1. Hoffman, JL, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.
2. Gillum, RF. Epidemiology of congenital heart disease in the United States. Am Heart J 1994; 127 (Pt 1): 919–927.
3. Melnyk, BM, Alpert-Gillis, L, Feinstein, NF, et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics 2004; 113: e597–e607.
4. Manne, SL, Du Hamel, K, Gallelli, K, Sorgen, K, Redd, WH. Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. J Pediatr Psychol 1998; 23: 357–366.
5. Morgan, GJ, Craig, B, Grant, B, Sands, A, Doherty, N, Casey, F. Home videoconferencing for patients with severe congenital heart disease following discharge. Congenit Heart Dis 2008; 3: 317–324.
6. Vilhjalmsson, R., Kristjansdottir, G. Sociodemographic variables in parental role strain: Results from a national general population survey. Scand J of Pub Health 2006; 34: 262–271.
7. Visconti, KJ, Saudino, KJ, Rappaport, LA, Newberger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. Dev Behav Pediatr 2002; 23: 314–321.
8. Breslau, N, Staruch, KS, Mortimer, EA Jr. Psychological distress in mothers of disabled children. Am J Dis Child 1982; 136: 682–686.
9. Hintermair, M. Children who are hearing impaired with additional disabilities and related aspects of parental stress. Exceptional Child 2000; 66: 327–334.
10. Hartman, D, Medoff-Cooper, B. Transition to home after neonatal surgery for congenital heart disease. MCN Am J Matern Child Nurs 2012; 37: 95–100.
11. Ghanayem, NS, Cava, JR, Jaquiss, RD, Tweddell, JS. . Home monitoring of infants after stage one palliation for hypoplastic left heart syndrome. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 32–38.
12. Tregay, J, Brown, KL, Crowe, S, et al. Signs of deterioration infants discharged home following congenital heart surgery in the first year of life: a qualitative study. Arch Dis Child 2016; 101: 902–908.
13. Anderson, JB, Marino, BS, Irving, SY, et al. Poor post-operative growth in infants with two-ventricle physiology. Cardiol Young 2011; 21: 421–429.
14. Ghanayem, NS, Hoffman, GM, Mussatto, KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg 2003; 126: 1367–1377.
15. Carlo, WF, Cnota, J, Dabal, RJ, Anderson, JB. Practice trends overtime in the care of infants with hypoplastic left heart syndrome: a report from the national Pediatric Cardiology Quality Improvement Collaborative. Congenit Heart Dis 2017; 12: 315–321.
16. Ugonabo, N, Hirsch-Romano, JC, Uzark, K. The role of home monitoring in interstage management of infants following the Norwood procedure. World J Pediatr Congenit Heart Surg 2015; 6: 266–273.
17. Nieves, JA, Uzark, K, Rudd, NA, Starwn, J, Schmelzer, A, Dobrolet, N. Interstage home monitoring after newborn first-stage palliation for hypoplastic left heart syndrome: family education strategies. Crit Care Nurse, 37: 72–88.
18. Weston, C, Adil Husain, S, Curzon, CL, et al. Improving outcomes for infants with single ventricle physiology through standardized feeding during the interstage. Nurs Res Pract, 2016; Article ID 9505629, 7 pages.
19. Rudd, N, Fommelt, MA, Hehir, DA, Slicker, JA, Mussatto, KA, Ghanayem, NS. Improving interstage survival after Norwood operation: outcomes following 10 years of home monitoring. J Thorac Cardiovasc Surg 2014; 148: 1540–1547.
20. Harahshesh, AS, Hom, LA, Clauss, SB, et al. The impact of a designated cardiology team involving telemedicine home monitoring on the care of children with single-ventricle physiology after Norwood palliation. Pediatr Cardiol 2016; 37: 899–912.
21. Petit, CJ, Fraser, CD, Mattamal, R, Slesnick, TC, Cephus, CE, Ocampo, EC. The impact of a dedicated single-ventricle home-monitoring program on interstage somatic growth, interstage attrition, and 1-year survival. J Thorac Cardiovasc Surg, 142: 1358–1366.
