Health among caregivers of children with health problems: Findings from a Canadian population-based study

American Journal of Public Health

Volumn 99, Issue 7, 2009, Pages 1254-1262

  Brehaut, Jamie C ^a,b   Kohen, Dafna E ^b,c   Garner, Rochelle E ^c   Miller, Anton R ^d,e   Lach, Lucyna M ^f   Klassen, Anne F ^g   Rosenbaum, Peter L ^g  

^a OTTAWA HOSPITAL RESEARCH INSTITUTE   (Canada)

^b UNIVERSITY OF OTTAWA   (Canada)

^c STATISTICS CANADA   (Canada)

^d UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^e UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^f MCGILL UNIVERSITY   (Canada)

^g MCMASTER UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CANADA; CAREGIVER; CHILD; CHILD HEALTH; CHILD HEALTH CARE; CHILDHOOD DISEASE; CHRONIC PATIENT; CONTROLLED STUDY; DEPRESSION; FAMILY CENTERED CARE; FAMILY FUNCTIONING; FEMALE; GENERAL CONDITION; HEALTH SERVICE; HUMAN; MAJOR CLINICAL STUDY; MALE; MARRIAGE; PHYSICAL ACTIVITY; POOR GENERAL CONDITION; PRESCHOOL CHILD; SCHOOL CHILD; SOCIAL SUPPORT; ADULT; CHI SQUARE DISTRIBUTION; CHRONIC DISEASE; EDUCATIONAL STATUS; HANDICAPPED CHILD; HEALTH STATUS; INCOME; LONGITUDINAL STUDY; STATISTICAL MODEL;

ADULT; CANADA; CAREGIVERS; CHI-SQUARE DISTRIBUTION; CHILD; CHILD, PRESCHOOL; CHRONIC DISEASE; DISABLED CHILDREN; EDUCATIONAL STATUS; FEMALE; HEALTH STATUS; HUMANS; INCOME; LOGISTIC MODELS; LONGITUDINAL STUDIES; MALE;

EID: 67650710996     PISSN: 00900036     EISSN: 15410048     Source Type: Journal    
DOI: 10.2105/AJPH.2007.129817     Document Type: Article

References (57)

