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The experience of fathers of children hospitalised with advanced heart disease

Published online by Cambridge University Press:  10 January 2024

Chase Samsel Open the ORCID record for Chase Samsel [Opens in a new window] ,
Jeffrey R. Reichman ,
Jessica A. Barreto ,
David W. Brown ,
Kevin Hummel ,
Lynn A. Sleeper  and
Elizabeth D. Blume
Chase Samsel*
Affiliation:
Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Boston, USA Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, USA Department of Psychiatry, Harvard Medical School, Boston, USA
Jeffrey R. Reichman
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, USA
Jessica A. Barreto
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, USA Department of Pediatrics, Harvard Medical School, Boston, USA
David W. Brown
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, USA Department of Pediatrics, Harvard Medical School, Boston, USA
Kevin Hummel
Affiliation:
Department of Pediatrics, University of Utah, Salt Lake City, USA
Lynn A. Sleeper
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, USA Department of Pediatrics, Harvard Medical School, Boston, USA
Elizabeth D. Blume
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, USA Department of Pediatrics, Harvard Medical School, Boston, USA
*
Corresponding author: C. Samsel; Email: chase.samsel@childrens.harvard.edu
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Abstract

Background:

There are little reported data on the perspectives of fathers caring for children with chronic conditions. Although survival of children with advanced heart disease has improved, long-term morbidity remains high. This study describes the experience and prognostic awareness of fathers of hospitalised children with advanced heart disease.

Methods:

Cross-sectional survey study of parents caring for children hospitalised with advanced heart disease admitted for ≥ 7 days over a one-year period. One parent per patient completed surveys, resulting in 27 father surveys. Data were analysed using descriptive methods.

Results:

Nearly all (96%) of the fathers reported understanding their child’s prognosis “extremely well” or “well,” and 59% felt they were “very prepared” for their child’s medical problems. However, 58% of fathers wanted to know more about prognosis, and 22% thought their child’s team knew something about prognosis that they did not. Forty-one per cent of fathers did not think that their child would have lifelong limitations, and 32% anticipated normal life expectancies. All 13 fathers who had a clinical discussion of what would happen if their child got sicker found this conversation helpful. Nearly half (43%) of the fathers receiving new prognostic information or changes to treatment course found it “somewhat” or “a little” confusing.

Conclusions:

Fathers report excellent understanding of their child’s illness and a positive experience around expressing their hopes and fears. Despite this, there remain many opportunities to improve communication, prognostic awareness, and participation in informed decision-making of fathers of children hospitalised with advanced heart disease.

Keywords

FathersCHDchildrenpalliative careprognosisparents
Type
Original Article
Information
Cardiology in the Young , First View , pp. 1 - 5
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Copyright
© The Author(s), 2024. Published by Cambridge University Press

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Footnotes

*

Chase Samsel and Jeffery R. Reichman shared co-first authorship.

