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Parental stress and resilience in CHD: a new frontier for health disparities research

Published online by Cambridge University Press:  11 July 2018

Amy J. Lisanti
Amy J. Lisanti*
Affiliation:
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA Cardiac Nursing, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
*
Author for correspondence: A. J. Lisanti, University of Pennsylvania, 418 Curie Blvd, Philadelphia, PA 19104, USA. Fax: 215 573 9193; E-mail: [email protected]
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Abstract

Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child’s illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

Keywords

ParentstressresilienceCHDhealth disparities
Type
Original Article
Information
Cardiology in the Young , Volume 28 , Issue 9 , September 2018 , pp. 1142 - 1150
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Copyright
© Cambridge University Press 2018 

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Footnotes

Cite this article: Lisanti AJ. (2018) Parental stress and resilience in CHD: a new frontier for health disparities research. Cardiology in the Young28: 1142–1150. doi: 10.1017/S1047951118000963

References

1. Berkowitz, B, McCubbin, M. Advancement of health disparities research: a conceptual approach. Nurs Outlook 2005; 53: 153–159.Google Scholar
2. Flaskerud, JH, Winslow, BJ. Conceptualizing vulnerable populations health-related research. Nurs Res 1998; 47: 69–78.Google Scholar
3. Knowles, RL, Ridout, D, Crowe, S, et al. Ethnic and socioeconomic variation in incidence of congenital heart defects. Arch Dis Child 2017; 102: 496–502.Google Scholar
4. Kucik, JE, Cassell, CH, Alverson, CJ, et al. Role of health insurance on the survival of infants with congenital heart defects. Am J Public Health 2014; 104: e62–e70.Google Scholar
5. Kucik, JE, Nembhard, WN, Donohue, P, et al. Community socioeconomic disadvantage and the survival of infants with congenital heart defects. Am J Public Health 2014; 104: e150–e157.Google Scholar
6. Wang, Y, Liu, G, Druschel, CM, Kirby, RS. Maternal race/ethnicity and survival experience of children with congenital heart disease. J Pediatr 2013; 163: 1437–1442; e1431–1432.Google Scholar
7. Lisanti, AJ, Allen, LR, Kelly, L, Medoff-Cooper, B. Maternal stress and anxiety in the pediatric cardiac intensive care unit. Am J Criti Care 2017; 26: 118–125.CrossRefGoogle ScholarPubMed
8. Rychik, J, Donaghue, DD, Levy, S, et al. Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr. 2013; 162: 302–307 e301.Google Scholar
9. Vrijmoet-Wiersma, CM, Ottenkamp, J, van Roozendaal, M, Grootenhuis, MA, Koopman, HM. A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease. Cardiol Young 2009; 19: 608–614.CrossRefGoogle ScholarPubMed
10. Golfenshtein, N, Hanlon, AL, Deatrick, JA, Medoff-Cooper, B. Parenting stress in parents of infants with congenital heart disease and parents of healthy infants: the first year of life. Compr Child Adolesc Nurs 2017; 40: 294–314.Google Scholar
11. Landolt, MA, Ystrom, E, Stene-Larsen, K, Holmstrom, H, Vollrath, ME. Exploring causal pathways of child behavior and maternal mental health in families with a child with congenital heart disease: a longitudinal study. Psychol Med 2014; 44: 3421–3433.Google Scholar
12. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16: 92–104.Google Scholar
13. Wernovsky, G, Licht, DJ. Neurodevelopmental outcomes in children with congenital heart disease–what can we impact? Pediatr Crit Care Med 2016; 17 (8 Suppl 1): S232–S242.Google Scholar
14. Raphael, JL, Zhang, Y, Liu, H, Giardino, AP. Parenting stress in US families: implications for paediatric healthcare utilization. Child Care Health Dev 2010; 36: 216–224.Google Scholar
15. Ernst, MM, Marino, BS, Cassedy, A, et al. Biopsychosocial predictors of quality of life outcomes in pediatric congenital heart disease. Pediatr Cardiol 2018; 39: 79–88.Google Scholar
16. Franck, L, Mcquillen, A, Wray, J, Grocott, MP, Goldman, A. Parent stress levels during children’s hospital recovery after congenital heart surgery. Pediatr Cardiol 2010; 31: 961–968.Google Scholar
