Hostname: page-component-848d4c4894-x5gtn Total loading time: 0 Render date: 2024-06-01T15:59:21.378Z Has data issue: false hasContentIssue false
  • English
  • Français

Provider insights on shared decision-making with families affected by CHD

Published online by Cambridge University Press:  03 November 2021

Nelangi M. Pinto Open the ORCID record for Nelangi M. Pinto [Opens in a new window] ,
Angira Patel ,
Rebecca K. Delaney Open the ORCID record for Rebecca K. Delaney [Opens in a new window] ,
Mary T. Donofrio ,
Bradley S. Marino ,
Stephen Miller ,
Elissa M. Ozanne ,
Susan L. Zickmund ,
Michelle H. Karasawa  and
Mandy L. Pershing
...Show all authors
Nelangi M. Pinto*
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA
Angira Patel
Affiliation:
Divisions of Cardiology, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Rebecca K. Delaney
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Mary T. Donofrio
Affiliation:
Division of Pediatric Cardiology, Children’s National Hospital, George Washington University School of Medicine, Washington, DC, USA
Bradley S. Marino
Affiliation:
Divisions of Cardiology, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA Division of Critical Care Medicine, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Stephen Miller
Affiliation:
Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA
Elissa M. Ozanne
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Susan L. Zickmund
Affiliation:
Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA
Michelle H. Karasawa
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Mandy L. Pershing
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Angela Fagerlin
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA
*
Author for correspondence: N. Pinto, MD, MS, Department of Pediatric Cardiology, University of Utah, Primary Children’s Outpatient Services Building, 81 Mario Capecchi Drive, Salt Lake City, UT 84113, USA. Tel: 801-213-7610; Fax: 801-213-7778. E-mail: nelangi.pinto@hsc.utah.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Background and Objectives:

Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making.

Methods:

We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach.

Results:

Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds.

Conclusions:

Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.

Keywords

CHDshared decision-makinginterviews
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 9 , September 2022 , pp. 1475 - 1482
Check for updates
Copyright
© The Author(s), 2021. Published by Cambridge University Press

