Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study

American Journal of Public Health

Volumn 101, Issue 12, 2011, Pages 2308-2316

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

^a OTTAWA HOSPITAL RESEARCH INSTITUTE   (Canada)

^b STATISTICS CANADA   (Canada)

^c UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^d MCGILL UNIVERSITY   (Canada)

^e MCMASTER UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CANADA; CAREGIVER; CHILD; CHILD CARE; CHRONIC DISEASE; DEPRESSION; FAMILY; FEMALE; HEALTH STATUS; HUMAN; LONGITUDINAL STUDY; MALE; PRESCHOOL CHILD;

ADOLESCENT; ADULT; CANADA; CAREGIVERS; CHILD; CHILD CARE; CHILD, PRESCHOOL; CHRONIC DISEASE; DEPRESSION; FAMILY; FEMALE; HEALTH STATUS; HUMANS; LONGITUDINAL STUDIES; MALE;

EID: 81555226631     PISSN: 00900036     EISSN: 15410048     Source Type: Journal    
DOI: 10.2105/AJPH.2011.300298     Document Type: Article

References (55)

1. Breslau N, Staruch K, Mortimer E. Psychological distress in mothers of disabled children. Am J Dis Child. 1982;136(8):682-686. (Pubitemid 12096955)
2. Gowen J, Johnson-Martin N, Goldman B, Appelbaum M. Feelings of depression and parenting competence of mothers of handicapped and nonhandicapped infants: a longitudinal study. Am J Ment Retard. 1989;94(3):259-271. (Pubitemid 19278949)
3. Smyth-Staruch K, Breslau N, Weitzman M, Gortmaker S. Use of health services by chronically ill and disabled children. Med Care. 1984;22(4):310-328. (Pubitemid 14114331)
4. Ireys HT, Anderson G, Shaffer T, Neff J. Expenditures for care of children with chronic illnesses enrolled in Washington State Medicaid program, fiscal year 1993. Pediatrics. 1997;100(2 pt 1):197-204. (Pubitemid 27328196)
5. Burton P, Phipps S. Economic costs of caring for children with disabilities in Canada. Can Public Policy. 2009;35(3):269-290.
6. 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(1):77-86. (Pubitemid 38159431)
7. The Health of Canada's Children: A CICH Profile. 3rd ed. Ottawa, Ontario, Canada: Canadian Institute of Child Health; 2000.
8. 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, Canada: Breton Books; 1997.
9. 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(2):e182-e191.
10. Parish SL, Cloud JM. Financial well-being of young children with disabilities and their families. Soc Work. 2006;51(3):223-232. (Pubitemid 44464854)
11. Dumas J, Péron Y. Marriage and Conjugal Life in Canada. Ottawa, Ontario: Statistics Canada, Demography Division; 1992. Catalogue 91-543E.
12. Eicher PS, Batshaw ML. Cerebral palsy. Pediatr Clin North Am. 1993;40(3):537-551. (Pubitemid 23159436)
13. Family Support for Children with Disabilities Act, Statutes of Alberta chapter F-5.3 (2004).
14. Rosenbaum P, King S, Law M, Evans JS. Familycentered service: a conceptual framework and research review. Phys Occup Ther Pediatr. 1998;18(1):1-20. (Pubitemid 28401887)
15. Schulz R, Beach S. Caregiving as a risk factor for mortality: the Caregiver Health Effects study. JAMA. 1999;282(23):2215-2219. (Pubitemid 30002964)
16. Chappell N. Social Support and Aging. Toronto, Ontario: Butterworths; 1992.
17. Beckman PJ. Influence of selected child characteristics on stress in families of handicapped infants. Am J Ment Defic. 1983;88(2):150-156. (Pubitemid 13006538)
18. McKinney B, Peterson R. Predictors of stress in parents of developmentally disabled children. J Pediatr Psychol. 1987;12(1):133-150. (Pubitemid 17050592)
19. Dyson L, Edgar K, Crnic K. Psychological predictors of adjustment by siblings of developmentally disabled children. Am J Ment Retard. 1989;94(3):292-302. (Pubitemid 19278953)
20. Frey KS, Greenberg MT, Fewell RR. Stress and coping among parents of handicapped children: a multidimensional approach. Am J Ment Retard. 1989;94(3):240-249. (Pubitemid 19278947)
21. Brehaut JC, Kohen DE, Garner RE, et al. Health among caregivers of children with health problems: findings from a Canadian population-based study. Am J Public Health. 2009;99(7):1254-1262.
22. Goode KT, Haley W, Roth D, Ford G. Predicting longitudinal changes in caregiver physical and mental health: a stress process model. Health Psychol. 1998;17(2):190-198. (Pubitemid 28257320)
23. Haley WE, Levine EG, Brown SL, Bartolucci AA. Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychol Aging. 1987;2(4):323-330.
24. Haley WE, Roth DL, Coleton MI, et al. Appraisal, coping, and social support as mediators of well-being in Black and White family caregivers of patients with Alzheimer's disease. J Consult Clin Psychol. 1996;64(1):121-129. (Pubitemid 26076073)