References

Swallow, V, Macfadyen, A, Santacroce, SJ, Lambert, H. Fathers' contributions to the management of their child’s long-term medical condition: a narrative review of the literature. Health Expect 2012; 15: 157–175. DOI: 10.1111/j.1369-7625.2011.00674.x.CrossRefGoogle Scholar
Biber, S, Andonian, C, Beckmann, J, et al. Current research status on the psychological situation of parents of children with congenital heart disease. Cardiovasc Diagn Ther 2019; 9: S369–S376. DOI: 10.21037/cdt.2019.07.07.CrossRefGoogle ScholarPubMed
McNeil, MJ, Baker, JN, Snyder, I, Rosenberg, AR, Kaye, EC. Grief and bereavement in fathers after the death of a child: a systematic review. Pediatrics 2021; 147: e2020040386. DOI: 10.1542/peds.2020-040386.CrossRefGoogle ScholarPubMed
Robinson, JE, Huskey, D, Schwartz, J, Weaver, MS. The many roles of the rock: a qualitative inquiry into the roles and responsibilities of fathers of children with brain tumors. Children (Basel) 2019; 6: 113. DOI: 10.3390/children6100113.Google Scholar
Hansen, JA, Weissbrod, C, Schwartz, DD, Taylor, WP. Paternal involvement in pediatric type 1 diabetes: fathers' and mothers' psychological functioning and disease management. Fam Syste Health 2012; 30: 47–59.CrossRefGoogle ScholarPubMed
Robinson, J, Huskey, D, Schalley, S, Wratchford, D, Hammel, J, Weaver, M. Discovering dad: paternal roles, responsibilities, and support needs as defined by fathers of children with complex cardiac conditions perioperatively. Cardiol Young 2019; 29: 1143–1148. DOI: 10.1017/S1047951119001586.CrossRefGoogle ScholarPubMed
Morell, E, Moynihan, K, Wolfe, J, Blume, ED. Palliative care and paediatric cardiology: current evidence and future directions. Lancet Child Adolesc Heal 2019; 3: 502–510. DOI: 10.1016/S2352-4642(19)30121-X.CrossRefGoogle ScholarPubMed
Morell, E, Miller, MK, Lu, M, et al. Parent and physician understanding of prognosis in hospitalized children with advanced heart disease. J Am Heart Assoc 2021; 10: e018488. DOI: 10.1161/JAHA.120.018488.CrossRefGoogle ScholarPubMed
Miller, MK, Blume, ED, Samsel, C, et al. Parent-provider communication in hospitalized children with advanced heart disease. Pediatr Cardiol 2022; 43: 1761–1769. DOI: 10.1007/s00246-022-02913-0.CrossRefGoogle ScholarPubMed
Harris, PA, Taylor, R, Thielke, R, Payne, J, Gonzalez, N, Conde, JG. Research electronic data capture (REDCap)-A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377–381. DOI: 10.1016/j.jbi.2008.08.010.CrossRefGoogle ScholarPubMed
Harris, PA, Taylor, R, Minor, BL, et al. The REDCap consortium: building an international community of software partners. J Biomed Inform 2019; 95: 103208. DOI: 10.1016/j.jbi.2019.103208.CrossRefGoogle ScholarPubMed
U.S. Bureau of Labor Statistics, Employment Characteristics of Families Summary, economic news release, https://www.bls.gov/news.release/famee.nr0.htm. Accessed April 19, 2023.Google Scholar
McKelley, RA, Rochlen, AB. Furthering fathering: What we know and what we need to know. In: Wester, YJWSR (eds). APA Handbook of Men and Masculinities. American Psychological Association, Washington, DC, US, 2016: 525–549.CrossRefGoogle Scholar
Goffman, E. The Presentation of Self in Everyday Life. Doubleday, New York, 1956.Google Scholar
Courtenay, W. Dying to Be Men: Psychosocial, Environmental and Biobehavioral Directions in Promoting the Health of Men and Boys. Routledge, New York, NY, 2011.CrossRefGoogle Scholar
Newburger, JW, Sleeper, LA, Bellinger, DC, et al. Early developmental outcome in children with hypoplastic left heart syndrome and related anomalies: the single ventricle reconstruction trial. Circulation 2012; 125: 2081–2091.CrossRefGoogle ScholarPubMed
Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.CrossRefGoogle ScholarPubMed
Mellion, K, Uzark, K, Cassedy, A, et al. Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781–788.e1.CrossRefGoogle ScholarPubMed
Yogman, M, Garfield, CF, Gambon, TB, Committee on Psychosocial Aspects of Child and Family Health, et al. Fathers’ roles in the care and development of their children: the role of pediatricians. Pediatrics 2016; 138: e20161128. DOI: 10.1542/peds.2016-1128.CrossRefGoogle ScholarPubMed
Lee, JY, Knauer, HA, Lee, SJ, MacEachern, MP, Garfield, CF. Father-inclusive perinatal parent education programs: a systematic review. Pediatrics 2018; 142: e20180437. DOI: 10.1542/peds.2018-0437.CrossRefGoogle ScholarPubMed