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

Lee, CK. Prenatal counseling of fetal congenital heart disease. Curr Treat Options Cardiovasc Med 2017; 19: 5.CrossRefGoogle ScholarPubMed
Rempel, GR, Cender, LM, Lynam, MJ, Sandor, GG, Farquharson, D. Parents’ perspectives on decision making after antenatal diagnosis of congenital heart disease. J Obstet Gynecol Neonatal Nurs 2004; 33: 64–70.CrossRefGoogle ScholarPubMed
Charles, C, Gafni, A, Whelan, T. Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Soc Sci Med 1997; 44: 681–692.CrossRefGoogle Scholar
Kon, AA. The shared decision-making continuum. JAMA 2010; 304: 903–904.CrossRefGoogle ScholarPubMed
Salzburg Global Seminar. Salzburg statement on shared decision making. BMJ 2011; 342: d1745.CrossRefGoogle Scholar
Prsa, M, Holly, CD, Carnevale, FA, Justino, H, Rohlicek, CV. Attitudes and practices of cardiologists and surgeons who manage hlhs. Pediatrics 2010; 125: e625–e30.CrossRefGoogle ScholarPubMed
Boland, L, Graham, ID, Légaré, F, et al. Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci 2019; 14: 18.CrossRefGoogle ScholarPubMed
Chenni, N, Lacroze, V, Pouet, C, et al. Fetal heart disease and interruption of pregnancy: factors influencing the parental decision-making process. Prenat Diagn 2012; 32: 168–172.CrossRefGoogle ScholarPubMed
Neubauer, K, Williams, EP, Donohue, PK, Boss, RD. Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences. Cardiol Young 2018; 28: 1088–1092.CrossRefGoogle ScholarPubMed
Ellinger, MK, Rempel, GR. Parental decision making regarding treatment of hypoplastic left heart syndrome. Adv Neonatal Care 2010; 10: 316–322.CrossRefGoogle ScholarPubMed
Kovacevic, A, Simmelbauer, A, Starystach, S, et al. Assessment of needs for counseling after prenatal diagnosis of congenital heart disease - a multidisciplinary approach. Klin Padiatr 2018; 230: 251–256.Google ScholarPubMed
Kovacevic, A, Simmelbauer, A, Starystach, S, et al. Counseling for prenatal congenital heart disease—recommendations based on empirical assessment of counseling success. Front Pediatr 2020; 8: 2241.CrossRefGoogle ScholarPubMed
Kane, HL, Halpern, MT, Squiers, LB, Treiman, KA, Mccormack, LA. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin 2014; 64: 377–388.CrossRefGoogle ScholarPubMed
Patton, MQ. Qualitative research. In: Everitt, B, Howell, D (eds). Encyclopedia of Statistics in Behavioral Science. Wiley, Hoboken, NJ, 2005.Google Scholar
Britten, N. Qualitative research: qualitative interviews in medical research. BMJ 1995; 311: 251–253.CrossRefGoogle ScholarPubMed
Crabtree, B, Miller, W. Doing qualitative research. 2nd edn. Sage, Thousand Oak, 1999.Google Scholar
Gaglio, B, Henton, M, Barbeau, A, et al. Methodological standards for qualitative and mixed methods patient centered outcomes research. BMJ 2020; 371: m4435.Google ScholarPubMed
Kon, AA, Ackerson, L, Lo, B. How pediatricians counsel parents when no “best-choice” management exists: lessons to be learned from hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 2004; 158: 436–441.CrossRefGoogle ScholarPubMed
Sekar, P, Marcus, KL, Williams, EP, Boss, RD. Red flags: a case series of clinician-family communication challenges in the context of chd. Cardiol Young 2017; 27: 1000–1003.CrossRefGoogle ScholarPubMed
Carlsson, T, Melander Marttala, U, Mattsson, E, Ringnér, A. Experiences and preferences of care among swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study. BMC Pregnancy Childbirth 2016; 16: 130–.CrossRefGoogle ScholarPubMed
Delaney, RK, Pinto, NM, Ozanne, E, et al. Did we make the right decision? Parents navigation of critical treatment decision(s) for their fetus/neonate diagnosed with a life-threatening congenital heart defect. In: 41st Annual Meeting of the Society for Medical Decision Making 2019.Google Scholar
Arya, B, Glickstein, JS, Levasseur, SM, Williams, IA. Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis 2013; 8: 78.CrossRefGoogle ScholarPubMed
Marino, BS, Tomlinson, RS, Drotar, D, et al. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009; 123: e708–15.CrossRefGoogle ScholarPubMed
Elwyn, G, Frosch, D, Thomson, R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012; 27: 1361–1367.CrossRefGoogle Scholar
Balkin, EM, Kirkpatrick, JN, Kaufman, B, et al. Pediatric cardiology provider attitudes about palliative care: a multicenter survey study. Pediatr Cardiol 2017; 38: 1324–1331.CrossRefGoogle ScholarPubMed
Kavalieratos, D, Mitchell, EM, Carey, TS, et al. Not the ‘grim reaper service’: an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. J Am Heart Assoc 2014; 3: e000544–e.CrossRefGoogle ScholarPubMed
Lowenstein, S, Macauley, R, Perko, K, Ronai, C. Provider perspective on the role of palliative care in hypoplastic left heart syndrome. Cardiol Young 2020; 30: 377–382.CrossRefGoogle ScholarPubMed
Davis, JAM, Bass, A, Humphrey, L, Texter, K, Garee, A. Early integration of palliative care in families of children with single ventricle congenital heart defects: a quality improvement project to enhance family support. Pediatr Cardiol 2020; 41: 114–122.CrossRefGoogle ScholarPubMed
Darst, JR, Newburger, JW, Resch, S, Rathod, RH, Lock, JE. Deciding without data. Congenit Heart Dis 2010; 5: 339–342.CrossRefGoogle ScholarPubMed
Vriend, JWJ, van der Velde, ET, Mulder, BJM. National registry and DNA-bank of patients with congenital heart disease: the concor-project. Nederlands tijdschrift voor geneeskunde 2004; 148: 1646–1647.Google Scholar
Jacobs, JP, Mayer, JE, Mavroudis, C, et al. The society of thoracic surgeons congenital heart surgery database: 2016 update on outcomes and quality. Ann Thorac Surg 2016; 101: 850–862.CrossRefGoogle Scholar