Parental perspectives on the financial impact of caring for a child with CKD

American Journal of Kidney Diseases

Volumn 65, Issue 3, 2015, Pages 384-393

  Medway, Meredith ^a,b   Tong, Allison ^a,b   Craig, Jonathan C ^a,b   Kim, Siah ^b   Mackie, Fiona ^c   McTaggart, Steven ^d   Walker, Amanda ^e   Wong, Germaine ^a,b  

^a UNIVERSITY OF SYDNEY   (Australia)

^b CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^c SYDNEY CHILDREN'S HOSPITAL   (Australia)

^d ROYAL CHILDREN'S HOSPITAL   (Australia)

^e ROYAL CHILDREN'S HOSPITAL   (Australia)

Author keywords

Australia; caregiving; chronic kidney disease (CKD); economic; end stage kidney disease (ESKD); financial; health care expenditures; medical costs; Pediatric; qualitative research; quality of life (QoL); socioeconomic status (SES); workforce participation

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; BASIC NEEDS; BUDGET; CHILD; CHRONIC KIDNEY DISEASE; CLINICAL ARTICLE; CONTROLLED STUDY; COPING BEHAVIOR; FAMILY; FEMALE; FINANCIAL MANAGEMENT; HOME DIALYSIS; HUMAN; MALE; PARENT; PERITONEAL DIALYSIS; QUALITY OF LIFE; RESPONSIBILITY; RETURN TO WORK; SEMI STRUCTURED INTERVIEW; SURVIVAL; CAREGIVER; ECONOMICS; HEALTH CARE COST; MIDDLE AGED; PRESCHOOL CHILD; QUESTIONNAIRE; RENAL INSUFFICIENCY, CHRONIC; TRENDS; YOUNG ADULT;

ADOLESCENT; ADULT; CAREGIVERS; CHILD; CHILD, PRESCHOOL; FEMALE; HEALTH EXPENDITURES; HUMANS; MALE; MIDDLE AGED; PARENTS; QUESTIONNAIRES; RENAL INSUFFICIENCY, CHRONIC; YOUNG ADULT;

EID: 84924065814     PISSN: 02726386     EISSN: 15236838     Source Type: Journal    
DOI: 10.1053/j.ajkd.2014.07.019     Document Type: Article

References (29)

1. S.P. McDonald, and J.C. Craig Long-term survival of children with end-stage renal disease N Engl J Med 350 26 2004 2654 2662
2. J.W. Groothoff, M.P. Gruppen, and M. Offringa Mortality and causes of death of end-stage renal disease in children: a Dutch cohort study Kidney Int 61 2 2002 621 629
3. A.C. Gerson, A. Wentz, and A.G. Abraham Health-related quality of life of children with mild to moderate chronic kidney disease Pediatrics 125 2 2010 e349 e357
4. A.M. McKenna, L.E. Keating, A. Vigneux, S. Stevens, A. Williams, and D.F. Geary Quality of life in children with chronic kidney disease - patient and caregiver assessments Nephrol Dial Transplant 21 7 2006 1899 1905
5. S. Goldstein, N. Graham, T. Burwinkle, B. Warady, R. Farrah, and J. Varni Health-related quality of life in pediatric patients with ESRD Pediatr Nephrol 21 6 2006 846 850
6. G. Hidalgo, D.K. Ng, and M. Moxey-Mims Association of income level with kidney disease severity and progression among children and adolescents with CKD: a report from the Chronic Kidney Disease in Children (CKiD) Study Am J Kidney Dis 62 6 2013 1087 1094
7. S.L. Furth, P.P. Garg, A.M. Neu, W. Hwang, B.A. Fivush, and N.R. Powe Racial differences in access to the kidney transplant waiting list for children and adolescents with end-stage renal disease Pediatrics 106 4 2000 756 761
8. M.L. Minnick, S. Boynton, J. Ndirangu, and S. Furth Sex, race, and socioeconomic disparities in kidney disease in children Semin Nephrol 30 1 2010 26 32
9. A. Tong, A. Lowe, P. Sainsbury, and J. Craig Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study Child Care Health Dev 36 4 2010 549 557
10. T.-C. Tsai, S. Liu, J. Tsai, and L. Chou Psychosocial effects on caregivers for children on chronic peritoneal dialysis Kidney Int 70 11 2006 1983 1987
11. A. Friedman The broader burden of end-stage renal disease on children and their families Kidney Int 70 11 2006 1893 1894
12. D.B. Nicholas Meanings of maternal caregiving: children with end stage renal disease Qual Health Res 9 4 1999 468 478
13. S.R. Smith, and E. Soliday The effects of parental chronic kidney disease on the family Family Relations 50 2 2001 171 177
14. B. Essue, G. Wong, J. Chapman, Q. Li, and S. Jan How are patients managing with the costs of care for chronic kidney disease in Australia? A cross-sectional study BMC Nephrol 14 1 2013 5
15. A. Tong, A. Lowe, P. Sainsbury, and J.C. Craig Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies Pediatrics 121 2 2008 349 360
16. Y.-H. Jeon, B. Essue, S. Jan, R. Wells, and J.A. Whitworth Economic hardship associated with managing chronic illness: a qualitative inquiry BMC Health Serv Res 9 1 2009 182
17. L. Yen, I. McRae, Y.H. Jeon, B. Essue, and P. Herath The impact of chronic illness on workforce participation and the need for assistance with household tasks and personal care by older Australians Health Soc Care Comm 19 5 2011 485 494
18. K. Charmaz 'Discovering' chronic illness: using grounded theory Soc Sci Med 30 11 1990 1161 1172
19. J.M. Corbin, and A. Strauss Grounded theory research: procedures, canons, and evaluative criteria Qual Sociol 13 1 1990 3 21
20. B. Essue, P. Kelly, M. Roberts, S. Leeder, and S. Jan We can't afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia J Health Serv Res Policy 16 4 2011 226 231
21. J.A. Heath, R.M. Lintuuran, G. Rigguto, N. Tikotlian, and M. McCarthy Childhood cancer: its impact and financial costs for Australian families J Pediatr Hematol Oncol 23 5 2006 439 448
22. A. Lukemeyer, M.K. Meyers, and T. Smeeding Expensive children in poor families: out-of-pocket expenditures for the care of disabled and chronically ill children in welfare families J Marriage Fam 62 2 2000 399 415
23. G. Worley, L.R. Rosenfeld, and J. Lipscomb Financial counseling for families of children with chronic disabilities Dev Med Child Neurol 33 8 1991 679 689
24. A. Bougea, C. Darviri, and E. Alexopoulos A systematic review of randomized controlled interventions for parents' distress in pediatric leukemia ISRN Oncol 2011 2011 959247
25. G.M. Kieckhefer, C.M. Trahms, S.S. Churchill, L. Kratz, N. Uding, and N. Villareale A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions Matern Child Health J 18 3 2014 563 574
26. S.M. Neufeld, B. Query, and J.E. Drummond Respite care users who have children with chronic conditions: are they getting a break? J Pediatr Nurs 16 4 2001 234 244
27. B.R. Sherman Impact of home-based respite care on families of children with chronic illnesses Child Health Care 24 1 1995 33 45
28. J. Dobrof, A. Dolinko, E. Lichtiger, J. Uribarri, and I. Epstein Dialysis patient characteristics and outcomes: the complexity of social work practice with the end stage renal disease population Soc Work Health Care 33 3-4 2002 105 128
29. G. Wong, M. Medway, and M. Didsbury Health and wealth in children and adolescents with chronic kidney disease (K-CAD study) BMC Public Health 14 1 2014 307