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Identifying gaps in parental support for families of children with hypoplastic left heart syndrome

Part of: Hypoplastic Left Heart Syndrome (HLHS)

Published online by Cambridge University Press:  10 May 2021

Meghan Landry ,
Meghan Katers ,
Erica Olson ,
Lynn Cern ,
Timothy J Nelson  and
Katherine A Campbell Open the ORCID record for Katherine A Campbell [Opens in a new window]
Meghan Landry
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Meghan Katers
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Erica Olson
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Lynn Cern
Affiliation:
Wanek Program for Hypoplastic Left Heart Syndrome, Mayo Clinic, Rochester, MN, USA
Timothy J Nelson
Affiliation:
Center for Regenerative Medicine, Mayo Clinic, Rochester, MN, USA Division of General Internal Medicine, Mayo Clinic, Rochester, MN, USA Department of Molecular Pharmacology and Experimental Therapeutics, Mayo Clinic, Rochester, MN, USA Division of Pediatric Cardiology, Mayo Clinic, Rochester, MN, USA Division of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA
Katherine A Campbell*
Affiliation:
Department of Interprofessional Education, St. Catherine University, St. Paul, MN, USA Women’s Health Integrative Research Center, St. Catherine University, St. Paul, MN, USA
*
Author for correspondence: Katherine A Campbell, PhD, St. Catherine University, 2004 Randolph Ave, St. Paul, MN55105, USA. Tel: 1-651-690-6179. E-mail: [email protected]
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Abstract

Purpose:

The purpose of this study is to identify gaps in support for parents of children with Hypoplastic Left Heart Syndrome.

Design and methods:

Using a mixed-methods approach, the researchers first studied the parental and care team experience through interviews of Hypoplastic Left Heart Syndrome mothers and members of the inter-professional care team and then conducted an international survey of 690 Hypoplastic Left Heart Syndrome primary caregivers to validate the qualitative findings.

Results:

Parental and care team interviews revealed three main gaps in parental support, including lack of open communication, unrealistic parental expectations, and unclear inter-professional team roles. Survey results found that parents whose children were diagnosed with Hypoplastic Left Heart Syndrome after birth indicated significant dissatisfaction with the care team’s open communication and welcoming of feedback (p = 0.008). As parents progress through the stages of surgical intervention, they also indicate significant dissatisfaction with the care team’s anticipation of parental emotional needs and provision of coping resources (p = 0.003).

Conclusions:

Parental support interventions should focus on providing resources to help parents cope, helping the care team model open communication, and welcoming feedback on the parental experience.

Practice implications:

Interventions should be piloted with parents who are in the later stages of the surgical intervention timeline or whose children were diagnosed after birth as they are the populations who perceived the least support within this study.

Keywords

Hypoplastic left heart syndrome (HLHS)congenital heart disease (CHD)parental supportfamily-centred careinter-professional care team
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 2 , February 2022 , pp. 215 - 222
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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Footnotes

*

indicates co-first authors

References

Mayo Clinic Staff. (2018, August 04). Hypoplastic left heart syndrome. Retrieved August 22, 2020, from https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599 Google Scholar
Kon, AA, Prsa, M, Rohlicek, CV Choices doctors would make if their infant had hypoplastic left heart syndrome: comparison of survey data from 1999 and 2007. Pediatr Cardiol 2013; 34: 348–353.CrossRefGoogle 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
March, S Parents’ perceptions during the transition to home for their child with a congenital heart defect: How can we support families of children with hypoplastic left heart syndrome? J Spec Pediatr Nurs 2017; 22.CrossRefGoogle Scholar
Prsa, M, Holly, CD, Carnevale, FA, et al. Attitudes and practices of cardiologists and surgeons who manage HLHS. Pediatrics 2010; 125: e625–e630.CrossRefGoogle ScholarPubMed
Ellinger, MK, Rempel, GR Parental decision making regarding treatment of hypoplastic left heart syndrome. Adv Neonatal Care 2010; 10: 316–322; quiz 323–4.CrossRefGoogle ScholarPubMed
Rempel, GR, Rogers, LG, Ravindran, V et al. Facets of parenting a child with hypoplastic left heart syndrome. Res Theory Nurs Pract, 2012; 2012: 1–9.CrossRefGoogle ScholarPubMed
Kaugars, A, Shields, C, Brosig, C Stress and quality of life among parents of children with congenital heart disease referred for psychological services. Congenit Heart Dis 2017; 13, 72–78.CrossRefGoogle ScholarPubMed
Woolf-King, SE, Anger, A, Arnold, EA, et al. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6.CrossRefGoogle Scholar
Davis, JA, Miller-Tate, H, Texter, KM. Launching a new strategy for multidisciplinary management of single-ventricle heart defects. CCN 2018; 38: 60–71.Google ScholarPubMed
Shaw, RJ, Bernard, RS, Deblois, T, Ikuta, LM, Ginzburg, K, Koopman, C The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics 2009; 50: 131–137.CrossRefGoogle ScholarPubMed
Klug, J, Hall, C, Delaplane, EA, et al. Promoting parent partnership in developmentally supportive care for infants in the pediatric cardiac intensive care unit. Adv Neonatal Care 2020; 20: 161–170.CrossRefGoogle ScholarPubMed
Fruitman, DS. Hypoplastic left heart syndrome: Prognosis and management options. J Paediatr Child Health 2000; 5: 219–225.CrossRefGoogle ScholarPubMed
Walsh, MJ, Verghese, GR, Ferguson, ME, et al. Counseling practices for fetal hypoplastic left heart syndrome. Pediatr Cardiol 2017; 38: 946–958.CrossRefGoogle ScholarPubMed
Center for Disease Control and Prevention. (2016) Facts about Hypoplastic Left Heart Syndrome. Retrieved from https://www.cdc.gov/ncbddd/heartdefects/hlhs.html Google Scholar
Burkhart, HM, Thompson, JL, Nelson, TJ. Hypoplastic left heart syndrome: What’s next? J Thorac Cardiovasc Surg 2016; 151: 909–910.CrossRefGoogle ScholarPubMed
Goldberg, D (2014, April 02). Hypoplastic Left Heart Syndrome (HLHS). Retrieved August 22, 2020, from https://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs Google Scholar
Kuebelbeck, A Waiting with Gabriel. Loyola Press, Chicago, IL, 2003.Google Scholar
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