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Impact of Videotaped Information on the Experience of Parents of Children with Acute Lymphoblastic Leukemia

  • Giancarlo Di Giuseppe
  • Jason D. Pole
  • Oussama Abla
  • Angela PunnettEmail author
Article
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Abstract

Videotaped information has been shown to be effective in reducing parental anxiety and facilitating knowledge transfer in various clinical settings. There is lack of literature on the use of videotaped information during the pediatric oncology initial family disclosure meeting. The purpose of this study was to deliver an informative DVD, highlighting information on childhood acute lymphoblastic leukemia (ALL), to parents of children with newly diagnosed ALL and to assess if the DVD provided increased levels of satisfaction and decreased levels of anxiety in parents around the time of diagnosis. We surveyed 24 parents of children on active treatment for ALL, diagnosed between the ages of 1 and 18 years from 2008 to 2016 at The Hospital for Sick Children, Toronto, Canada. Parents were provided a survey questionnaire assessing levels of satisfaction with information communicated by the healthcare team and anxiety following verbal disclosure and were asked to report satisfaction and anxiety levels immediately following viewing the DVD intervention. Twenty-three/24 (95.8%) parents surveyed reported seeking information from additional resources after disclosure. Of the 24 parents who watched the DVD, 12 (50.0%) watched it once, while 12 (50.0%) watched it twice or more. All parents were satisfied with DVD information, and there was a significant decrease in anxiety after viewing (P = 0.03). All 24 parents felt that the DVD was a useful educational tool. Videotaped information after verbal disclosure is an effective educational resource and is associated with reduced anxiety among parents of children with ALL.

Keywords

Childhood leukemia Cancer diagnosis Videotaped information 

Notes

Compliance with Ethical Standards

Ethics board approval was obtained from the Hospital for Sick Children, Toronto, Canada.

Supplementary material

13187_2019_1485_MOESM1_ESM.pdf (244 kb)
ESM 1 (PDF 244 kb)