17. Dudek-Shriber, L. Parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics. Am J Occup Ther 2004; 58: 509–520.Google Scholar
18. Lawoko, S, Soares, JJF. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung 2006; 35: 301–314.Google Scholar
19. Doherty, N, McCusker, CG, Molloy, B, et al. Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. J Reprod Infant Psychol 2009; 27: 390–400.Google Scholar
20. Woolf-King, SE, Anger, A, Arnold, EA, Weiss, SJ, Teitel, D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6: e004862.Google Scholar
21. Lazarus, RS, Folkman, S. Stress, Appraisal and Coping. Springer, New York, 1984.Google Scholar
22. Kolaitis, GA, Meentken, MG, Utens, E. Mental health problems in parents of children with congenital heart disease. Front Pediatr 2017; 5: 102.Google Scholar
23. Jackson, AC, Frydenberg, E, Liang, RP, Higgins, RO, Murphy, BM. Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol 2015; 36: 695–712.Google Scholar
24. Hearps, SJ, Mc Carthy, MC, Muscara, F, et al. Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease. Cardiol Young 2014; 23: 632–638.Google Scholar
25. Conger, RD, Conger, KJ, Martin, MJ. Socioeconomic status, family processes, and individual development. J Marriage Fam 2010; 72: 685–704.Google Scholar
26. Scrimin, S, Haynes, M, Alto, G, Bornstein, MH, Axia, G. Anxiety and stress in mothers and fathers in the 24 h after their child’s surgery. Child Care Health Dev 2009; 35: 227–233.Google Scholar
27. Norberg, AL, Lindblad, F, Boman, KK. Parental traumatic stress during and after paediatric cancer treatment. Acta Oncologica 2005; 44: 382–388.CrossRefGoogle ScholarPubMed
28. Guilfoyle, SM, Denson, LA, Baldassano, RN, Hommel, KA. Paediatric parenting stress in inflammatory bowel disease: application of the pediatric inventory for parents. Child Care Health Dev 2012; 38: 273–279.Google Scholar
29. Anderson, LS. Predictors of parenting stress in a diverse sample of parents of early adolescents in high-risk communities. Nurs Res 2008; 57: 340–350.Google Scholar
30. McConnell, D, Breitkreuz, R, Savage, A. From financial hardship to child difficulties: main and moderating effects of perceived social support. Child Care Health Dev 2011; 37: 679–691.Google Scholar
31. Sturms, LM, van der Sluis, CK, Stewart, RE, Groothoff, JW, ten Duis, HJ, Eisma, WH. A prospective study on paediatric traffic injuries: health-related quality of life and post-traumatic stress. Clin Rehabil 2005; 19: 312–322.Google Scholar
32. Shields-Poe, D, Pinelli, J. Variables associated with parental stress in neonatal intensive care units. Neonatal Netw 1997; 16: 29–37.Google Scholar
33. Davis, CC, Brown, RT, Bakeman, R, Campbell, R. Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 1998; 23: 219–228.Google Scholar
34. Dunkel Schetter, C, Schafer, P, Lanzi, RG, et al. Shedding light on the mechanisms underlying health disparities through community participatory methods: the stress pathway. Perspect Psychol Sci 2013; 8: 613–633.Google Scholar
35. Yildiz, A, Celebioglu, A, Olgun, H. Distress levels in Turkish parents of children with congenital heart disease. Australian J Adv Nurs 2009; 26: 39–46.Google Scholar
36. Bonis, S. Stress and parents of children with autism: a review of literature. Issues Ment Health Nurs 2016; 37: 153–163.Google Scholar
37. Lisanti, AJ, Golfenshtein, N, Medoff-Cooper, B. The pediatric cardiac intensive care unit parental stress model: refinement using directed content analysis. ANS Adv Nurs Sci 2017; 40: 319–336.Google Scholar
38. Spijkerboer, AW, Helbing, WA, Bogers, AJ, Van Domburg, RT, Verhulst, FC, Utens, EM. Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease. Cardiol Young 2007; 17: 638–645.Google Scholar
39. Lopez, R, Frangini, P, Ramirez, M, et al. Well-being and agency in parents of children with congenital heart disease: a survey in chile. World J Pediatr Congenit Heart Surg 2016; 7: 139–145.Google Scholar
40. Helfricht, S, Latal, B, Fischer, JE, Tomaske, M, Landolt, MA. Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study. Pediatr Crit Care Med 2008; 9: 217–223.Google Scholar
