Determining the costs of families' support networks following a child's cancer diagnosis

Cancer Nursing

Volumn 36, Issue 2, 2013, Pages

  Tsimicalis, Argerie ^a   Stevens, Bonnie ^b,f   Ungar, Wendy J ^c,f   Greenberg, Mark ^d,f,g,h   McKeever, Patricia ^b,i   Agha, Mohammad ^c   Guerriere, Denise ^c   Barr, Ronald ^h,j   Naqvi, Ahmed ^d,g   Moineddin, Rahim ^e  

^a Och Spine at New York Presbyterian Hospitals   (United States)

^b UNIVERSITY OF TORONTO   (Canada)

^c Management and Evaluation ^*

^d Faculty of Medicine   (Canada)

^e UNIVERSITY OF TORONTO   (Canada)

^f Research Institute   (Canada)

^g HOSPITAL FOR SICK CHILDREN   (Canada)

^h PEDIATRIC ONCOLOGY GROUP OF ONTARIO   (Canada)

ⁱ University of Toronto   (Canada)

^j MCMASTER UNIVERSITY   (Canada)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CANCER DIAGNOSIS; CHILD HOSPITALIZATION; COST OF ILLNESS; FAMILY; FEMALE; FINANCIAL MANAGEMENT; HEALTH CARE COST; HUMAN; MALE; MULTIPLE REGRESSION; NORMAL HUMAN; PRIORITY JOURNAL; PROSPECTIVE STUDY; QUALITATIVE ANALYSIS; SUPPORT GROUP; TIME MANAGEMENT;

EID: 85027923597     PISSN: 0162220X     EISSN: 15389804     Source Type: Journal    
DOI: 10.1097/NCC.0b013e3182551562     Document Type: Article

References (58)

