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Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease

Published online by Cambridge University Press:  12 November 2020

Jennifer K. Peterson Open the ORCID record for Jennifer K. Peterson [Opens in a new window] ,
Ellen F. Olshansky ,
Yuqing Guo ,
Lorraine S. Evangelista  and
Nancy A. Pike
Jennifer K. Peterson*
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, MD, USA
Ellen F. Olshansky
Affiliation:
Sue and Bill Gross School of Nursing, University of California, Irvine, CA, USA
Yuqing Guo
Affiliation:
Sue and Bill Gross School of Nursing, University of California, Irvine, CA, USA
Lorraine S. Evangelista
Affiliation:
University of Texas Medical Branch School of Nursing, Galveston, TX, USA
Nancy A. Pike
Affiliation:
School of Nursing, University of California, Los Angeles, CA, USA Cardiothoracic Surgery, Children’s Hospital, Los Angeles, CA, USA
*
Author for correspondence: J. K. Peterson, PhD, APRN-CNS, CCNS, Johns Hopkins University School of Nursing, 525 North Wolfe St, Room 460, Baltimore, MD 21205, USA. Tel: +410 614 9242; Fax: +410 955 7463. E-mail: jpete107@jhu.edu
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Abstract

Background:

Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.

Methods:

A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.

Results:

Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including “Don’t assume”: Pervasive ableism; “The elephant in the room”: Uncertain future; “Everyone finds something to pick on”: Bullying at school; “They know what I have been through”: Social support. The overall essence generated from the data was “optimism despite profound uncertainty.”

Conclusions:

Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect “optimism despite profound uncertainty.”