41. Ramchandani, P, Stein, A, Evans, J, O’Connor, TG, ALSPAC study team. Paternal depression in the postnatal period and child development: a prospective population study. Lancet 2005; 365: 2201–2205.Google Scholar
42. Ramchandani, PG, Stein, A, O’Connor, TG, Heron, J, Murray, L, Evans, J. Depression in men in the postnatal period and later child psychopathology: a population cohort study. J Am Acad Child Adolesc Psychiatry 2008; 47: 390–398.Google Scholar
43. Pinelli, J, Saigal, S, Bill Wu, Y-W, et al. Patterns of change in family functioning, resources, coping and parental depression in mothers and fathers of sick newborns over the first year of life. J Neonatal Nurs 2008; 14: 156–165.Google Scholar
44. Tak, YR, McCubbin, M. Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. J Adv Nurs 2002; 39: 190–198.Google Scholar
45. Hoehn, KS, Wernovsky, G, Rychik, J, et al. Parental decision-making in congenital heart disease. Cardiol Young 2004; 14: 309–314.Google Scholar
46. Shaw, RJ, Deblois, T, Ikuta, L, Ginzburg, K, Fleisher, B, Koopman, C. Acute stress disorder among parents of infants in the neonatal intensive care nursery. Psychosomatics 2006; 47: 206–212.Google Scholar
47. Wray, J, Sensky, T. Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young 2004; 14: 131–139.CrossRefGoogle ScholarPubMed
48. Haegen, MV, Luminet, O. Stress, psychosocial mediators, and cognitive mediators in parents of child cancer patients and cancer survivors: attention and working memory pathway perspectives. J Psychosoc Oncol 2015; 33: 504–550.Google Scholar
49. Pinto, NM, Weng, C, Sheng, X, et al. Modifiers of stress related to timing of diagnosis in parents of children with complex congenital heart disease. J Matern Fetal Neonatal Med 2016; 29: 3340–3346.Google Scholar
50. Utens, EM, Versluis-Den Bieman, HJ, Verhulst, FC, Witsenburg, M, Bogers, AJ, Hess, J. Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiol Young 2000; 10: 239–244.Google Scholar
51. Franich-Ray, C, Bright, MA, Anderson, V, et al. Trauma reactions in mothers and fathers after their infant’s cardiac surgery. J Pediatr Psychol 2013; 38: 494–505.Google Scholar
52. Bevilacqua, F, Palatta, S, Mirante, N, et al. Birth of a child with congenital heart disease: emotional reactions of mothers and fathers according to time of diagnosis. J Matern Fetal Neonatal Med 2013; 26: 1249–1253.Google Scholar
53. Carpenter, T, Grecian, SM, Reynolds, RM. Sex differences in early-life programming of the hypothalamic-pituitary-adrenal axis in humans suggest increased vulnerability in females: a systematic review. J Dev Orig Health Dis 2017; 8: 244–255.Google Scholar
54. van der Voorn, B, Hollanders, JJ, Ket, JCF, Rotteveel, J, Finken, MJJ. Gender-specific differences in hypothalamus-pituitary-adrenal axis activity during childhood: a systematic review and meta-analysis. Biol Sex Differ 2017; 8: 3.Google Scholar
55. Sherman, GD, Rice, LK, Jin, ES, Jones, AC, Josephs, RA. Sex differences in cortisol’s regulation of affiliative behavior. Horm Behav 2017; 92: 20–28.Google Scholar
56. Rutherfurd-Markwick, K, Starck, C, Dulson, DK, Ali, A. Salivary diagnostic markers in males and females during rest and exercise. J Int Soc Sports Nutr 2017; 14: 27.Google Scholar
57. Gifford, RM, Reynolds, RM. Sex differences in early-life programming of the hypothalamic-pituitary-adrenal axis in humans. Early Hum Dev 2017; 114: 7–10.Google Scholar
58. Andiarena, A, Balluerka, N, Murcia, M, Ibarluzea, J, Glover, V, Vegas, O. Evening salivary cortisol and alpha-amylase at 14months and neurodevelopment at 4years: sex differences. Horm Behav 2017; 94: 135–144.Google Scholar
59. Golfenshtein, N, Srulovici, E, Medoff-Cooper, B. Investigating parenting stress across pediatric health conditions – a systematic review. Issues Compr Pediatr Nurs 2015; 39: 1–49.Google Scholar
60. Franck, LS, Wray, J, Gay, C, Dearmun, AK, Lee, K, Cooper, BA. Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: a prospective cohort study. Int J Nurs Stud 2015; 52: 10–21.CrossRefGoogle ScholarPubMed
