Information seeking behaviors of parents whose children have life-threatening illnesses

Pediatric Blood and Cancer

Volumn 56, Issue 5, 2011, Pages 805-811

  Knapp, Caprice ^a   Madden, Vanessa ^a   Marcu, Mircea ^a   Wang, Hua ^a   Curtis, Charlotte ^b   Sloyer, Phyllis ^b   Shenkman, Elizabeth ^a  

^a UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE   (United States)

^b FLORIDA DEPARTMENT OF HEALTH   (United States)

Author keywords

Information; Information technology; Palliative care

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CROSS-SECTIONAL STUDY; EDUCATIONAL STATUS; FEMALE; HEALTH CARE ACCESS; HEALTH LITERACY; HEALTH SURVEY; HIGH SCHOOL; HISPANIC; HUMAN; ILLNESS BEHAVIOR; INFANT; INFORMATION SEEKING; INFORMATION SERVICE; INTERNET; LIFE THREATENING ILLNESS; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; PALLIATIVE THERAPY; PARENTAL BEHAVIOR; PRESCHOOL CHILD; PRIORITY JOURNAL; RACE DIFFERENCE; SCHOOL CHILD;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; CRITICAL ILLNESS; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH EDUCATION; HUMANS; INFANT; INFORMATION SEEKING BEHAVIOR; INTERNET; MALE; PALLIATIVE CARE; PARENTS; PROGNOSIS; YOUNG ADULT;

EID: 79952140761     PISSN: 15455009     EISSN: 15455017     Source Type: Journal    
DOI: 10.1002/pbc.22674     Document Type: Article

References (38)