Keywords

Fontan procedurequalitative researchacademic achievementpeer relationships
Type
Original Article
Information
Cardiology in the Young , Volume 31 , Issue 2 , February 2021 , pp. 252 - 259
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Schilling, C, Dalziel, K, Nunn, R, et al. The Fontan epidemic: Population projections from the Australia and New Zealand Fontan Registry. Int J Cardiol. 2016; 219: 14–19. doi: 10.1016/j.ijcard.2016.05.035 CrossRefGoogle ScholarPubMed
Pundi, KN, Johnson, JN, Dearani, JA, et al. 40-year follow-up after the Fontan operation: Long-term outcomes of 1,052 patients. J Am Coll Cardiol. 2015; 66: 1700–10. doi: 10.1016/j.jacc.2015.07.065 CrossRefGoogle ScholarPubMed
Gewillig, M, Goldberg, DJ. Failure of the Fontan circulation. Heart Fail Clin. 2014; 10: 105–16. doi: 10.1016/j.hfc.2013.09.010 CrossRefGoogle ScholarPubMed
Kreutzer, C, Kreutzer, G. The lymphatic system: The Achilles Heel of the Fontan-Kreutzer circulation. World J Pediatr Congenit Heart Surg. 2017; 8: 613–23. doi: 10.1177/2150135117720685 CrossRefGoogle ScholarPubMed
Rychik, J, Atz, AM, Celermajer, DS, et al. Evaluation and management of the child and adult with Fontan circulation: A Scientific Statement from the American Heart Association. Circulation. 2019; 140: e234–e284. doi: 10.1161/CIR.0000000000000696 CrossRefGoogle Scholar
Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management a Scientific Statement From the American Heart Association. Circulation. 2012; 126: 1143–72. doi: 10.1161/CIR.0b013e318265ee8a CrossRefGoogle ScholarPubMed
Kharitonova, M, Marino, BS. An emergent phenotype: A critical review of neurodevelopmental outcomes for complex congenital heart disease survivors during infancy, childhood, and adolescence. In Congenital Heart Dis Neurodevelopment. Elsevier; 2016: 55–87. doi: 10.1016/B978-0-12-801640-4.00005-6 CrossRefGoogle Scholar
Pike, NA, Roy, B, Gupta, R, et al. Brain abnormalities in cognition, anxiety, and depression regulatory regions in adolescents with single ventricle heart disease. J Neurosci Res. 2018; 96: 1104–18. doi: 10.1002/jnr.24215 CrossRefGoogle ScholarPubMed
DeMaso, DR, Calderon, J, Taylor, GA, et al. Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics. 2017; 139. doi: 10.1542/peds.2016-2241 CrossRefGoogle ScholarPubMed
Hövels-Gürich, HH, McCusker, C. Neurodevelopmental patterns in congenital heart disease across childhood: Longitudinal studies from Europe. In: McCusker, C, Casey, F, eds. Congenital Heart Disease and Neurodevelopment. Academic Press; 2016: 41–53. doi: 10.1016/B978-0-12-801640-4.00004-4 CrossRefGoogle ScholarPubMed
Bellinger, DC, Watson, CG, Rivkin, MJ, et al. Neuropsychological status and structural brain imaging in adolescents with single ventricle who underwent the Fontan procedure. J Am Heart Assoc Cardiovasc Cerebrovasc Dis. 2015; 4. doi: 10.1161/JAHA.115.002302 Google ScholarPubMed
Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics. 2000; 105: 1082–89. doi: 10.1542/peds.105.5.1082 CrossRefGoogle ScholarPubMed
Pittet, I, Berchtold, A, Akre, C, Michaud, P-A, Suris, J-C. Are adolescents with chronic conditions particularly at risk for bullying? Arch Dis Child. 2010; 95: 711–16. doi: 10.1136/adc.2008.146571 CrossRefGoogle ScholarPubMed
Bellinger, DC. Are children with congenital cardiac malformations at increased risk of deficits in social cognition? Cardiol Young. 2008; 18: 3–9. doi: 10.1017/S104795110700176X CrossRefGoogle ScholarPubMed
Maslow, GR, Haydon, A, McRee, A-L, Ford, CA, Halpern, CT. Growing up with a chronic illness: social success, educational/vocational distress. J Adolesc Health Off Publ Soc Adolesc Med. 2011; 49: 206–12. doi: 10.1016/j.jadohealth.2010.12.001 CrossRefGoogle ScholarPubMed
Maslow, GR, Haydon, A, Ford, CA, Halpern, CT. Young adult outcomes of children growing up with chronic illness: An analysis of the National Longitudinal Study of Adolescent Health. Arch Pediatr Adolesc Med. 2011; 165: 256–61. doi: 10.1001/archpediatrics.2010.287 CrossRefGoogle ScholarPubMed
