Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-17T22:19:51.915Z Has data issue: false hasContentIssue false
  • English
  • Français

eHealth literacy and preferences for eHealth resources in parents of children with complex CHD

Published online by Cambridge University Press:  19 September 2016

Nadine A. Kasparian ,
Nathan Lieu ,
David S. Winlaw ,
Andrew Cole ,
Edwin Kirk  and
Gary F. Sholler
Nadine A. Kasparian*
Affiliation:
Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Sydney, New South Wales, Australia Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia
Nathan Lieu
Affiliation:
Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Sydney, New South Wales, Australia Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia
David S. Winlaw
Affiliation:
Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia Discipline of Paediatrics and Child Health, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
Andrew Cole
Affiliation:
Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia
Edwin Kirk
Affiliation:
Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Sydney, New South Wales, Australia Department of Medical Genetics, Sydney Children’s Hospital, Randwick, New South Wales, Australia
Gary F. Sholler
Affiliation:
Heart Centre for Children, The Sydney Children’s Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia Discipline of Paediatrics and Child Health, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
*
Correspondence to: Associate Professor N. Kasparian, Heart Centre for Children, Locked Bag 4001, The Children’s Hospital at Westmead, Westmead, NSW 2145, Australia. Tel: +61 2 9382 0110; Fax: +61 2 9845 2163; E-mail: n.kasparian@unsw.edu.au
Get access Rights & Permissions [Opens in a new window]

Abstract

Introduction

This study aimed to (a) examine eHealth literacy, beliefs, and behaviours in parents of children with complex CHD, and (b) identify parents’ preferences for the content, format, features, and functions of eHealth resources for CHD.

Materials and methods

Families (n=198) of children born between 2008 and 2011 and diagnosed with CHD requiring surgery were mailed a survey assessing a range of variables including eHealth literacy, beliefs, and behaviours as well as preferences for the format, functions, features, and content of eHealth resources for CHD.

Results

A total of 132 parents (83 mothers, 49 fathers) completed the survey (response rate: 50%). Mothers (96%) were more likely to access eHealth resources than fathers (83%, χ2=6.74, p=0.009). Despite high eHealth resource use, eHealth literacy was relatively low, with results demonstrating considerable and widespread gaps in awareness of, access to, and communication about eHealth resources. Over 50% of parents reported that decisions regarding their child’s healthcare were influenced, to some extent, by web-based resources. Barriers to doctor–patient communication about eHealth included limited consultation time and concern about doctors’ disapproval. Participants demonstrated a strong desire for “eHealth prescriptions” from their child’s healthcare team, and perceived a wide range of eHealth topics as highly important, including treatment-related complications as well as physical, cognitive, and emotional development in children with CHD.

Discussion

Results suggest a need for stronger, more proactive partnerships between clinicians, researchers, educators, technologists, and patients and families to bring about meaningful innovations in the development and implementation of eHealth interventions in paediatric cardiology.