61. Goldberg, AE, Smith, JZ. Predictors of parenting stress in lesbian, gay, and heterosexual adoptive parents during early parenthood. J Fam Psychol 2014; 28: 125–137.Google Scholar
62. Menahem, S, Poulakis, Z, Prior, M. Children subjected to cardiac surgery for congenital heart disease. Part 2 – parental emotional experiences. Interact Cardiovasc Thorac Surg 2008; 7: 605–608.Google Scholar
63. Visconti, KJ, Saudino, KJ, Rappaport, LA, Newburger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 2002; 23: 314–321.Google Scholar
64. Torowicz, D, Irving, S, Sumpter, D, Medoff-Cooper, B. Infant temperament and parental stress in 3 month old infant following surgery for complex congenital heart disease. J Dev Behav Pediatr 2010; 31: 1–7.Google Scholar
65. Jordan, B, Franich-Ray, C, Albert, N, et al. Early mother-infant relationships after cardiac surgery in infancy. Arch Dis Child 2014; 99: 641–645.Google Scholar
66. Majnemer, A, Limperopoulos, C, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. Health and well-being of children with congenital cardiac malformations, and their families, following open-heart surgery. Cardiol Young 2006; 16: 157–164.CrossRefGoogle ScholarPubMed
67. Uzark, K, Jones, K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163–168.Google Scholar
68. Brosig, CL, Whitstone, BN, Frommelt, MA, Frisbee, SJ, Leuthner, SR. Psychological distress in parents of children with severe congenital heart disease: the impact of prenatal versus postnatal diagnosis. J Perinatol 2007; 27: 687–692.Google Scholar
69. Caris, EC, Dempster, N, Wernovsky, G, et al. Anxiety scores in caregivers of children with hypoplastic left heart syndrome. Congenit Heart Dis 2016; 11: 727–732.Google Scholar
70. Kosta, L, Harms, L, Franich-Ray, C, et al. Parental experiences of their infant’s hospitalization for cardiac surgery. Child Care Health Dev 2015; 41: 1057–1065.Google Scholar
71. Schabert, J, Browne, JL, Mosely, K, Speight, J. Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic. Patient 2013; 6: 1–10.Google Scholar
72. Clair, M, Daniel, C, Lamont, M. Destigmatization and health: cultural constructions and the long-term reduction of stigma. Soc Sci Med 2016; 165: 223–232.Google Scholar
73. Puhl, RM, Heuer, CA. The stigma of obesity: a review and update. Obesity (Silver Spring) 2009; 17: 941–964.Google Scholar
74. Hatzenbuehler, ML, Phelan, JC, Link, BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health 2013; 103: 813–821.Google Scholar
75. Schomerus, G, Schwahn, C, Holzinger, A, et al. Evolution of public attitudes about mental illness: a systematic review and meta-analysis. Acta Psychiatr Scand 2012; 125: 440–452.Google Scholar
76. Whitley, R, McKenzie, K. Social capital and psychiatry: review of the literature. Harv Rev Psychiatry 2005; 13: 71–84.Google Scholar
77. Murayama, H, Fujiwara, Y, Kawachi, I. Social capital and health: a review of prospective multilevel studies. J Epidemiol 2012; 22: 179–187.Google Scholar
78. Thuy, NT, Berry, HL. Social capital and mental health among mothers in Vietnam who have children with disabilities. Glob Health Action 2013; 6: 18886.CrossRefGoogle ScholarPubMed
79. Mussatto, K. Adaptation of the child and family to life with a chronic illness. Cardiol Young 2006; 16 (Suppl 3): 110.Google Scholar
80. Thompson, RJ. Coping with the stress of chronic childhood illness. In O’Quinn AN, ed. Management of Chronic Disorders of Childhood. Hall, Boston, 1985: 11–41.Google Scholar
81. McCubbin, HI, Patterson, J. The family stress process: the double ABCX model of adjustment and adaptation. Marriage Fam Rev 1983; 6: 7–37.Google Scholar
82. McEwen, BS. Stress, adaptation, and disease. Allostasis and allostatic load. Ann N Y Acad Sci 1998; 840: 33–44.Google Scholar
83. Juster, RP, McEwen, BS, Lupien, SJ. Allostatic load biomarkers of chronic stress and impact on health and cognition. Neurosci Biobehav Rev 2010; 35: 2–16.Google Scholar
84. McEwen, BS. Protective and damaging effects of stress mediators. N Engl J Med 1998; 338: 171–179.Google Scholar