1. Woodgate RL. Social support in children with cancer: a review of the literature. J Pediatr Oncol Nurs. 1999;16(4):201-213.
2. Patterson JM, Holm KE, Gurney JG. The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psychooncology. 2004;13(6):390-407.
3. Miedema B, Hamilton R, Fortin P, Easley J, Matthews M. "You can only take so much, and it took everything out of me": coping strategies used by parents of children with cancer. Palliat Support Care. 2010; 8(2):197-206.
4. Mercer M, Ritchie JA. Tag team parenting of children with cancer. J Pediatr Nurs. 1997;12(6):331-341.
5. Untalan FF, Woodruff K, Liao M, Hardy C. Stressors associated with Pacific Islands children diagnosed with cancer and severe blood disorders. J Pediatr Oncol Nurs. 2004;21(1):40-50.
6. Rocha-Garcia A, Hernandez-Pena P, Ruiz-Velazco S, Avila-Burgos L, Marin-Palomares T, Lazcano-Ponce E. Out-of-pocket expenditures during hospitalization of young leukemia patients with state medical insurance in two Mexican hospitals [in Spanish]. Salud Publica Mex. 2003;45(4):285-292.
7. Ow R. Burden of care and childhood cancer: experiences of parents in an Asian context. Health Soc Work. 2003;28(3):232-240.
8. Leonard B, Brust JD, Sapienza JJ. Financial and time costs to parents of severely disabled children. Public Health Rep. 1992;107(3):302-312.
9. Hodapp RM, Dykens EM, Masino LL. Families of children with Prader- Willi syndrome: stress-support and relations to child characteristics. J Autism Dev Disord. 1997;27(1):11-24.
10. Heyman J, Kidman R. HIV/AIDS, declining family resources and the community safety net. AIDS Care. 2009;21(S1):34-42.
11. Case P. Social opportunity in the face of cancer: understanding the burden of the extended caregiver network. Illn Crisis Loss. 2006;14(4): 299-318.
12. Abernethy A, Burns C, Wheeler J, Currow D. Defining distinct caregiver subpopulations by intensity of end-of-life provided. Palliat Med. 2009; 23(1):66-79.
13. Tsimicalis A, Stevens B, Ungar WJ, et al. A prospective study to determine the costs incurred by families of children newly diagnosed with cancer in Ontario. Psychooncology. In press.
14. Hodgson T, Meiners M. Cost-of-illness methodology: a guide to current practices and procedures. Milbank Q. 1982;60(3):429-462.
15. Jacobs P, McDermott S. Family caregiver costs of chronically ill and handicapped children: method and literature review. Public Health Rep. 1989;104(2):158-163.
16. Brouwer W, Rutten F, Koopmanschap M. Costing in economic evaluations. In: Drummond M, McGuire A, eds. Economic Evaluation in Health Care: Merging Theory With Practice. Oxford: Oxford University Press; 2001:68-93.
17. Guerriere DN, Ungar WJ, Corey M, et al. Evaluation of the ambulatory and home care record: agreement between self-reports and administrative data. Int J Technol Assess Health Care. 2006;22(2):203-210.
18. Guerriere DN, Wong AYM, Croxford R, Leong V, McKeever P, Coyte PC. Costs and determinants of publicly- and privately-financed homebased health care. Health Soc Care Community. 2007;16(2):203-210.
19. McGillion MH, Croxford R, Watt-Watson J, Lefort S, Stevens B, Coyte P. Cost of illness for chronic stable angina patients enrolled in a selfmanagement education trial. Can J Cardiol. 2008;24(10):759-764.
20. Tsimicalis A, Stevens B, Ungar WJ, McKeever P, Greenberg M. The cost of childhood cancer from the family's perspective: a critical review. Pediatr Blood Cancer. 2011;56(5):707-717.
21. Cope SF, Ungar WJ, Glazier RH. Socioeconomic factors and asthma control in children. Pediatr Pulmonol. 2008;43(8):745-752.
22. Driving costs. 2007. http://www.ama.ab.ca/images/images-pdf/2007-04- 27DrivingCostsBrochure2007.pdf. Accessed March 5, 2008.
23. Statistics Canada. Family Income (7) and Economic Family Structure (4) for the Economic Families in Private Households of Canada, Provinces, Territories, Census Metropolitan Areas and Census Agglomerations, 2005V20% Sample Data HTML Data Table. 2008.
24. Guerriere DN, Zagorski B, Fassbender K, Masucci L, Librach L, Coyte PC. Cost variations in ambulatory and home-based palliative care. Palliat Med. 2010;24:523-532.
25. Wilson LS, Moskowitz JT, Acree M, et al. The economic burden of home care for children with HIV and other chronic illness. Am J Public Health. 2005;95(8):1445-1451.
26. Stremler R, Dhukai Z, Wong L, Young M, Parshuram C. Sleep, sleepiness, fatigue and psychological outcomes in parents with a hospitalized critically ill child. Sleep. 2008;31:Abstract supplement A312.
27. Barr RD, Furlong W, Horsman JR, Feeny DH, Torrance GW, Weitzman S. The monetary costs of childhood cancer to the families of patients. Int J Oncol. 1996;8:933-940.
