Caregiving process and caregiver burden: Conceptual models to guide research and practice

BMC Pediatrics

Volumn 4, Issue , 2004, Pages

  Raina, Parminder ^a,b   O'Donnell, Maureen ^c   Schwellnus, Heidi ^a   Rosenbaum, Peter ^a,b   King, Gillian ^a,e   Brehaut, Jamie ^d   Russell, Dianne ^a,b   Swinton, Marilyn ^b   King, Susanne ^a,b   Wong, Micheline ^c   Walter, Stephen D ^a,b   Wood, Ellen ^f  

^a MCMASTER UNIVERSITY   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

^c UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^d OTTAWA HOSPITAL RESEARCH INSTITUTE   (Canada)

^e THAMES VALLEY CHILDREN S CENTRE   (Canada)

^f DALHOUSIE UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CAREGIVER; CHILD; CHILD BEHAVIOR; CHILD CARE; CLINICAL PRACTICE; CLINICAL RESEARCH; COPING BEHAVIOR; DEVELOPMENTAL DISORDER; DISEASE SEVERITY; GERIATRICS; HEALTH CARE; HUMAN; PARENT; PARENTAL BEHAVIOR; PEDIATRICS; PRACTICE GUIDELINE; PSYCHOLOGICAL ASPECT; RESPONSIBILITY; REVIEW; SELF ESTEEM; SOCIAL SUPPORT; WELLBEING;

ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CHILD; DISABLED CHILDREN; HUMANS; MODELS, PSYCHOLOGICAL; PARENTS; STRESS, PSYCHOLOGICAL;

EID: 2642564546     PISSN: 14712431     EISSN: None     Source Type: Journal    
DOI: 10.1186/1471-2431-4-1     Document Type: Review

References (70)