References

  1. 1.
    McCarthy MC, Ashley DM, Lee KJ, Anderson VA (2012) Predictors of acute and posttraumatic stress symptoms in parents following their child's cancer diagnosis. J Trauma Stress 25(5):558–566.  https://doi.org/10.1002/jts.21745 CrossRefPubMedGoogle Scholar
  2. 2.
    Bally JM, Holtslander L, Duggleby W, Wright K, Thomas R, Spurr S, Mpofu C (2014) Understanding parental experiences through their narratives of restitution, chaos, and quest: improving care for families experiencing childhood cancer. J Fam Nurs 20(3):287–312.  https://doi.org/10.1177/1074840714532716 CrossRefPubMedGoogle Scholar
  3. 3.
    Sultan S, Leclair T, Rondeau E, Burns W, Abate C (2016) A systematic review on factors and consequences of parental distress as related to childhood cancer. Eur J Cancer Care (Engl) 25(4):616–637.  https://doi.org/10.1111/ecc.12361 CrossRefGoogle Scholar
  4. 4.
    Kilicarslan-Toruner E, Akgun-Citak E (2013) Information-seeking behaviours and decision-making process of parents of children with cancer. Eur J Oncol Nurs 17(2):176–183.  https://doi.org/10.1016/j.ejon.2012.03.001 CrossRefPubMedGoogle Scholar
  5. 5.
    Sisk BA, Friedrich AB, Mozersky J, Walsh H, DuBois J (2018) Core functions of communication in pediatric medicine: an exploratory analysis of parent and patient narratives. J Cancer Educ [Epub ahead of print].  https://doi.org/10.1007/s13187-018-1458-x
  6. 6.
    Nyborn JA, Olcese M, Nickerson T, Mack JW (2016) “Don’t try to cover the sky with your hands”: Parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med 19(6):626–631.  https://doi.org/10.1089/jpm.2015.0472 CrossRefPubMedGoogle Scholar
  7. 7.
    Eden OB, Black I, MacKinlay GA, Emery AE (1994) Communication with parents of children with cancer. Palliat Med 8(2):105–114.  https://doi.org/10.1177/026921639400800203 CrossRefPubMedGoogle Scholar
  8. 8.
    Masera G, Beltrame F, Corbetta A, Fraschini D, Adamoli L, Jankovic M, Spinetta JJ (2003) Audiotaping communication of the diagnosis of childhood leukemia: parents’ evaluation. J Pediatr Hematol Oncol 25(5):368–371CrossRefGoogle Scholar
  9. 9.
    Ong LM, Visser MR, Lammes FB, van Der Velden J, Kuenen BC, de Haes JC (2000) Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall, and quality of life: a randomized, double-blind study. J Clin Oncol 18(16):3052–3060.  https://doi.org/10.1200/JCO.2000.18.16.3052 CrossRefPubMedGoogle Scholar
  10. 10.
    Berghmans J, Weber F, van Akoleyen C, Utens E, Adriaenssens P, Klein J, Himpe D (2012) Audiovisual aid viewing immediately before pediatric induction moderates the accompanying parents' anxiety. Paediatr Anaesth 22(4):386–392.  https://doi.org/10.1111/j.1460-9592.2011.03767.x CrossRefPubMedGoogle Scholar
  11. 11.
    Sheridan, R., J. Martin-Kerry, I. Watt, S. Higgins, S. R. Stones, D. H. Taylor, and P. Knapp. 2018. User testing digital, multimedia information to inform children, adolescents and their parents about healthcare trials. J Child Health Care:1367493518807325. doi: https://doi.org/10.1177/1367493518807325.
  12. 12.
    Taddio A, Parikh C, Yoon EW, Sgro M, Singh H, Habtom E, Ilersich AF, Pillai Riddell R, Shah V (2015) Impact of parent-directed education on parental use of pain treatments during routine infant vaccinations: a cluster randomized trial. PAIN 156(1):185–191.  https://doi.org/10.1016/j.pain.0000000000000021 CrossRefPubMedGoogle Scholar
  13. 13.
    Siegel RL, Miller KD, Jemal A (2018) Cancer statistics, 2018. CA Cancer J Clin 68(1):7–30.  https://doi.org/10.3322/caac.21442 CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Likert R (1932) A technique for the measurement of attitudes. Arch Psychol 22(140):1–55Google Scholar
  15. 15.
    Aburn G, Gott M (2011) Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: a narrative review. J Pediatr Oncol Nurs 28(5):300–305.  https://doi.org/10.1177/1043454211409585 CrossRefPubMedGoogle Scholar
  16. 16.
    Greenzang KA, Cronin AM, Kang TI, Mack JW (2018) Parental distress and desire for information regarding long-term implications of pediatric cancer treatment. Cancer 124(23):4529–4537.  https://doi.org/10.1002/cncr.31772. CrossRefPubMedGoogle Scholar
  17. 17.
    Kaye E, Mack JW (2013) Parent perceptions of the quality of information received about a child's cancer. Pediatr Blood Cancer 60(11):1896–1901.  https://doi.org/10.1002/pbc.24652 CrossRefPubMedGoogle Scholar
  18. 18.
    Kessel RM, Roth M, Moody K, Levy A (2013) Day one talk: parent preferences when learning that their child has cancer. Support Care Cancer 21(11):2977–2982.  https://doi.org/10.1007/s00520-013-1874-8 CrossRefPubMedGoogle Scholar