28. Anderson D, Dumont S, Jacobs P, Azzaria L. The personal costs of caring for a child with a disability: a review of the literature. Public Health Rep. 2007;122(1):3-16.
29. Miles MB, Huberman AM. An Expanded Sourcebook: Qualitative Data Analysis. 2nd ed. Thousand Oaks, CA: Sage Publisher; 1994.
30. Brouwer WBF, van Exel NJA, Tiford JM. Incorporating caregiver and family effects in economic evaluations of child health. In: Ungar WJ, ed. Economic Evaluation in Child Health. Oxford: Oxford University Press; 2010.
31. Shudy M, Lihinie de Almeida M, Ly S, et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics. 2006;118(3):S203-S218.
32. Pelham W, Foster E, Robb J. The economic impact of attention-deficit/ hyperactivity disorder in children and adolescents. J Pediatr Psychol. 2007; 32(6):711-727.
33. Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J. Unmeasured costs of a child's death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. J Clin Oncol. 2011;29(8):1007-1013.
34. Williams AM, Eby JA, Crooks VA, et al. Canada's compassionate care benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care? BMC Public Health. 2011; 18(11):335.
35. McGrath P, Paton MA, Huff N. Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience. Scand J Caring Sci. 2004;18(4):358-367.
36. Clarke JN. Mother's home healthcare: emotion work when a child has cancer. Cancer Nurs. 2006;29(1):58-64.
37. Eiser C, Upton P, Eiser C, Upton P. Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev. 2007;33(4): 455-459.
38. Heath JA, Lintuuran RM, Rigguto G, Tikotlian N, McCarthy M. Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol. 2006;23:439-448.
39. Callery P. Paying to participate: financial, social and personal costs to parents of involvement in their children's care in hospital. J Adv Nurs. 1997;25(4):746-752.
40. Charlebois S, Bouchard L. "The worst experience": the experience of grandparents who have a grandchild with cancer. Can Oncol Nurs J. 2007;17(1):26.
41. Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics. 2004;114(1): 79-85.
42. Lansky SB, Cairns NU, Clark GM, Lowman J, Miller L, Trueworthy R. Childhood cancer: nonmedical costs of the illness. Cancer. 1979; 43(1):403-408.
43. Akobundu E, Ju J, Blatt L, Mullins CD. Cost-of-illness studies: a review of current methods. Pharmacoeconomics. 2006;24(9):869-890.
44. Clabaugh G, Ward MM. Cost-of-illness studies in the United States: a systematic review of methodologies used for direct cost. Value Health. 2008;11(1):13-21.
45. Stone PW, Chapman RH, Sandberg EA, Liljas B, Neumann PJ. Measuring costs in cost-utility analyses. Variations in the literature. Int J Technol Assess Health Care. 2000;16(1):111-124.
46. Kazak AE. Comprehensive care for children with cancer and their families: a social ecological framework guiding research, practice, and policy. Child Serv. 2001;4(4):217-233.
47. Hinds PS, Feetham SL, Kelly KP. The "family factor" knowledge needed in oncology research cancer nursing. Cancer Nurs. 2012;35(1):1-2.
48. Hagedoorn M, Kreicbergs U, Appel C. Coping with cancer: the perspective of patients' relatives. Acta Oncol. 2011;50(2):205-211.
49. Findler L. Support behind the scenes: attitudes and practice of pediatricians and nurses with grandparents of sick children. Fam Community Health. 2008;31(4):317-325.
50. Mitschke DB. Cancer in the family: review of the psychosocial perspectives of patients and family members. J Fam Soc Work. 2008; 11(2):166-184.
51. Youngmee K, Wellisch DK, Spillers RL. Effects of psychological distress on quality of life of adult daughters and their mothers with cancer. Psychooncology. 2008;17:1129-1136.
52. Chien L, Chu H, Guo J, et al. Caregiver support groups in patients with dementia: a meta-analysis. Int J Geriatr Psychiatry. 2011;26:1089-1098.
53. Ell K. Social networks, social support and coping with serious illness: the family connection. Soc Sci Med. 1996;42(2):173-183.
54. Bultz BD, LE C. Emotional distress: the sixth vital sign-future directions in cancer care. Psychooncology. 2006;2006(15):2.
55. Cantrell MA. Health-related quality of life in childhood cancer: state of the science. Oncol Nurs Forum. 2007;34(1):103-111.
56. Peter E, Spalding K, Kenny N, Conrad P, McKeever P, Macfarlane A. Neither seen nor heard: children and homecare policy in Canada. Soc Sci Med. 2007;64(8):1624-1635.
57. Maxwell J, Rosell S, Forest P-G. Giving citizens a voice in healthcare policy in Canada. BMJ. 2003;326(7397):1031-1033.
58. Thurston W, MacKean G, Vollman A, et al. Public participation in regional health policy: a theoretical framework. Health Policy. 2005; 73(3):237-252.