85. Ramey, S, Schafer, P, DeClerque, J, et al. The preconception stress and resiliency pathways model: a multi-level framework on maternal, paternal, and child health disparities derived by community-based participatory research. Matern Child Health J 2015; 19: 707–719.Google Scholar
86. Dunkel Schetter, C, Dolbier, C. Resilience in the context of chronic stress and health in adults. Soc Personal Psychol Compass 2011; 5: 634–652.Google Scholar
87. Kim, DR, Bale, TL, Epperson, CN. Prenatal programming of mental illness: current understanding of relationship and mechanisms. Curr Psychiatry Rep 2015; 17: 5.Google Scholar
88. Gee, GC, Payne-Sturges, DC. Environmental health disparities: a framework integrating psychosocial and environmental concepts. Environ Health Perspect 2004; 112: 1645–1653.Google Scholar
89. 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.Google Scholar
90. Werner, H, Latal, B, Valsangiacomo Buechel, E, Beck, I, Landolt, MA. The impact of an infant’s severe congenital heart disease on the family: a prospective cohort study. Congenit Heart Dis 2014; 9: 203–210.Google Scholar
91. Koehler, A, Fagnano, M, Montes, G, Halterman, J. Elevated burden for caregivers of children with persistent asthma and a developmental disability. Matern Child Health J 2014; 18: 2080–2088.Google Scholar
92. Solberg, O, Dale, MT, Holmstrom, H, Eskedal, LT, Landolt, MA, Vollrath, ME. Emotional reactivity in infants with congenital heart defects and maternal symptoms of postnatal depression. Arch Womens Ment Health 2011; 14: 487–492.Google Scholar
93. Solberg, O, Gronning Dale, MT, Holmstrom, H, Eskedal, LT, Landolt, MA, Vollrath, ME. Trajectories of maternal mental health: a prospective study of mothers of infants with congenital heart defects from pregnancy to 36 months postpartum. J Pediatr Psychol 2012; 37: 687–696.Google Scholar
94. Lawoko, S, Soares, JJF. Social support among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Scand J Occup Ther 2003; 10: 177–187.Google Scholar
95. Turan, T, Basbakkal, Z, Ozbek, S. Effect of nursing interventions on stressors of parents of premature infants in neonatal intensive care unit. J Clin Nurs 2008; 17: 2856–2866.Google Scholar
96. Vander Haegen, M, Luminet, O. Stress, psychosocial mediators, and cognitive mediators in parents of child cancer patients and cancer survivors: attention and working memory pathway perspectives. J Psychosoc Oncol 2015; 33: 504–550.Google Scholar
97. Re, J, Dean, S, Menahem, S. Infant cardiac surgery: mothers tell their story: a therapeutic experience. World J Pediatr Congenit Heart Surg 2013; 4: 278–285.Google Scholar
98. Lawoko, S, Soares, JJF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res 2002; 52: 193–208.Google Scholar
99. Ahn, JA, Lee, S, Choi, JY. Comparison of coping strategy and disease knowledge in dyads of parents and their adolescent with congenital heart disease. J Cardiovascular Nurs 2014; 29: 508–516.Google Scholar
100. Lee, S, Yoo, JS, Yoo, IY. Parenting stress in mothers of children with congenital heart disease. Asian Nurs Res 2007; 1: 116–124.Google Scholar
101. Anderson, LS, Riesch, SK, Pridham, KA, Lutz, KF, Becker, PT. Furthering the understanding of parent-child relationships: a nursing scholarship review series. Part 4: parent-child relationships at risk. J Spec Pediatr Nurs 2010; 15: 111–134.Google Scholar
102. Stremler, R, Haddad, S, Pullenayegum, E, Parshuram, C. Psychological outcomes in parents of critically ill hospitalized children. J Pediatr Nurs 2017; 34: 36–43.Google Scholar
103. Bruce, E, Lilja, C, Sundin, K. Mothers’ lived experiences of support when living with young children with congenital heart defects. J Spec Pediatr Nurs 2014; 19: 54–67.Google Scholar
104. Harper, FWK, Peterson, AM, Uphold, H, et al. Longitudinal study of parent caregiving self-efficacy and parent stress reactions with pediatric cancer treatment procedures. Psychooncology 2013; 22: 1658–1664.Google Scholar
105. Streisand, R, Mackey, E, Herge, W. Associations of parent coping, stress, and well-being in mothers of children with diabetes: examination of data from a national sample. Matern Child Health J 2010; 14: 612–617.Google Scholar
