Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Quality Improvement Article
  • Published:

Quality Improvement

Constructing a relevant decision aid for parents of children with bronchopulmonary dysplasia

Journal of Perinatology volume 37, pages 1341–1345 (2017)Cite this article

Subjects

Abstract

Background:

To develop and test a decision aid for counseling parents of children with bronchopulmonary dysplasia (BPD).

Local problem:

Parental education about complex conditions is not standardized and communication and understanding may not be adequate.

Methods:

Semi-structured interviews were conducted with 33 neonatal clinicians and 12 parents of children with BPD using a qualitative research design. The interviews were used to identify education topics that were felt to be important in BPD education. These topics were then used to create a visual decision aid to be used in counseling sessions with parents. The decision aid was then used in mock counseling sessions with 15 ‘experienced’ participants and 7 ‘naïve’ participants to assess its efficacy. The participants completed a pre and post test to assess change in knowledge as well as an 11-question Likert style acceptability survey.

Intervention:

Implementation of a decision aid while educating parents about BPD.

Results:

Topics identified during the interviews were used to create eight educational cards which included pictures, pictographs and statistics. Overall, participants thought the decision aid contained an appropriate amount of information, were easy to understand and improved their knowledge about BPD. Testing demonstrated a significant increase in knowledge in both the ‘experienced’ (P<0.0001) and ‘naïve’ group (P=0.0064).

Conclusion:

A decision aid for parents of children with BPD may improve understanding of the condition and help facilitate communication between parents and doctors.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Figure 1
Figure 2

Similar content being viewed by others

References

  1. Wagner EH . The role of patient care teams in chronic disease management. BMJ 2000; 320: 569–572.

    Article  CAS  Google Scholar 

  2. Shepard EG, Knupp AM, Welty SE, Susey KM, Gardner WP, Gest AL . An interdisciplinary bronchopulmonary dysplasia program is associated with improved neurodevelopmental outcomes and fewer hospitalizations. J Perinatol 2012; 32: 33–38.

    Article  Google Scholar 

  3. Walsh MC, Szefler S, Davis J, Allen M, Van Marter L, Abman S et al. Summary Proceedings From the Bronchopulmonary Dysplasia Group. Pediatrics 2006; 117: 552–554.

    Article  Google Scholar 

  4. Kobal K, Schlucter M, Minich N, Friedman H, Taylor HG, Wilson-Costello D et al. Outcomes of extremely low gestational age (&lt;28 weeks) Infants with bronchopulmonary dysplasia: Effect of practice changes in 200 to 2003. Pediatrics 2008; 121: 73.

    Article  Google Scholar 

  5. Wilson-Costello D, Walsh MC, Langer JC, Guillet R, Laptook AR, Stoll BJ et al. Impact of postnatal corticosteroid (PNS) use on neurodevelopment at 18-22 months adjusted age: Effects of dose, timing and risk of bronchopulmonary dysplasia in extremely low birthweight infants. Pediatrics 2009; 123: 430–437.

    Article  Google Scholar 

  6. Bode MM, D’Eugenio DB, Firsyth N, Coleman J, Gross CR, Gross SJ . Outcome of extreme prematurity: a prospective comparison of 2 regional cohorts born 20 years apart. Pediatrics 2009; 124: 866–874.

    Article  Google Scholar 

  7. Wilson-Costello D, Friedman H, Minich N, Fanaroff AA, Hack M . Improved survival rates with increased neurodevelopmental disability for extremely low birth weight infants in the 1990s. Pediatrics 2005; 115: 997–1003.

    Article  Google Scholar 

  8. Smith VC, Zupancic JAF, McCormick MC, Croen LA, Greene J, Escobar GJ et al. Rehospitalization in the first year of life among infants with bronchopulmonary dysplasia. J Pediatrics 2004; 144: 799–803.

    Google Scholar 

  9. Short EJ, Kircher HL, Asaad GR, Fulton SE, Lewis BA, Klein N et al. Developmental Sequelae in Preterm Infants Having a Diagnosis of Bronchopulmonary Dysplasia: Analysis Using a Severity-Based Classification System. Arch Pediatr Adolesc Med 2007; 161: 1082–1087.

    Article  Google Scholar 

  10. Gracey K, Talbot D, Lankford R, Dodge P . The changing face of bronchopulmonary dysplasia: Part 2. Discharging an infant home on oxygen. Adv Neonat Care 2003; 3: 88–98.