1. Breslau N, Staruch KS, Mortimer EA Jr. Psychological distress in mothers of disabled children. Am J Dis Child. 1982;136:682-686.
2. 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.
3. Ireys HT, Anderson GF, Shaffer TJ, Neff JM. Expenditures for care of children with chronic illnesses enrolled in Washington State Medicaid program, fiscal year 1993. Pediatrics. 1997;100:197-204.
4. Smyth-Staruch K, Breslau N, Weitzman M, Gortmaker S. Use of health services by chronically ill and disabled children. Med Care. 1984;22:310-328.
5. Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 2004;114:e182-e191.
6. Irwin S, Lero D. In Our Way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Young Children With Special Needs-and Potential Remedies. Cape Breton, Nova Scotia: Breton Books; 1997.
7. The Health of Canada's Children: A CICH Profile. Ottawa, Ontario: Canadian Institute of Child Health; 2003.
8. Damiani G, Rosenbaum P, Swinton M, Russell D. Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario. Child Care Health Dev. 2004;30:77-86.
9. Beckman PJ. Influence of selected child characteristics on stress in families of handicapped infants. Am J Ment Defic. 1983;88:150-156.
10. Dyson L, Edgar E, Crnic K. Psychological predictors of adjustment by siblings of developmentally disabled children. Am J Ment Retard. 1989;94:292-302.
11. 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.
12. McKinney B, Peterson RA. Predictors of stress in parents of developmentally disabled children. J Pediatr Psychol. 1987;12:133-150.
13. Canning RD, Harris ES, Kelleher KJ. Factors predicting distress among caregivers to children with chronic medical conditions. J Pediatr Psychol. 1996;21:735-749.
14. 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.
15. 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.
16. Manuel JC. Risk and resistance factors in the adaptation of the mothers of children with juvenile rheumatoid arthritis. J Pediatr Psychol. 2001;26:237-246.
17. Sloper P, Turner S. Risk and resistance factors in the adaptation of parents with children with severe physical disability. J Child Psychol Psychiatry. 1993;34:167-188.
18. Bristol MM, Gallagher JJ, Schopler E. Mothers and fathers of young developmentally disabled and nondisabled boys: adaptation and spousal support. Dev Psychol. 1988;24:441-451.
19. 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.
20. Pless IB. The Epidemiology of Childhood Disorders. New York, NY: Oxford University Press; 1994.
21. Stein R, Westbrook LE, Silver EJ. Comparison of adjustment of school-age children with and without chronic conditions: results from community-based samples. J Dev Behav Pediatr. 1998;19:267-272.
22. King G, King S, Rosenbaum P, Goffin R. Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol. 1999;24:41-53.
23. Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. J Pediatr Psychol. 2003;21:473-484.
24. Quittner AL, Glueckauf RL, Jackson DN. Chronic parenting stress: moderating versus mediating effects of social support. J Pers Soc Psychol. 1990;59:1266-1278.
25. Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626-e636.
26. Thompson RJ Jr, Gil KM, Gustafson KE, et al. Stability and change in the psychological adjustment of mothers of children and adolescents with cystic fibrosis and sickle cell disease. J Pediatr Psychol. 1994;19:171-188.
27. 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.
28. Fisher L, Ransom DC. An empirically derived typology of families: I. Relationships with adult health. Fam Process. 1995;34:161-182.
29. Scharlach AE, Boyd SL. Caregiving and employment: results of an employee survey. Gerontologist. 1989;29:382-387.
30. Children and Youth with Special Needs. Canadian Council on Social Development Web site. Available at: http://www.ccsd.ca/pubs/2001/specialneeds/ specialneeds.pdf. Accessed July 28, 2008.
31. Johnston C. Parent characteristics and parent-child interactions in families of nonproblem children and ADHD children with higher and lower levels of oppositional-defiant behavior. J Abnorm Child Psychol. 1996;24:85-104.
32. Podolski CL, Nigg JT. Parent stress and coping in relation to child ADHD severity and associated child disruptive behavior problems. J Clin Child Psychol. 2001;30:503-513.
33. Cadman D, Boyle MH, Offord DR, et al. Chronic illness and functional limitation in Ontario children: findings of the Ontario Child Health Study. CMAJ. 1986;135:761-767.
34. Pless I, Pinkerton P. Chronic Childhood Disorders: Promoting Patterns of Development. Chicago, IL: Year Book Medical Publishers; 1975.
35. Statistics Canada, Human Resources Development Canada. National Longitudinal Survey of Children: Overview of Survey Instruments for 1994-1995 Data Collection, Cycle 1. Ottawa, Ontario: Statistics Canada; 1995.
36. Stein RE, Bauman LJ, Epstein SG, Gardner JD, Walker DK. How well does the questionnaire for identifying children with chronic conditions identify individual children who have chronic conditions? Arch Pediatr Adolesc Med. 2000;154:447-452.
37. van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M. Definitions and measurements of chronic health conditions in childhood: a systematic review. JAMA. 2007;297:2741-2751.
38. Stein RE, Bauman LJ, Westbrook LE, Coupey SM, Ireys HT. Framework for identifying children who have chronic conditions: the case for a new definition. J Pediatr. 1993;122:342-347.
39. Stein RE, Westbrook LE, Bauman LJ. The Questionnaire for Identifying Children with Chronic Conditions: a measure based on a noncategorical approach. Pediatrics. 1997;99:513-521.
40. Simeonsson RJ, McMillen JS, Huntington GS. Secondary conditions in children with disabilities: spina bifida as a case example. Ment Retard Dev Disabil Res Rev. 2002;9:198-205.
41. Yaruss JS, Quesal RW. Stuttering and the International Classification of Functioning, Disability and Health: an update. J Commun Disord. 2004;37:35-52.
42. McDougall J, King G, de Wit DJ, et al. Chronic physical health conditions and disability among Canadian school-aged children: a national profile. Disabil Rehabil. 2004;26:35-45.
43. Aaronson NK, Visser-Pol E, Leenhouts GH, et al. Telephone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials. J Clin Oncol. 1996;14:984-996.
44. Kohen DE, Brehaut JC, Garner RE, et al. Conceptualizing childhood health problems using survey data: a comparison of key indicators. BMC Pediatr. 2007;7:40.
45. Feeny D, FurlongW, Boyle M, Torrance GW. Multiattribute health status classification systems. Health Utilities Index. Pharmacoeconomics. 1995;7:490-502.
46. Kopec JA, Williams JI, To T, Austin PC. Measuring population health: correlates of the Health Utilities Index among English and French Canadians. Can J Public Health. 2000;91:465-470.
47. Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;2:38-48.
48. Radloff LS. The CES-D Scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1:385-401.
49. Poulin C, Hand D, Boudreau B. Validity of a 12-item version of the CES-D used in the National Longitudinal Study of Children and Youth. Chronic Dis Can. 2005;26:65-72.
50. Byles J, Byrne C, Boyle MH, Offord DR. Ontario Child Health Study: reliability and validity of the general functioning subscale of the McMaster Family Assessment Device. Fam Process. 1988; 27:97-104.
51. Cutrona CE, Russell DW. The provisions of social relationships and adaptation to stress. In: Jones WH, Perlman WH, eds. Advances in Personal Relationships. Greenwich, CT: JAI Press; 1987:37-67.
52. Statistics Canada. 1996 Census: population and dwelling counts. Available at: http://www.statcan.ca/english/census96/tables.htm. Accessed July 28, 2008.
53. Harlow SD, Linet MS. Agreement between questionnaire data and medical records. The evidence for accuracy of recall. Am J Epidemiol. 1989;129:233-248.
54. Heliövaara M, Aromaa A, Klaukka T, Knekt P, Joukamaa M, Impivaara O. Reliability and validity of interview data on chronic diseases: the Mini-Finland Health Survey. J Clin Epidemiol. 1993;46:181-191.
55. Russell KMW, Hudson M, Long A, Phipps S. Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer. 2006;106:2267-2274.
56. Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQLTM 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:2.
57. Lach LM, Kohen DE, Garner RE, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009;31(8):607-618.