22. Stoffel, G, Spirig, R, Stiasny, B, Bernet, V, Dave, H, Knirsch, W. Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period – a prospective mixed-method study. J Clin Nurs 2016; 26: 3363–3370.
23. Grabowski, DC, O’Malley, AJ. Use of telemedicine can reduce hospitalizations of nursing home residents and generate savings for Medicare. Health Aff 2014; 33: 244–250.
24. Thomas, CL, Man, MS, O’Cathain, A. Effectiveness and cost-effectiveness of a telehealth intervention to support the management of long term conditions: study protocol for two linked randomized controlled trials. Trials 2014; 24: 15–36.
25. Tappenden, P, Campbell, F, Rawdin, A, Wong, R, Kalita, N. The clinical effectiveness and cost-effectiveness of home-based, nurse led health promotion for older people: a systematic review. Health Technol Assess 2012; 16: 1–72.
26. McCrossan, B, Morgan, G, Grant, B, Sands, A, Craig, B, Casey, F. Assisting the transition from hospital to home for children with major congenital heart disease by telemedicine: a feasibility study and initial results. Medical Informatics & the Internet in Medicine 2007; 232: 97–304.
27. Bowles, KH, Holland, DE, Horowitz, DA. A comparison of in-person home care, home care with telephone contact and home care with telemonitoring for disease management. J Telemed Telecare 2009; 15: 344–350.
28. Dehghani, P, Atallah, J, Rebeyka, I, et al. Management of adults with congenital heart disease using videoconferencing across Western Canada: a 3-year experience. Can J Cardiol 2013; 29: 873–878.
29. Adriaanse, BM, Tromp, CH, Simpson, JM, et al. Interobserver agreement in detailed prenatal diagnosis of congenital heart disease by telemedicine using four-dimensional ultrasound with spatiotemporal image correlation. Ultrasound Obstet Gynecol 2012; 39: 203–209.
30. de Jongh, T, Gurol-Urganci, I, Vodopivec-Jamsek, V, Car, J, Atun, R. Mobile phone messaging for facilitating self-management of long-term illnesses. Cochrane Database Syst Rev 2012; 12: CD007459.
31. Grant, B, Morgan, GJ, McCrossan, BA, et al. Remote diagnosis of congenital heart disease: the impact of telemedicine. Arch Dis Child 2009; 95: 276–280.
32. Black, AK, Sadanala, UK, Mascio, CE, Hornung, CA, Keller, BB. Challenges in implementing a pediatric cardiovascular home Telehealth project. Telemed e-Health 2014; 20: 858–867.
33. Cross, R., Steury, R, Randall, A, Fuska, M, Sable, C. Single-ventricle palliation for high-risk neonates: examining the feasibility of an automated home monitoring system after Stage 1 palliation. Future Cardiol 2012; 8: 227–235.
34. Abiden, R. Parenting Stress Index Long Form: Test Manual. Western Psychological Services, Los Angeles, 1990.
35. Goldbeck, L, Melches, J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915–1924.
36. Vaglio, J Jr., Conard, M, Poston, WS, et al. Testing the performance of the ENRICHD Social Support Instrument in cardiac patients. Health Qual Life Outcomes 2004; 2: 24.
37. Medoff-Cooper, B, Carey, WB, McDevitt, SC. The early infancy temperament questionnaire. J Dev Behav Pediatr 1993; 14: 230–235.
38. Wright, CM, Parkinson, KN, Drewett, RF. How does maternal and child feeding behavior relate to weight gain and failure to thrive? Data from a prospective birth cohort. Pediatrics 2006; 117: 1262–1269.
39. Beller, E, Gebski, V, Keech, A. Randomization in clinical trials. Med J Aust 2002; 177: 565–568.
40. Selvin, S. Statistical Analysis of Epidemiologic Data, 3rd edn. Oxford University Press, Oxford, 2004.
41. Greene, W. Econometric Analysis, 6th edn. Prentice Hall, Upper Saddle River, NJ, 2008.