Advertisement

Nursing Research and Quality Improvement Initiatives for Patients with Congenital Heart Disease

  • Federica Dellafiore
  • Eva Goossens
Chapter

Abstract

The population of adults with congenital heart disease (CHD) is rapidly growing as extensive improvements in congenital cardiology and heart surgery have created new groups of children surviving into adolescence and adulthood. With improvement of clinical outcomes, involvement of nurses in research and quality initiatives has expanded over the past decades. Such initiatives aim to improve the provision of evidence-based nursing care for patients with CHD along their life span.

The role of a clinical nurse specialist is described to be foundational for the delivery of high-quality, effective, compassionate health care, where provision of interdisciplinary clinical practice is closely linked to the newest research insights. The role of advanced practice nurses (APN) is recognized to be a cornerstone in the provision of holistic patient care. The task set of such advanced nursing roles include performance of comprehensive assessment of patients’ needs, counseling activities regarding education, employment, family planning, and supporting the development of self-management and coping strategies.

In order to provide patient-tailored care, a comprehensive understanding of patients’ needs is crucial to manage the diversity and complexity of CHD care and to support the unique clinical needs and challenges encountered by this patient population. The main topics investigated by nursing research over the recent years were CHD lived experiences, quality of life, parenting of patients, and transitional care. Although the field of nursing research expanded tremendously over the past decades, important gaps in our knowledge and evidence base remain, however, pertinent. Further empirical investigations are mandatory to gain a full understanding of important aspects of effective nursing care for patients with CHD and enlarge the evidence-base supporting quality improvement initiatives.