Husserl, E. Logical Investigations. Vol 1. Humanities Press; 1970.Google Scholar
Christensen, M, Welch, A, Barr, J. Husserlian descriptive phenomenology: A review of intentionality, reduction and the natural attitude. J Nurs Educ Pract. 2017; 7: 113. doi: 10.5430/jnep.v7n8p113 CrossRefGoogle Scholar
Creswell, JW, Poth, CN. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. 4th Edition. SAGE Publications, Inc; 2017.Google Scholar
Christensen, M. The empirical-phenomenological research framework: Reflecting on its use. J Nurs Educ Pract. 2017; 7: 81. doi: 10.5430/jnep.v7n12p81 CrossRefGoogle Scholar
Cabrera-Mino, C, Roy, B, Woo, MA, et al. Reduced brain mammillary body volumes and memory deficits in adolescents who have undergone the Fontan procedure. Pediatr Res. Published online September 9, 2019. doi: 10.1038/s41390-019-0569-3 Google ScholarPubMed
Morse, JM. The significance of saturation. Qual Health Res. 1995; 5: 147–49. doi: 10.1177/104973239500500201 CrossRefGoogle Scholar
Hennink, MM, Kaiser, BN, Marconi, VC. Code saturation versus meaning saturation: How many interviews are enough? Qual Health Res. Published online September 25, 2016. doi: 10.1177/1049732316665344 Google Scholar
Giorgi, A. The Descriptive Phenomenological Method in Psychology: A Modified Husserlian Approach. Duquesne University Press; 2009.Google Scholar
NVivo qualitative data analysis software | QSR International. Accessed June 6, 2019. https://www.qsrinternational.com/nvivo/home Google Scholar
Guba, EG, Lincoln, YS. Epistemological and methodological bases of naturalistic inquiry. ECTJ. 1982; 30: 233–52. doi: 10.1007/BF02765185 Google Scholar
Cypress, BS. Rigor or reliability and validity in qualitative research: Perspectives, strategies, reconceptualization, and recommendations. Dimens Crit Care Nurs. 2017; 36: 253–63. doi: 10.1097/DCC.0000000000000253 CrossRefGoogle ScholarPubMed
Berghammer, MC, Brink, E, Rydberg, AM, Dellborg, M, Ekman, I. Committed to life: Adolescents’ and young adults’ experiences of living with Fontan circulation. Congenit Heart Dis. 2015; 10: 403–12. doi: 10.1111/chd.12244 CrossRefGoogle Scholar
Overgaard, D, King, C, Christensen, RF, Schrader, A-M, Adamsen, L. Living with half a heart--experiences of young adults with single ventricle physiology: a qualitative study. J Cardiovasc Nurs. 2013; 28: 187–96. doi: 10.1097/JCN.0b013e3182498677 CrossRefGoogle ScholarPubMed
Pike, NA, Evangelista, LS, Doering, LV, Eastwood, J-A, Lewis, AB, Child, JS. Quality of life, health status, and depression: comparison between adolescents and adults after the Fontan procedure with healthy counterparts. J Cardiovasc Nurs. 2012; 27: 539–46. doi: 10.1097/JCN.0b013e31822ce5f6 CrossRefGoogle ScholarPubMed
du Plessis, K, Peters, R, King, I, et al. “How long will I continue to be normal?” Adults with a Fontan circulation’s greatest concerns. Int J Cardiol. 2018; 260: 54–59. doi: 10.1016/j.ijcard.2018.01.098 CrossRefGoogle Scholar
Claessens, P, Moons, P, de Casterlé, BD, Cannaerts, N, Budts, W, Gewillig, M. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. Eur J Cardiovasc Nurs. 2005; 4: 3–10. doi: 10.1016/j.ejcnurse.2004.12.003 CrossRefGoogle ScholarPubMed
Chiang, YT, Chen, CW, Su, WJ, et al. Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease. J Adv Nurs. 2015; 71: 599–608. doi: 10.1111/jan.12546 CrossRefGoogle Scholar
Cornett, L, Simms, J. At the ‘heart’ of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood. J Health Psychol. 2014; 19: 393–406. doi: 10.1177/1359105312471569 CrossRefGoogle ScholarPubMed
Lee, S, Kim, S-S. The life experiences of Korean children and adolescents with complex congenital heart disease: A qualitative study: Life experiences of patients. Nurs Health Sci. 2012; 14: 398–404. doi: 10.1111/j.1442-2018.2012.00709.x CrossRefGoogle Scholar