  19. 19.
    Rodgers CC, Laing CM, Herring RA, Tena N, Leonardelli A, Hockenberry M, Hendricks-Ferguson V (2016) Understanding effective delivery of patient and family education in pediatric oncology: a systematic review from the children’s oncology group. J Pediatr Oncol Nurs 33(6):432–446.  https://doi.org/10.1177/1043454216659449 CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Hentea C, Cheng ER, Bauer NS, Mueller EL (2018) Parent-centered communication at time of pediatric cancer diagnosis: a systematic review. Pediatr Blood Cancer 65(8):e27070.  https://doi.org/10.1002/pbc.27070 CrossRefPubMedGoogle Scholar
  21. 21.
    Rodgers CC, Stegenga K, Withycombe JS, Sachse K, Kelly KP (2016) Processing information after a child’s cancer diagnosis-how parents learn. J Pediatr Oncol Nurs 33(6):447–459.  https://doi.org/10.1177/1043454216668825. CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Aburn G, Gott M (2014) Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: the parent’s perspective. Pediatr Nurs 40(5):243–248 256 PubMedGoogle Scholar
  23. 23.
    Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E (2011) Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs 28(3):143–153.  https://doi.org/10.1177/1043454210378015 CrossRefPubMedGoogle Scholar
  24. 24.
    Greenzang KA, Dauti A, Mack JW (2018) Parent perspectives on information about late effects of childhood cancer treatment and their role in initial treatment decision making. Pediatr Blood Cancer 65(6):e26978.  https://doi.org/10.1002/pbc.26978 CrossRefPubMedGoogle Scholar
  25. 25.
    Kastel A, Enskar K, Bjork O (2011) Parents’ views on information in childhood cancer care. Eur J Oncol Nurs 15(4):290–295.  https://doi.org/10.1016/j.ejon.2010.10.007 CrossRefPubMedGoogle Scholar
  26. 26.
    Sisk BA, Mack JW, Ashworth R, DuBois J (2018) Communication in pediatric oncology: state of the field and research agenda. Pediatr Blood Cancer 65(1):e26727.  https://doi.org/10.1002/pbc.26727 CrossRefGoogle Scholar
  27. 27.
    Tan SS, Goonawardene N (2017) Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res 19(1):e9.  https://doi.org/10.2196/jmir.5729. CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Gysels M, Higginson IJ (2007) Interactive technologies and videotapes for patient education in cancer care: systematic review and meta-analysis of randomised trials. Support Care Cancer 15(1):7–20.  https://doi.org/10.1007/s00520-006-0112-z CrossRefPubMedGoogle Scholar
  29. 29.
    Winston K, Grendarova P, Rabi D (2018) Video-based patient decision aids: a scoping review. Patient Educ Couns 101(4):558–578.  https://doi.org/10.1016/j.pec.2017.10.009 CrossRefPubMedGoogle Scholar
  30. 30.
    Kinnane N, Thompson L (2008) Evaluation of the addition of video-based education for patients receiving standard pre-chemotherapy education. Eur J Cancer Care (Engl) 17(4):328–339.  https://doi.org/10.1111/j.1365-2354.2007.00846.x CrossRefGoogle Scholar
  31. 31.
    Thomas R, Daly M, Perryman B, Stockton D (2000) Forewarned is forearmed—benefits of preparatory information on video cassette for patients receiving chemotherapy or radiotherapy—a randomised controlled trial. Eur J Cancer 36(12):1536–1543.  https://doi.org/10.1016/s0959-8049(00)00136-2 CrossRefPubMedGoogle Scholar
  32. 32.
    Hazen RA, Eder M, Drotar D, Zyzanski S, Reynolds AE, Reynolds CP, Kodish E, Noll RB, Team Multi-Site Intervention Study to Improve Consent Research (2010) A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia. Pediatr Blood Cancer 55(1):113–118.  https://doi.org/10.1002/pbc.22411 CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Clerici CA, Veneroni L, Bisogno G, Trapuzzano A, Ferrari A (2012) Videos on rhabdomyosarcoma on YouTube: an example of the availability of information on pediatric tumors on the web. J Pediatr Hematol Oncol 34(8):e329–e331.  https://doi.org/10.1097/MPH.0b013e31825886f8 CrossRefPubMedGoogle Scholar
  34. 34.
    Miller VA, Drotar D, Burant C, Kodish E (2005) Clinician-parent communication during informed consent for pediatric leukemia trials. J Pediatr Psychol 30(3):219–229.  https://doi.org/10.1093/jpepsy/jsi032 CrossRefPubMedGoogle Scholar

Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  • Giancarlo Di Giuseppe
    • 1
    • 2
  • Jason D. Pole
    • 2
  • Oussama Abla
    • 1
  • Angela Punnett
    • 1
    Email author
  1. 1.Division of Haematology/Oncology, Department of PaediatricsHospital for Sick ChildrenTorontoCanada
  2. 2.Pediatric Oncology Group of OntarioTorontoCanada

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