1. Bax M: Terminology and classification of cerebral palsy. Developmental Medicine and Child Neurology 1964, 6:297.
2. Rosen MG, Dickinson JC: The incidence of cerebral palsy. American Journal ob Obstetrics and Oncology 1992, 167:423.
3. Dzienkowski RC, Smith KK, Dillow KA, Yucha CB: Cerebral palsy: a comprehensive review. Nurse Pract 1996, 21:45-4, 57.
4. Blacher J: Sequential stages of parental adjustment to the birth of a child with handicaps: fact or artifact? Ment Retard 1984, 22:55-68.
5. Breslau N, Staruch KS, Mortimer E.A.,Jr.: Psychological distress in mothers of disabled children. Am J Dis Child 1982, 136:682-686.
6. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ: Profiles in caregiving; The unexpected career San Diego, Academic Press, Inc.; 1995.
7. Dumas D, Peron J, Peron Y: Marriage and conjugal life in Canada. Volume 91-534E. Ottawa, Statistics Canada; 1992.
8. Eicher PS, Batshaw ML: Cerebral palsy. Pediatr Clin North Am 1993, 40:537-551.
9. Sloper P, Turner S: Risk and resistance factors in the adaptation of parents of children with severe physical disability. J Child Psychol Psychiatry 1993, 34:167-188.
10. Wallander JL, Varni JW, Babani L, DeHaan CB, Wilcox KT, Banis HT: The social environment and the adaptation of mothers of physically handicapped children. J Pediatr Psychol 1989, 14:371-387.
11. Cadman D, Rosenbaum P, Boyle M, Offord DR: Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Pediatrics 1991, 87:884-889.
12. McKinney B, Peterson RA: Predictors of stress in parents of developmentally disabled children. J Pediatr Psychol 1987, 12:133-150.
13. Dyson LL: Response to the presence of a child with disabilities: parental stress and family functioning over time. Am J Ment Retard 1993, 98:207-218.
14. Gowen JW, Johnson-Martin N, Goldman BD, Appelbaum M: Feelings of depression and parenting competence of mothers of handicapped and nonhandicapped infants: a longitudinal study. Am J Ment Retard 1989, 94:259-271.
15. Kazak AE, Marvin RS: Differences, difficulties and adaptation: stress and social networks in families with a handicapped child. Family Relations 1984, 33:67-76.
16. Dunst CJ, Trivette CM, Cross AH: Mediating influences of social support: personal, family, and child outcomes. Am J Ment Defic 1986, 90:403-417.
17. Friedrich WN, Friedrich WL: Psychosocial assets of parents of handicapped and nonhandicapped children. Am J Ment Defic 1981, 85:551-553.
18. Kitagawa EM, Hauser PM: Differential mortality in the United States: A study in socioeconomic epidemiology Cambridge, MA, Harvard University Press; 1973.
19. Haan MN, Kaplan GA, Syme SL: Socioeconomic status and health: old observations and new thoughts. Pathways to health: the role of social factors Edited by: BunkerJP, GombyDS and KehrerBH. Mento Park, CA, Henry Kaiser Family Foundation; 1989:76-135.
20. Freeman HE: Social factors iin the chronic disease. Handbook of medical sociology Edited by: LevineS, ReederLG and FreemanHE. Englewood Cliffs, NJ, Prentice-Hall; 1972:63-107.
21. Rogot E, Sorlie PE, Johnson NJ, Glover CS, Treasure DWA: A mortality study of one million persons by demographic, social and economic factors. Volume No. 88-2896. Edited by: USDepartment of Helath and Human Services. Bethesda, MD, National Insittutes of Health; 1981.
22. Schulz R, O'Brien AT, Bookwala J, Fleissner K: Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist 1995, 35:771-791.
23. Mittelman MS, Ferris SH, Shulman E, Steinberg G, Ambinder A, Mackell JA, Cohen J: A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist 1995, 35:792-802.
24. King G, King S, Rosenbaum P, goffin R: Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. Journal of pediatric psychology 1999, 24:41-53.
25. Beckman PJ: Influence of selected child characteristics on stress in families of handicapped infants. Am J Ment Defic 1983, 88:150-156.
26. Friedrich WN, Wilturner LT, Cohen DS: Coping resources and parenting mentally retarded children. Am J Ment Defic 1985, 90:130-139.
27. Frey KS, Greenberg MT, Fewell RR: Stress and coping among parents of handicapped children: a multidimensional approach. Am J Ment Retard 1989, 94:240-249.
28. Sjobu L: Parents of children with cerebral palsy in Nordland (county in the north of Norway); factors connected to their quality of life and coping of the circumstances around the handicapped child. Arctic Med Res 1994, 53 Suppl 1:30-31.
29. Saddler AL, Hillman SB, Benjamins D: The influence of disabling condition visibility on family functioning. J Pediatr Psychol 1993, 18:425-439.
30. Leonard BJ, Johnson AL, Brust JD: Caregivers of children with disabilities: a comparison of those managing "OK" and those needing more help. Child Health Care 1993, 22:93-105.
31. Lambrenos K, Weindling AM, Calam R, Cox AD: The effect of a child's disability on mother's mental health. Arch Dis Child 1996, 74:115-120.
32. Trute B, Hiebert-Murphy D: Family adjustment to childhood developmental disability: a measure of parent appraisal of family impacts. J Pediatr Psychol 2002, 27:271-280.
33. Skaff MM, Pearlin LI, Mullan JT: Transitions in the caregiving career: effects on sense of mastery. Psychol Aging 1996, 11:247-257.
34. Krause N: Stressors in salient social roles and well-being in later life. Journals of Gerontology 1994, 49:137-148.