References

  1. 1.
    Iacona G, Giamberti A, Abella R, Pomè G, Agredo J, Mendieta S, et al. Paediatric cardiac surgery in a peripheral European region: is a joint programme a safe alternative to regionalisation? Cardiol Young. 2017;27(2):273–83.CrossRefPubMedGoogle Scholar
  2. 2.
    Tchervenkov CI, Jacobs JP, Bernier P-L, Stellin G, Kurosawa H, Mavroudis C, et al. The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiol Young. 2008;18(S2):63.CrossRefGoogle Scholar
  3. 3.
    O’Brien P. The role of the nurse practitioner in congenital heart surgery. Pediatr Cardiol. 2007;28(2):88–95.CrossRefPubMedGoogle Scholar
  4. 4.
    Goossens E, Fleck D, Canobbio MM, Harrison JL, Moons P. Development of an international research agenda for adult congenital heart disease nursing. Eur J Cardiovasc Nurs. 2012;12(1):7–16.CrossRefPubMedGoogle Scholar
  5. 5.
    Moons P, Scholte op Reimer W, De Geest S, Fridlund B, Heikkila J, Jaarsma T, et al. Nurse specialists in adult congenital heart disease: the current status in Europe. Eur J Cardiovasc Nurs. 2006;5(1):60–7.CrossRefPubMedGoogle Scholar
  6. 6.
    Moons P, De Geest S, Budts W. Comprehensive care for adults with congenital heart disease: expanding roles for nurses. Eur J Cardiovasc Nurs. 2002;1(1):23–8.CrossRefPubMedGoogle Scholar
  7. 7.
    Tingen MS, Burnett AH, Murchison RB, Zhu H. The importance of nursing research. J Nurs Educ. 2009;48(3):167–70.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Kantor PF, Lougheed J, Dancea A, McGillion M, Barbosa N, Chan C, et al. Presentation, diagnosis, and medical management of heart failure in children: Canadian Cardiovascular Society guidelines. Can J Cardiol. 2013;29(12):1535–52.CrossRefPubMedGoogle Scholar
  9. 9.
    Ntiloudi D, Giannakoulas G, Parcharidou D, Panagiotidis T, Gatzoulis MA, Karvounis H. Adult congenital heart disease: a paradigm of epidemiological change. Int J Cardiol. 2016;218:269–74.CrossRefPubMedGoogle Scholar
  10. 10.
    Torok RD, Campbell MJ, Fleming GA, Hill KD. Coarctation of the aorta: management from infancy to adulthood. World J Cardiol. 2015;7(11):765.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Chen C-W, Su W-J, Chiang Y-T, Shu Y-M, Moons P. Healthcare needs of adolescents with congenital heart disease transitioning into adulthood: a Delphi survey of patients, parents, and healthcare providers. Eur J Cardiovasc Nurs. 2017;16(2):125–35.CrossRefPubMedGoogle Scholar
  12. 12.
    Baumgartner H, Bonhoeffer P, De Groot NMS, de Haan F, Deanfield JE, Galie N, et al. ESC guidelines for the management of grown-up congenital heart disease (new version 2010): the task force on the management of grown-up congenital heart disease of the European Society of Cardiology (ESC). Eur Heart J. 2010;31(23):2915–57.CrossRefPubMedGoogle Scholar
  13. 13.
    van der Bom T, Zomer AC, Zwinderman AH, Meijboom FJ, Bouma BJ, Mulder BJM. The changing epidemiology of congenital heart disease. Nat Rev Cardiol. 2011;8(1):50–60.CrossRefPubMedGoogle Scholar
  14. 14.
    Flocco SF, Caruso R, Dellafiore F, Orlando A, Magon A, Giamberti A, et al. Towards the standardization of transition care models for adolescents with congenital heart disease (CHD): a perspective. J Clin Exp Cardiol. 2017;8(1):1–3.CrossRefGoogle Scholar
  15. 15.
    Bertoletti J, Marx GC, Hattge Júnior SP, Pellanda LC. Quality of life and congenital heart disease in childhood and adolescence. Arq Bras Cardiol. 2014;102(2):192–8.PubMedPubMedCentralGoogle Scholar
  16. 16.
    Berghammer M. Living with a congenital heart disease-adolescents’ and young adults’ experiences. Gothenburg: Komendiet; 2012.Google Scholar
  17. 17.
    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(1):3–10.CrossRefPubMedGoogle Scholar
  18. 18.
    Connor JA, Kline NE, Mott S, Harris SK, Jenkins KJ. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care. 2010;24(5):318–25.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Harvey KA, Kovalesky A, Woods RK, Loan LA. Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery. Heart Lung. 2013;42(6):399–406.CrossRefGoogle Scholar
  20. 20.
    Rychik J, Donaghue DD, Levy S, Fajardo C, Combs J, Zhang X, et al. Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr. 2013;162(2):302–7.CrossRefPubMedGoogle Scholar
  21. 21.
    Sabzevari S, Nematollahi M, Mirzaei T, Ravari A. The burden of care: mothers’ experiences of children with congenital heart disease. Int J Community Based Nurs Midwifery. 2016;4(4):374–85.PubMedGoogle Scholar
  22. 22.
    Noblit G, Hare R. Meta-ethnography: synthesizing qualitative studies. Beverly Hills: Sage; 1988.CrossRefGoogle Scholar
  23. 23.
    Dellafiore F, Pittella F, Flocco FS, Caruso MP, Bersani V, Cimini A, et al. What about life experiences of congenital heart disease adolescents’ parents? A literature review and meta-synthesis. Cardiol Young. 2016;26(Suppl 1):S180.Google Scholar
  24. 24.
    Hays L. Transition to adult congenital heart disease care: a review. J Pediatr Nurs. 2015;30(5):e63–9.CrossRefPubMedGoogle Scholar
  25. 25.
    Moceri P, Goossens E, Hascoet S, Checler C, Bonello B, Ferrari E, et al. From adolescents to adults with congenital heart disease: the role of transition. Eur J Pediatr. 2015;174(7):847–54.CrossRefPubMedGoogle Scholar
  26. 26.
    American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304–6.Google Scholar
  27. 27.
    Betz CL. Health care transition for adolescents with special healthcare needs: where is nursing? Nurs Outlook. 2013;61(5):258–65.CrossRefPubMedGoogle Scholar
  28. 28.
    Reid GJ, Webb GD, McCrindle BW, Irvine MJ, Siu SC. Health behaviors among adolescents and young adults with congenital heart disease. Congenit Heart Dis. 2008;3(1):16–25.CrossRefPubMedGoogle Scholar
  29. 29.
    Karsdorp PA, Everaerd W, Kindt M, Mulder BJM. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol. 2007;32(5):527–41.CrossRefPubMedGoogle Scholar
  30. 30.
    Moons P, Meijboom FJ, Baumgartner H, Trindade PT, Huyghe E, Kaemmerer H, et al. Structure and activities of adult congenital heart disease programmes in Europe. Eur Heart J. 2010;31(11):1305–10.CrossRefPubMedGoogle Scholar
  31. 31.
    Hess J, Bauer U, De Haan F, Flesch J. Empfehlungen für Erwachsenen-und Kinderkardiologen zum Erwerb der Zusatz-Qualifikation “Erwachsene mit angeborenen Herzfehlern” (EMAH). Clin Res Cardiol. 2007;2(1):19–26.Google Scholar
  32. 32.
    Landzberg MJ, Murphy DJ, Davidson WR, Jarcho JA, Krumholz HM, Mayer JE, et al. Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol. 2001;37(5):1187–93.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Health Professions Research and Development UnitIRCCS Policlinico San DonatoSan Donato Milanese (MI)Italy
  2. 2.Department of Public Health and Primary CareAcademic Center for Nursing and Midwifery, KU LeuvenLeuvenBelgium
  3. 3.Research Foundation Flanders (FWO)BrusselsBelgium

Personalised recommendations