: a pilot study. Aust Crit Care 2002; 15: 21-26.
3. Daffurn K, Bishop GF, Hillman KM, Bauman A. Problems following discharge after intensive care. Intensive Crit Care Nurs 1994; 10: 244-51.
4. Jones C, O'Donnell C. After intensive care - what then. Intensive Crit Care Nurs 1994; 10: 89-92.
5. Russell S. Who knows where they go? Aust Nurs J 1996; 3: 20-22.
6. Teel CS, Duncan P, Lai SM. Caregiving experiences after stroke. Nurs Res 2001; 50: 53-60.
7. Hughes SL, Giobie-Hurder A, Weaver FM, Kubal JD, Henderson W. Relationships between caregiver burden and health-related quality of life. Gerontologist 1999; 39: 534-45.
8. Schofield H, Bloch S, Herrman H, Murphy B, Nankervis J, Singh B. Family Caregivers: Disability, Illness and Ageing. 1998, Allen Unwin, St Leonards.
9. Cicirelli VG. Attachment and obligation as daughters' motives for caregiving behavior and subsequent effect on subjective burden. Psychol Aging 1993; 8: 144-55.
10. Faison KJ, Faria SH, Frank D. Caregivers of chronically ill elderly: perceived burden. J Community Health Nurs 1999; 16: 243-53.
11. Bugge C, Alexander H, Hagen S. Stroke patients' informal caregivers: patient, caregiver, and service factors that affect caregiver strain. Stroke 1999; 30: 1517-23.
12. Chou KR, LaMontagne LL, Hepworth JT. Burden experienced by caregivers of relatives with dementia in Taiwan. Nurs Res 1999; 48: 206-14.
13. Clark M, Steinberg M, Bischoff N. Patient readiness for return home: discord between expectations and reality. Aust Occup Ther J 1997; 44: 132-41.
14. Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in alzheimer disease. Alzheimer Dis Assoc Disord 2001; 15: 129-36.
15. Johnson SK, Craft M, Titler M et al. Perceived changes in adult family members' roles and responsibilities during critical illness. Image: J Nurs Scholarsh 1995; 27: 238-43.
16. Pearlin L, Mullan J, Semple S, Skaff M. Caregiving and the stress process: an overview of the concepts and their measures. Gerontologist 1990; 30: 583-94.
17. Braithwaite V. Caregiving burden: making the concept scientifically useful and policy relevant. Res Aging 1992; 14: 3-27.
18. Ferrario SR, Zotti AM, Zaccaria S, Donner CF. Caregiver strain associated with tracheostomy in chronic respiratory failure. Chest 2001; 119: 1498-501.
19. Aranda SK, Hayman-White K. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs 2001; 24: 300-7.
20. Vedhara K, Shanks N, Anderson S, Lightman S. The role of stressors and psychosocial variables in the stress process: a study of chronic caregiver stress. Psychosom Med 2000; 62: 374-85.
21. Schultz R, Beach S. Caregiving as a risk factor for mortality: the caregiver health effects study. J Am Med Assoc 1999; 282: 2215-9.
22. Kane R, Reinardy J, Penrod J, Huck S. After the hospitalization is over: a different perspective on family care of older people. J Gerontol Soc Work 1999; 31: 119-41.
23. Jepson C, McCorkle R, Adler D, Nuamah I, Lusk E. Effects of home care on caregivers' psychosocial status. Image: J Nurs Scholarsh 1999; 31: 115-20.
24. Muscroft J, Bowl R. The impact of depression on caregivers and other family members: implications for professional support. Couns Psychol Q 2000; 13: 117-34.
25. Carers Association of Australia. National Survey of Carer Health and Wellbeing: Warning-Caring is a Health Hazard. 1999, Carers Association of Australia, Canberra.
26. Arber S, Ginn J. Gender differences in informal caring. Health Soc Care Community 1995; 3: 19-31.
27. Collins C, Jones R. Emotional distress and morbidity in dementia carers: a matched comparison of husbands and wives. Int J Geriat Psychiatry 1997; 12: 1168-73.
28. Sisk RJ. Caregiver burden and health promotion. Int J Nurs Stud 2000; 37: 37-43.
29. McGarry J, Arthur A. Informal caregiving in late life: a qualitative study of the experiences of older carers. J Adv Nurs 2001; 33: 182-9.
30. Schwarz KA, Roberts BL. Social support and strain of family of caregivers of older adults. Holist Nurs Pract 2000; 14: 77-90.
31. Scott G. A study of family carers of people with a life-threatening illness 2: implications of the needs assessment. Int J Palliative Nurs 2001; 7: 323-30.
32. Shaw C. A framework for the study of coping, illness behaviour and outcomes. J Adv Nurs 1999; 29: 1246-55.
33. Penning M. In the middle: parental caregiving in the context of other roles. J Gerontol 1998; 53: s188-s197.
34. Shyu Y. Patterns of caregiving when family caregivers face competing needs. J Adv Nurs 2000; 31: 35-43.
35. Australian Bureau of Statistics (ABS). Disability, Aging and Carers (ABS Catalogue no. 4430.0). 1999, Government Printers, Canberra.