McMurray, R, Kendall, L, Parsons, JM, et al. A life less ordinary: growing up and coping with congenital heart disease. Coron Health Care. 2001; 5: 51–57. doi: 10.1054/chec.2001.0112 CrossRefGoogle Scholar
Shearer, K, Rempel, GR, Norris, CM, Magill-Evans, J. “It’s no big deal”: Adolescents with congenital heart disease. J Pediatr Nurs. 2013; 28: 28–36. doi: 10.1016/j.pedn.2012.03.031 CrossRefGoogle ScholarPubMed
Zahmacioglu, O, Yildiz, CE, Koca, B, et al. Coming from behind to win--a qualitative research about psychological conditions of adolescents who have undergone open-heart surgery for single ventricle between the ages 0-5. J Cardiothorac Surg. 2011; 6: 155. doi: 10.1186/1749-8090-6-155 CrossRefGoogle Scholar
Friedman, C, Owen, AL. Defining disability: Understandings of and attitudes towards ableism and disability. Disabil Stud Q. 2017; 37. doi: 10.18061/dsq.v37i1.5061 CrossRefGoogle Scholar
Wendell, S. Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia. 2001; 16: 17–33. doi: 10.1111/j.1527-2001.2001.tb00751.x CrossRefGoogle Scholar
McCabe, EM. School nurses’ role in self-management, anticipatory guidance, and advocacy for students with chronic illness. NASN Sch Nurse. Published online February 18, 2020: 1942602X2090653. doi: 10.1177/1942602X20906534 Google ScholarPubMed
Holmes, BW, Duncan, PM. Promoting the health of adolescents. In: McIlnerny, TK, Adam, HM, Campbell, D, DeWitt, TG, Foy, JM, Kamat, D, eds. American Academy of Pediatrics Textbook of Pediatric Care. 2nd ed. American Academy of Pediatrics; 2017: 187–91.Google Scholar
Balk, DE. Dealing with Dying, Death, and Grief during Adolescence. 1st Edition. Routledge; 2014.CrossRefGoogle Scholar
Bullying Statistics. Published 2017. Accessed April 20, 2019. https://www.pacer.org/bullying/resources/stats.asp Google Scholar
Gerstle, M, Beebe, DW, Drotar, D, Cassedy, A, Marino, BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr. 2016; 173: 154–59. doi: 10.1016/j.jpeds.2016.01.028 CrossRefGoogle ScholarPubMed
Oris, L, Seiffge-Krenke, I, Moons, P, et al. Parental and peer support in adolescents with a chronic condition: a typological approach and developmental implications. J Behav Med. 2016; 39: 107–19. doi: 10.1007/s10865-015-9680-z CrossRefGoogle ScholarPubMed
McCarthy, A. Summer camp for children and adolescents with chronic conditions. Pediatr Nurs. 2015; 41: 245–50.Google ScholarPubMed
Desai, PP, Sutton, LJ, Staley, MD, Hannon, DW. A qualitative study exploring the psychosocial value of weekend camping experiences for children and adolescents with complex heart defects. Child Care Health Dev. 2014; 40: 553–61. doi: 10.1111/cch.12056 CrossRefGoogle ScholarPubMed
Bultas, MW, Budhathoki, C, Balakas, K. Evaluation of child and parent outcomes after a pediatric cardiac camp experience. J Spec Pediatr Nurs. 2013; 18: 320–28. doi: 10.1111/jspn.12040 CrossRefGoogle ScholarPubMed
Menesini, E, Salmivalli, C. Bullying in schools: the state of knowledge and effective interventions. Psychol Health Med. 2017; 22(supp 1):240–53. doi: 10.1080/13548506.2017.1279740 CrossRefGoogle ScholarPubMed
Sanders, RA. Adolescent psychosocial, social, and cognitive development. Pediatr Rev. 2013; 34: 354–59. doi: 10.1542/pir.34-8-354 CrossRefGoogle ScholarPubMed
Longmuir, PE, Brothers, JA, Ferranti, SD de, et al. Promotion of physical activity for children and adults with congenital heart disease. Circulation. 2013; 127: 2147–59. doi: 10.1161/CIR.0b013e318293688f CrossRefGoogle ScholarPubMed
Pike, NA, Poulsen, MK, Woo, MA. Validity of the Montreal Cognitive Assessment screener in adolescents and young adults with and without congenital heart disease. Nurs Res. 2017; 66: 222–30. doi: 10.1097/NNR.0000000000000192 CrossRefGoogle Scholar
School Intervention Program | Children’s Hospital of Wisconsin. Published 2019. Accessed April 27, 2019. https://chw.org/medical-care/herma-heart/programs/school-intervention-program Google Scholar
Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011; 123: 1454–85. doi: 10.1161/CIR.0b013e3182107c56 CrossRefGoogle ScholarPubMed