25. Magni G, Carli M, De Leo D, Tshilolo M, Zanesco L. Longitudinal evaluations of psychological distress in parents of children with malignancies. Acta Paediatr Scand. 1986;75(2):283-288. (Pubitemid 16137657)
26. Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability. Am J Ment Retard. 2001;106(3):265-286.
27. Schulz RH, Williamson GA. 2-year longitudinal study of depression among Alzheimer's caregivers. Psychol Aging. 1991;6(4):569-578.
28. Vitaliano PP, Russo J, Young HM, Teri L, Maiuro RD. Predictors of burden in spouse caregivers of individuals with Alzheimer's disease. Psychol Aging. 1991;6(3):392-402.
29. Dahlquist LM, Czyzewski DI, Jones CL. Parents of children with cancer: a longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. J Pediatr Psychol. 1996;21(4):541-554. (Pubitemid 26256784)
30. Sawyer M, Antoniou G, Toogood I, Rice M, Baghurst P. Childhood cancer: a 4-year prospective study of the psychological adjustment of children and parents. J Pediatr Hematol Oncol. 2000;22(3):214-220. (Pubitemid 32268305)
31. Northam E, Anderson P, Adler R, Werther G, Warne G. Psychosocial and family functioning in children with insulin-dependent diabetes at diagnosis and one year later. J Pediatr Psychol. 1996;21(5):699-717. (Pubitemid 26361904)
32. Beach SR, Schulz R, Yee J, Jackson S. Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study. Psychol Aging. 2000;15(2):259-271.
33. Lawton M, Brody EM, Saperstein AR. Respite for Caregivers of Alzheimer's Patients: Research and Practice. New York, NY: Springer; 1991.
34. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry. 2002;17(2):184-188. (Pubitemid 34130311)
35. Kramer B. Gain in the caregiving experience: where are we? What next? Gerontologist. 2005;37(2):218-232.
36. Brown SL, Smith DM, Schulz R, et al. Caregiving behavior is associated with decreased mortality risk. Psychol Sci. 2009;20(4):488-494.
37. Statistics Canada, Human Resources Development Canada. National Longitudinal Survey of Children: Overview of Survey Instruments for 1994-1995 Data Collection, Cycle 1. Ottawa, Ontario, Canada: Statistics Canada; 1995.
38. Raina P, O'Donnell M, Schwellnuss H, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004;4:1.
39. 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(6):465-470. (Pubitemid 32124031)
40. 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(1):38-48. (Pubitemid 44133341)
41. 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.
42. Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1(3):385-401.
43. Poulin C, Hand D, Boudreau B. Validity of a 12-item version of the CES-D used in the National Longitudinal Survey of Children and Youth. Chronic Dis Can. 2005;26(2-3):65-72. (Pubitemid 41735848)
44. Jones CJ, Livson N, Peskin H. Paths of psychological health: examination of 40-year trajectories from the intergenerational studies. J Res Pers. 2006;40(1):56-72. (Pubitemid 43055661)
45. Hopman W, Towheed T, Anastassiades T, et al. Canadian normative data for the SF-36 health survey. The Canadian Multicentre Osteoporosis Study Research Group. CMAJ. 2000;163(3):265-271.
46. Schulz R, Hebert RS, Dew MA, et al. Patient suffering and caregiver compassion: new opportunities for research, practice, and policy. Gerontologist. 2007;47(1):4-13.
47. Amirkhanyan AA, Wolf DA. Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity. Gerontologist. 2003;43(6):817-827. (Pubitemid 38049680)
48. Beach C, Croskerry P, Shapiro M. Profiles in patient safety: emergency care transitions. Acad Emerg Med. 2003;10(4):364-367. (Pubitemid 36437795)
49. Ferguson JH. National Institutes of Health Concensus Development Conference Statement: diagnosis and treatment of attention-deficit/hyperactivity disorder (ADHD). J Am Acad Child Adolesc Psychiatry. 2000;39(2):182-193. (Pubitemid 30081961)
50. Harlow SD, Linet MS. Agreement between questionnaire data and medical records: the evidence for accuracy of recall. Am J Epidemiol. 1989;129(2):233-248. (Pubitemid 19046991)
51. Heliovaara 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(2):181-191. (Pubitemid 23092127)
52. Russell K M W, 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(10):2267-2274. (Pubitemid 43673250)
53. ™ 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:2.
54. King G, King S, Rosenbaum P, Goffin R. Familycentered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol. 1999;24(1):41-53. (Pubitemid 29055093)
55. Lach LM, Kohen D, Garner RE, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009;31(8):607-618.