1. Kaiser Family Foundation. Trends in health care costs and spending. The Kaiser Family Foundation, Washington; c2010 [cited February 8, 2010], September 2007. Available from.
2. McGlynn EA, Asch SM, Adams J, et al. The quality of health care delivered to adults in the United States. N Engl J Med 2003;348:2635-2645.
3. Mangione-Smith R, DeCristofaro AH, Setodji CM, et al. The quality of ambulatory care delivered to children in the United States. N Engl J Med 2007;357:1515-1523.
4. Agency for Healthcare Research and Quality [homepage on the Internet]. AHRQ National Resource Center, Health Information Technology: Best practices transforming quality, safety, and efficiency. AHRQ, Rockville [cited February 8, 2010]. Available from.
5. AcademyHealth. Is Health Information Technology Associated With Patient Safety in the United States? Findings Brief Vol. XII, No. 3. Health Care Financing and Organization Initiative, Washington; c2009 [cited February 8, 2010]. Available from: [accessed September 30, 2009].
6. Centers for Medicare and Medicaid Services. Medicare and Medicaid Health Information Technology: Title IV of the American Recovery and Reinvestment Act. U.S. Department of Health and Human Services, Baltimore [updated May 14, 2007; cited February 8, 2010]. Available from.
7. Healthy People 2010. Healthy People 2010, Volume 1: Health Communication. U.S. Department of Health and Human Services, Washington [updated January 30, 2001; cited February 8, 2010]. Available from.
8. Markle Foundation: Working Group on Policies for Electronic Information Sharing Between Doctors and Patients. Markle Foundation, New York, c2008 [cited February 8, 2010]. Connecting Americans to their healthcare. Final Report. Available from.
9. DesRoches CM, Campbell EG, Rao SR, et al. Electronic health records in ambulatory care-a national survey of physicians. N Engl J Med 2008;359:50-60.
10. Jha AK, DesRoches CM, Campbell EG, et al. Use of electronic health records in U.S. hospitals. N Engl J Med 2009;360:1628-1638.
11. Smith V, Gifford K, Kramer S, et al. State eHealth Activities in 2007: Findings from a State Survey. The Commonwealth Fund, New York; c 2004-1009 [updated July 9, 2007; cited February 8, 2010]. Available from.
12. Menachemi N, Ettel DL, Brooks RG, et al. Charting the use of electronic health records and other information technologies among child health providers. BMC Pediatr 2006;6:21.
13. Menachemi N, Brooks RG, Schwalenstocker E, et al. Use of health information technology by children's hospitals in the United States. Pediatrics 2009;123:S80-S84.
14. Conway PH, White PJ, Clancy C. The public role in promoting child health information technology. Pediatrics 2009;123:S125-S127.
15. Britto MT, Wimberg J. Pediatric personal health records: Current trends and key challenges. Pediatrics 2009;123:S97-S99.
16. Willis L, Demiris G, Oliver DP. Internet use by hospice families and providers: A review. J Med Syst 2007;31:97-101.
17. Pereira J, Bruera E, Macmillan K, et al. Palliative cancer patients and their families on the Internet: Motivation and impact. J Palliat Care 2000;16:13-19.
18. Bensink M, Armfield N, Russell TG, et al. Paediatric palliative home care with Internet-based video-phones: Lessons learnt. J Telemed Telecare 2004;10:10-13.
19. Lind L, Karlsson D. A system for symptom assessment in advanced palliative home healthcare using digital pens. Med Inform Internet Med 2004;29:199-210.
20. Pereira J, Bruera E, Quan H. Palliative care on the net: An online survey of health care professionals. J Palliat Care 2001;17:41-45.
21. Long CO, Greenberg EA, Ismeurt RL, et al. Home health and hospice use of computers and the internet. Home Healthc Nurse 2000;18:666-671.
22. Coleman J, Olsen SJ, Sauter PK, et al. The effect of a frequently asked questions module on a pancreatic cancer Web site patient/family chat room. Cancer Nurs 2005;28:460-468.
23. Washington KT, Demiris G, Oliver DP, et al. Home Internet use among hospice service recipients: Recommendations for Web-based interventions. J Med Syst 2007;31:385-389.
24. Andre B, Ringdal GI, Loge JH, et al. Implementation of computerized technology in a palliative care unit. Palliat Support Care 2009;7:57-63.
25. Bach LA. Blogging during terminal care: Communication, color schemes, and creating a community. J Clin Oncol 2008;26:4504-4506.
26. Johnson DJ. On contexts of information seeking. Inf Process Manage 2003;39:735-760.
27. Norman CD, Skinner HA. eHEALS: The eHealth Literacy Scale. J Med Internet Res 2006;8:e27.
28. Knapp CA, Madden VL, Curtis CM, et al. Partners in care: Together for kids: Florida's model of pediatric palliative care. J Palliat Med 2008;11:1212-1220.
29. Statistical Analysis Software for Professionals, Release 9. Available from.
30. Larkin PJ, Dierckx de Casterle B, Schotsmans P. Transition towards end of life in palliative care: An exploration of its meaning for advanced cancer patients in Europe. J Palliat Care 2007;23:69-79.
31. Schulman-Green D, McCorkle R, Curry L, et al. At the crossroads: Making the transition to hospice. Palliat Support Care 2004;2:351-360.
32. Schofield P, Carey M, Love A, et al. "Would you like to talk about your future treatment options?" Discussing the transition from curative cancer treatment to palliative care. Palliat Med 2006;20:397-406.
33. Fox S, Jones S. The Social Life of Health Information. Pew Internet and American Life Project, Washington; c2010 [cited February 8, 2010]. Available from.
34. Institute of Medicine. Health Literacy, eHealth, and Communication. Washington, DC: National Academy Press; 2009.
35. Mackert M, Kahlor L, Tyler D, et al. Designing e-health interventions for low-health-literate culturally diverse parents: Addressing the obesity epidemic. Telemed J E Health 2009;15:672-677.
36. Knapp C, Huang IC, Madden V, et al. An evaluation of two decision-making scales for children with life-limiting illnesses. Palliat Med 2009;23:518-525.
37. Huang IC, Shenkman EA, Leite W, et al. Agreement was not found in adolescents' quality of life rated by parents and adolescents. J Clin Epidemiol 2009;62:337-346.
38. Knapp CA, Madden VL, Curtis C, et al. Assessing non-response bias in pediatric palliative care research. Palliat Med 2010;24(3): 340-347.