35. Pearlin LI, Lieberman MA, Menaghan EG, Mullan JT: The stress process. J Health Soc Behav 1981, 22:337-356.
36. Ross CE, Mirowsky J: Explaining the social patterns of depression: control and problem solving-or support and talking? J Health Soc Behav 1989, 30:206-219.
37. Skaff MM, Pearlin LI: Caregiving: role engulfment and the loss of self. Gerontologist 1992, 32:656-664.
38. Krause N: Perceived health problems, formal/informal support, and life satisfaction among older adults. J Gerontol 1990, 45:S193-S205.
39. Kiecolt-Glaser JK, Dura JR, Speicher CE, Trask OJ, Glaser R: Spousal caregivers of dementia victims: longitudinal changes in immunity and health. Psychosom Med 1991, 53:345-362.
40. Kronenberger WG, Thompson R.J.,Jr.: Psychological adaptation of mothers of children with spina bifida: association with dimensions of social relationships. J Pediatr Psychol 1992, 17:1-14.
41. Fisher L, Ransom DC: An empirically derived typology of families: I. Relationships with adult health. Fam Process 1995, 34:161-182.
42. Evans RL, Bishop DS, Ousley RT: Providing care to persons with physical disability. Effect on family caregivers. Am J Phys Med Rehabil 1992, 71:140-144.
43. Ransom DC, Fisher L, Terry HE: The California Family Health Project: II. Family world view and adult health. Fam Process 1992, 31:251-267.
44. Friedrich WN: Predictors of the coping behavior of mothers of handicapped children. J Consult Clin Psychol 1979, 47:1140-1141.
45. Erickson M, Upshur CC: Caretaking burden and social support: comparison of mothers of infants with and without disabilities. Am J Ment Retard 1989, 94:250-258.
46. Barakat LP, Linney JA: Children with physical handicaps and their mothers: the interrelation of social support, maternal adjustment, and child adjustment. J Pediatr Psychol 1992, 17:725-739.
47. Dutton DB, Levine S: Socioeconomic status and health: Overview, methodology critique, and reformation. Pathways to health: The role of social factors Edited by: BunkerJP, GombyDS and KehrerBH. Menlo Park, CA, Kaiser Family Foundation; 1989:29-69.
48. Wallander JL, Varni JW, Babani L, Banis HT, DeHaan CB, Wilcox KT: Disability parameters, chronic strain, and adaptation of physically handicapped children and their mothers. J Pediatr Psychol 1989, 14:23-42.
49. Pearlin LI, Mullan JT, Semple SJ, Skaff MM: Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990, 30:583-594.
50. Caserta MS, Lund DA, Wright SD: Exploring the Caregiver Burden Inventory (CBI): further evidence for a multidimensional view of burden. Int J Aging Hum Dev 1996, 43:21-34.
51. Morrissey E, Becker J, Rubert MP: Coping resources and depression in the caregiving spouses of Alzheimer patients. Br J Med Psychol 1990, 63 ( Pt 2):161-171.
52. Sisk RJ: Caregiver burden and health promotion. Int J Nurs Stud 2000, 37:37-43.
53. Blackman JA, Levine MD: A follow-up study of preschool children evaluated for developmental and behavioral problems. Clin Pediatr (Phila) 1987, 26:248-252.
54. Pless IB, Pinkerton P: Chronic Childhood disorders: Promoting patterns of development Chicago; 1975.
55. Silver EJ, Westbrook LE, Stein RE: Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 1998, 23:5-15.
56. Palfrey JS, Walker DK, Butler JA, Singer JD: Patterns of response in families of chronically disabled children: an assessment in five metropolitan school districts. Am J Orthopsychiatry 1989, 59:94-104.
57. King GA, King SM, Rosenbaum PL: How mothers and fathers view professional caregiving for children with disabilities. Dev Med Child Neurol 1996, 38:397-407.
58. Quittner AL, Glueckauf RL, Jackson DN: Chronic parenting stress: moderating versus mediating effects of social support. J Pers Soc Psychol 1990, 59:1266-1278.
59. Musil CM: Health, stress, coping, and social support in grandmother caregivers. Health Care Women Int 1998, 19:441-455.
60. MaloneBeach EE, Zarit SH: Dimensions of social support and social conflict as predictors of caregiver depression. Int Psychogeriatr 1995, 7:25-38.
61. Caplan G: Mastery of stress: psychosocial aspects. Am J Psychiatry 1981, 138:413-420.
62. Brown GW, Andrews B, Harris T, Adler Z, Bridge L: Social support, self-esteem and depression. Psychol Med 1986, 16:813-831.
63. Robinson K: The relationships between social skills, social support, self-esteem and burden in adult caregivers. J Adv Nurs 1990, 15:788-795.
64. Schill T, Beyler J, Morales J, Ekstrom B: Self-defeating personality and perceptions of family environment. Psychol Rep 1991, 69:744-746.
65. Hobfoll SE, Walfisch S: Coping with a threat to life: a longitudinal study of self-concept, social support, and psychological distress. Am J Community Psychol 1984, 12:87-100.
66. Mowat J, Laschinger HK: Self-efficacy in caregivers of cognitively impaired elderly people: a concept analysis. J Adv Nurs 1994, 19:1105-1113.
67. Scharlach AE, Boyd SL: Caregiving and employment: results of an employee survey. Gerontologist 1989, 29:382-387.
68. Ware J.E.,Jr., Sherbourne CD: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992, 30:473-483.
69. Hayduk LA: Structural Equation Modeling with LISREL Baltimore, The Johns Hopkins University Press; 1987.
70. Anderson JC, Gerbing DW: Structural equation modeling in practice. Psychological Bulletin 1988, 103:411-123.