36. Cicirelli VG. Adult children's attachment and helping behavior to elderly parents: a path model. J Marriage Family 1983; 44: 815-25.
37. Vrabec NJ. Literature review of social support and caregiver burden, 1980 to 1995. Image: J Nurs Scholarsh 1997; 29: 383-9.
38. Wollin J, Sato A. An international comparison of caregiver burden in multiple sclerosis. Australasia J Neurosci 2001; 14: 21-25.
39. Pender N, Murdaugh C, Parsons M. Health Promotion in Nursing Practice, 4th edn. 2002, Prentice Hall, New Jersey.
40. Perrins J, King N, Collings J. Assessment of long-term psychological well-being following intensive care. Intensive Crit Care Nurs 1998; 14: 108-16.
41. Smith C, Fernengel K, Holcroft C, Gerald K, Marien L. Meta-analysis of the associates between social support and health outcomes. Ann Behav Med 1994; 16: 352-62.
42. Robinson KM, Kaye J. The relationship between spiritual perspective, social support, and depression in caregiving and noncaregiving wives. Scholarly Inq Nurs Pract 1994; 8: 375-89.
43. Bandura A. Social Foundations of Thought and Action: A Social Cognitive Theory. 1986, Prentice Hall, New Jersey.
44. Bandura A. Self-efficacy: the Exercise of Control. 1997, Freeman and Company, New York.
45. Kurlowicz LH. Perceived self-efficacy, functional ability, and depressive symptoms in older elective surgery patients. Nurs Res 1998; 47: 219-26.
46. Solomon P, Draine J. Subjective burden among family members of mentally ill adults: Relation to stress, coping, and adaptation. Am J Orthopsychiat 1995; 64: 419-27.
47. Beckham JC, Burker EJ, Rice JR, Talton SL. Patient predictors of caregiver burden, optimism, and pessimism in rheumatoid arthritis. Behav Med 1995; 20: 171-8.
48. Jones C, Griffiths RD. Identifying post intensive care patients who may need physical rehabilitation. Clin Intensive Care 2000; 11: 35-38.
49. Hall-Smith J, Ball C, Coakley J. Follow-up services and the development of a clinical nurse specialist in intensive care. Intensive Crit Care Nur 1997; 13: 243-8.
50. Kausar R, Powell GE. Subjective burden on carers of patients with neurological problems as a consequence of precise objective symptoms (objective burden). Clin Rehabil 1996; 10: 159-65.
51. Schoenfelder DP, Swanson EA, Pringle-Specht JK, Maas M, Johnson M. Outcome indicators for direct and indirect caregiving. Clin Nurs Res 2000; 9: 47-69.
52. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist 1989; 29: 789-803.
53. Gallant MP, Connell M. Predictors of deceased self-care among spouse caregivers of older adults with dementing illnesses. J Aging Health 1997; 9: 373-95.
54. Arzi NB, Solomon Z, Dekel R. Secondary traumatization among wives of PTSD and post-concussion casualities: distress, caregiver burden and psychological separation. Brain Inj 2000; 148: 725-36.
55. Donald C, Ware J. The measurement of social support. Res Community Ment Health 1984; 4: 325-70.
56. Raphael D, Brown I, Renwick R, Cava M, Weir N, Heathcote K. Measuring the quality of life of older persons: a model with implications for community and public health nursing. Int J Nurs Stud 1997; 34: 231-9.
57. Woodruff SL, Cash JF. Task domain and general self-efficacy: a re-examination of the self-efficacy scale. Psychol Rep 1993; 72: 425-32.
58. Sherer M, Adams CH. Construct validation of the self-efficacy scale. Psychol Rep 1983; 53: 899-902.
59. Becker H, Schaller J. Perceived health and self-efficacy among adults with cerebral palsy. J Rehabil 1995; 61: 36-43.
60. Hampton NZ, Marshall A. Culture, gender, self-efficacy and life satisfaction: a comparison between Americans and Chinese people with spinal cord injuries. J Rehabil 2000; 66: 21-31.
61. Kim YH. Korean adolescents health risk behaviours and their relationship with selected psychological constructs. J Adolesc Health 2001; 29: 298-306.
62. Chen G, Gully SM, Eden D. Validation of a new general self-efficacy scale. Org Res Methods 2001; 4: 62-83.
63. Polit DF, Hungler BP. Nursing Research Principles and Methods, 6th edn. 1999, Lippincott, New York.
64. Jutras S, Veilleux F. Informal caregiving: Correlates of perceived burden. Can J Aging 1991; 10: 40-55.
65. Maddox M, Dunn SV, Pretty LE. Psychosocial recovery following ICU: experiences and influences upon discharge to the community. Intensive Crit Care Nurs 2001; 17: 6-15.
66. Scott G, Whyler N, Grant G. A study of family carers of people with a life-threatening illness 1: The carers' needs analysis. Int J Palliative Nurs 2001; 7: 290-7.
67. Van Kesteren RG, Velthuis B, van Leyden LW. Psychosocial problems arising from home ventilation. Am J Phys Med Rehabil 2001; 80: 439-46.