Keywords

CHDinterneteHealth literacyeHealth interventionsdoctor–patient communicationdecision making
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 4 , May 2017 , pp. 722 - 730
Check for updates
Copyright
© Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Bernhardt, J, Lariscy, R, Parrott, R, Silk, K, Felter, E. Perceived barriers to internet-based health communication on human genetics. J Health Commun 2002; 7: 325–340.Google Scholar
2. Gerber, B, Eiser, A. The patient-physician relationship in the internet age: future prospects and the research agenda. J Med Internet Res 2001; 3: E15.CrossRefGoogle ScholarPubMed
3. Robinson, C, Flowers, C, Alperson, B, Norris, K. Internet access and use among disadvantaged inner-city patients. JAMA 1999; 281: 988–989.Google Scholar
4. Mann, C, Stewart, F. Internet Communication and Qualitative Research. Sage, Thousand Oaks, CA, 2000.CrossRefGoogle Scholar
5. Axler, R, Strong, K, Jordens, C, Ankeny, R, Barlow-Stewart, K, Kerridge, I. What’s in a name? searching the web for information about ethically contentious and emerging healthcare technologies. J Commun Health 2009; 2: 173–183.CrossRefGoogle Scholar
6. Mills, ME, Sullivan, K. The importance of information giving for patients newly diagnosed with cancer: a review of the literature. J Clin Nurs 1999; 8: 631–642.CrossRefGoogle Scholar
7. Rice, RE. Influences, usage, and outcomes of internet health information searching: multivariate results from the Pew surveys. Int J Med Inform 2006; 75: 8–28.CrossRefGoogle ScholarPubMed
8. Mossman, J, Boudioni, M, Slevin, ML. Cancer information: a cost-effective intervention. Eur J Cancer 1999; 35: 1587–1591.CrossRefGoogle ScholarPubMed
9. Wald, H, Dube, C, Anthony, D. Untangling the web: the impact of internet use on healthcare and the physician-patient relationship. Patient Educ Couns 2007; 68: 218–224.CrossRefGoogle ScholarPubMed
10. Eisenbach, G, Diepgen, T. Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information. BMJ 1998; 317: 1496–1502.CrossRefGoogle Scholar
11. Davis, J. Disenfranchising the disabled: the inaccessibility of internet-based health information. J Health Commun 2002; 7: 355–367.CrossRefGoogle ScholarPubMed
12. Potts, H, Wyatt, J. Survey of doctors’ experience of patients using the internet. J Med Internet Res 2002; 4: e5.CrossRefGoogle ScholarPubMed
13. Ikemba, CM, Kozinetz, CA, Feltes, TF, et al. Internet use in families with children requiring cardiac surgery for congenital heart disease. Pediatrics 2002; 109: 419–422.CrossRefGoogle ScholarPubMed
14. Massin, MM, Montesanti, J, Gerard, P, Massin, MM, Montesanti, J, Gerard, P. Use of the internet by parents of children with congenital heart disease. Acta Cardiol 2006; 61: 406–410.Google Scholar
15. Norman, CD, Skinner, HA. eHEALS: the eHealth Literacy Scale. J Med Internet Res 2006; 8: e27.Google Scholar
16. Australian Bureau of Statistics. Year Book Australia, 2012. Australian Bureau of Statistics, Canberra, 2012.Google Scholar
17. Jenkins, KJ, Gauvreau, K, Newburger, JW, Spray, TL, Moller, JH, Iezzoni, LI. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110–118.Google Scholar
18. Clark, EJ. Health care web sites: are they reliable? J Med Syst 2002; 26: 519–528.CrossRefGoogle ScholarPubMed
19. Roche, MI, Skinner, D. How parents search, interpret, and evaluate genetic information obtained from the internet. J Genet Couns 2009; 18: 119–129.Google Scholar
20. Wainstein, BK, Sterling-Levis, K, Baker, SA, Taitz, J, Brydon, M. Use of the internet by parents of paediatric patients. J Paediatr Child Health 2006; 42: 528–532.Google Scholar
21. Kendall, L, Sloper, P, Lewin, RJ, Parsons, JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 20–27.CrossRefGoogle ScholarPubMed
22. Hacker, D, Niederhauser, D. Promoting deep and durable learning in the online classroom. New Dir for Teach Learn 2000; 2000: 53–63.Google Scholar
23. D’Alessandro, DM, Kingsley, P, Johnson-West, J. The readability of pediatric patient education materials on the World Wide Web. Arch Pediatr Adolesc Med 2001; 155: 807–812.Google Scholar
24. Geller, PA, Psaros, C, Kerns, D. Web-based resources for health care providers and women following pregnancy loss. J Obstet Gynecol Neonatal Nurs 2006; 35: 523–532.Google Scholar
25. Mackert, M, Kahlor, L, Tyler, D, Gustafson, J. Designing e-health interventions for low-health-literate culturally diverse parents: addressing the obesity epidemic. Telemed J E Health 2009; 15: 672–677.Google Scholar
26. National Health and Medical Research Council (NHMRC) of Australia. How to Present the Evidence for Consumers: Preparation for Consumer Publications. Commonwealth of Australia, Canberra, 2000.Google Scholar
27. Shedlosky-Shoemaker, R, Sturm, AC, Saleem, M, Kelly, KM. Tools for assessing readability and quality of health-related web sites. J Genet Couns 2009; 18: 49–59.CrossRefGoogle ScholarPubMed
28. Nielsen- Bohlman, L, Panzer, A, Hamlin, B, Kindig, D. Health Literacy: A Prescription to End Confusion. National Academies Press. Institute of Medicine. Committee on Health Literacy, Board on Neuroscience and Behavioral Health,, Washington, DC, 2004.Google Scholar
29. Uzark, K, Rosenthal, A, Behrendt, D, Becket, M. Use of videotape to promote parenting of infants with serious congenital heart defects. Patient Educ Couns 1985; 7: 111–119.CrossRefGoogle Scholar
30. DeMaso, DR, Gonzalez-Heydrich, J, Erickson, JD, Grimes, VP, Strohecker, C. The experience journal: a computer-based intervention for families facing congenital heart disease. J Am Acad Child Adolesc Psychiatry 2000; 39: 727–734.CrossRefGoogle ScholarPubMed
31. van der Vaart, R, van Deursen, AJ, Drossaert, CH, Taal, E, van Dijk, JA, van de Laar, MA. Does the eHealth Literacy Scale (eHEALS) measure what it intends to measure? validation of a Dutch version of the eHEALS in two adult populations. J Med Internet Res 2011; 13: e86.CrossRefGoogle ScholarPubMed
32. Robinson, C, Graham, J. Perceived internet health literacy of HIV-positive people through the provision of a computer and internet health education intervention. Health Info Libr J 2010; 27: 295–303.Google Scholar
33. van Beelen, ME, Beirens, TM, den Hertog, P, van Beeck, EF, Raat, H. Effectiveness of web-based tailored advice on parents’ child safety behaviors: randomized controlled trial. J Med Internet Res 2014; 16: e17.Google Scholar
34. Wantland, DJ, Portillo, CJ, Holzemer, WL, Slaughter, R, McGhee, EM. The effectiveness of web-based vs. non-web-based interventions: a meta-analysis of behavioral change outcomes. J Med Internet Res 2004; 6: e40.Google Scholar
35. Crisp, D, Griffiths, K, Mackinnon, A, Bennett, K, Christensen, H. An online intervention for reducing depressive symptoms: secondary benefits for self-esteem, empowerment and quality of life. Psychiatry Res 2014; 216: 60–66.Google Scholar
36. Blue, GM, Kasparian, NA, Sholler, GF, Kirk, EP, Winlaw, DS. Genetic counselling in parents of children with congenital heart disease significantly improves knowledge about causation and enhances psychosocial functioning. Int J Cardiol 2015; 178: 124–130.Google Scholar