106. Aftyka, A, Rozalska-Walaszek, I, Rosa, W, Rybojad, B, Karakula-Juchnowicz, H. Post-traumatic growth in parents after infants’ neonatal intensive care unit hospitalisation. J Clin Nurs 2017; 26: 727–734.Google Scholar
107. Dawson, G, Ashman, SB, Carver, LJ. The role of early experience in shaping behavioral and brain development and its implications for social policy. Dev Psychopathol 2000; 12: 695–712.Google Scholar
108. McCusker, CG, Doherty, NN, Molloy, B, et al. Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Arch Dis Child 2007; 92: 137–141.Google Scholar
109. Hynan, MT, Steinberg, Z, Baker, L, et al. Recommendations for mental health professionals in the NICU. J Perinatol 2015; 35 (Suppl 1): S14–S18.Google Scholar
110. Simeone, S, Pucciarelli, G, Perrone, M, et al. Comparative analysis: implementation of a pre-operative educational intervention to decrease anxiety among parents of children with congenital heart disease. J Pediatr Nurs 2017; 35: 144–148.Google Scholar
111. McCusker, CG, Doherty, NN, Molloy, B, et al. A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child Care Health Dev 2010; 36: 110–117.Google Scholar
112. Golfenshtein, N, Deatrick, JA, Lisanti, AJ, Medoff-Cooper, B. Coping with the stress in the cardiac intensive care unit: can mindfulness be the answer? J Pediatr Nurs 2017; 37: 117–126.Google Scholar
113. Lion, KC, Raphael, JL. Partnering health disparities research with quality improvement science in pediatrics. Pediatrics 2015; 135: 354–361.Google Scholar
114. Ylmaz, HB, Kavlak, O, Isler, A, Liman, T, Van Sell, SL. A study of maternal attachment among mothers of infants with congenital anomalies in Turkey. Infants Young Child 2011; 24: 259–266.Google Scholar
115. Sikora, K, Janusz, B. Maternal bond with cardiosurgically treated infant. Qualitative analysis of mothers’ narratives. Dev Period Med 2014; 18: 439–446.Google Scholar
116. Boztepe, H, Ay, A, Kerimoglu Yildiz, G, Cinar, S. Does the visibility of a congenital anomaly affect maternal-infant attachment levels? J Specialists Pediatr Nurs 2016; 21: 200–211.Google Scholar
117. Goldberg, S, Simmons, RJ, Newman, J, Campbell, K, Fowler, RS. Congenital heart disease, parental stress, and infant-mother relationships. J Pediatr 1991; 119: 661–666.Google Scholar
118. Fuchs, A, Mohler, E, Reck, C, Resch, F, Kaess, M. The early mother-to-child bond and its unique prospective contribution to child behavior evaluated by mothers and teachers. Psychopathology 2016; 49: 211–216.Google Scholar
119. Treyvaud, K, Anderson, VA, Howard, K, et al. Parenting behavior is associated with the early neurobehavioral development of very preterm children. Pediatrics 2009; 123: 555–561.Google Scholar
120. Berant, E, Mikulincer, M, Shaver, PR. Mothers’ attachment style, their mental health, and their children’s emotional vulnerabilities: a 7-year study of children with congenital heart disease. J Pers 2008; 76: 31–65.CrossRefGoogle ScholarPubMed
121. Enlow, E, Faherty, LJ, Wallace-Keeshen, S. Perspectives of low socioeconomic status mothers of premature infants. Pediatrics 2017; 139: 1–8.Google Scholar
122. Taylor, JY, Washington, OG, Artinian, NT, Lichtenberg, P. Parental stress among African American parents and grandparents. Issues Ment Health Nurs 2007; 28: 373–387.Google Scholar
123. Shah, R, Sobotka, SA, Yi-Fan, C, Msall, ME. Positive parenting practices, health disparities, and developmental progress. Pediatrics 2015; 136: 318–326.Google Scholar
124. Jacobs, R, Boyd, L, Brennan, K, Sinha, CK, Giuliani, S. The importance of social media for patients and families affected by congenital anomalies: a Facebook cross-sectional analysis and user survey. J Pediatr Surg 2016; 51: 1766–1771.Google Scholar
125. Agrawal, H, Wright, OK, Carberry, KE, Sexson Tejtel, SK, Mery, CM, Molossi, S. Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: results of a survey. Congenit Heart Dis 2017; 12: 721–725.Google Scholar
126. Davis, MA, Anthony, DL, Pauls, SD. Seeking and receiving social support on Facebook for surgery. Soc Sci Med 2015; 131: 40–47.Google Scholar