    Article  Google Scholar 

  11. Zupancic JA, Kirpalani H, Barrett J, Stewart S, Gafni A, Streiner D et al. Characterizing doctor-parent communication in counseling for impending preterm delivery. Arch Dis Child Fetal Neonatal 2002; 87: F113–F117.

    Article  CAS  Google Scholar 

  12. Siminoff LA, Gordon NH, Silverman P, Budd T, Ravdin PM . A Decision Aid to Assist in Adjuvant Therapy Choices for Breast Cancer. Psychooncology 2006; 15: 1001–1013.

    Article  Google Scholar 

  13. Holbrook A, Labiris R, Goldsmith CH, Ota K, Harb S, Sebaldt RJ . Influence of decision aids on patient preferences for anticoagulant therapy: a randomized trial. Can Med Assoc J 2007; 176 (11): 1583–1587.

    Article  Google Scholar 

  14. Whelan T, Sawka C, Levine M et al. Helping Patients Make Informed Choices: A Randomized Trial of a Decision Aid for Adjuvant Chemotherapy in Lymph Node-Negative Breast Cancer. J Natl Cancer Inst 2003; 95 (8): 581–587.

    Article  Google Scholar 

  15. Stacey D, Legare F, Col NF, Bennett CL, Barry MJ, Eden KB et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014; 1: Art. No.:CD001431.

    Google Scholar 

  16. Chiew KS, Shepherd H, Vardy J, Tattersall MH, Butow PN, Leighl NB . Development and evaluation of a decision aid for patients considering first-line chemotherapy for metastatic breast cancer. Health Expect 2008; 11 (1): 35–45.

    Article  Google Scholar 

  17. Levine MN, Gafni A, Markham B, MacFarlane D . A bedside decision instrument to elicit a patient's preference concerning adjuvant chemotherapy for breast cancer. Ann Intern Med 1992; 117 (1): 53–58.

    Article  CAS  Google Scholar 

  18. Man-Son-Hing M, O'Connor AM, Drake E, Biggs J, Hum V, Laupaci A . The effect of qualitative s. quantitative presentation of probability estimates on patient decision-making: a randomized trial. Health Expect 2002; 5 (3): 246–255.

    Article  Google Scholar 

  19. Guillen U, Suh S, Munson D, Posencheg M, Truitt E, Zupancic J et al. Development and prestesting of a decision-aid to use when counselling parents facing imminent extreme premature delivery. J Pediatr 2012; 160 (3): 382–387.

    Article  Google Scholar 

  20. Kakkilaya V, Groom LJ, Platt D, Kurepa D, Pramanik A, Caldito G et al. Use of a visual aid to improve counseling at the threshold of viability. J Pediatrics 2011; 128: e1511–e1519.

    Article  Google Scholar 

  21. Depth interviewing. In: Miller WL, Crabtree BF Doing Qualitative Research 2nd ed. Sage Publications: Thousand Oaks, CA, 1999; 89–107.

    Google Scholar 

  22. Miles MB, Huberman AM . Qualitative Data Analysis: A Sourcebook of New Methods2nd Ed Sage Publications: Thousand Oaks, CA, 1994.

    Google Scholar 

  23. Merenstein D, Diener-West M, Krist A, Pinnedger M, Cooper L . An assessment of the shared-decision model in parents of children with acute otitis media. Pediatrics 2005; 116 (6): 1267–1275.

    Article  Google Scholar 

  24. Kowalski WJ, Leef KH, Mackley A, Spear ML, Paul DA . Communicating with parents of premature infants: who is the informant? J Perinatol 2006; 36: 44–48.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Division of Neonatology, Crozer Keystone Health System, Upland, PA, USA

    M Skibo

  2. Division of Neonatology, Christiana Care Health System, Newark, DE, USA

    U Guillen & A Mackley

  3. Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    H Zhang, D Munson, K Nilan & H Kirpalani

Authors
  1. M Skibo
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. U Guillen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. H Zhang
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. D Munson
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. A Mackley
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. K Nilan
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. H Kirpalani
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to M Skibo.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Skibo, M., Guillen, U., Zhang, H. et al. Constructing a relevant decision aid for parents of children with bronchopulmonary dysplasia. J Perinatol 37, 1341–1345 (2017). https://doi.org/10.1038/jp.2017.141

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/jp.2017.141

This article is cited by

Search

Advanced search

Quick links