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Parent Mental Health

The association between parent stress, coping and mental health, and neurodevelopmental outcomes of infants with congenital heart disease

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Pages 948-972 | Received 03 Jul 2020, Accepted 23 Feb 2021, Published online: 11 Mar 2021

References

  • Albers, C. A., & Grieve, A. J. (2007). Test Review: Bayley, N. (2006). Bayley Scales of Infant and Toddler Development– Third Edition. San Antonio, TX: Harcourt Assessment. Journal of Psychoeducational Assessment, 25(2), 180–190. https://doi.org/10.1177/0734282906297199
  • Alder, J., Fink, N., Bitzer, J., Hösli, I., & Holzgreve, W. (2007). Depression and anxiety during pregnancy: A risk factor for obstetric, fetal and neonatal outcome? A critical review of the literature. The Journal of Maternal-Fetal & Neonatal Medicine: The Official Journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians, 20(3), 189–209. https://doi.org/10.1080/14767050701209560
  • Antony, M. M., Bieling, P. J., Cox, B. J., Enns, M. W., & Swinson, R. P. (1998). Psychometric properties of the 42-item and the 21-item version of the DASS in clinical groups and a community sample. Psychological Assessment, 10(2), 176–181. https://doi.org/10.1037/1040-3590.10.2.176
  • Barreto, T. S. M., Sakamoto, V. T. M., Magagnin, J. S., Coelho, D. F., Waterkemper, R., & Canabarro, S. T. (2016). Experience of parents of children with congenital heart disease: Feelings and obstacles. Revista da Rede de Enfermagem Do Nordeste, 17(1), 128. https://doi.org/10.15253/2175-6783.2016000100017
  • Bayley, N. (2006). Bayley scales of infant and toddler development: Administration manual. San Antonio, TX: Harcourt assessment.
  • Bellinger, D. C., & Newburger, J. W. (2010). Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Progress in Pediatric Cardiology, 29(2), 87–92. https://doi.org/10.1016/j.ppedcard.2010.06.007
  • Bellinger, D. C., Wypij, D., Rivkin, M. J., DeMaso, D. R., Robertson, R., Dunbar-Masterson, C., Rappaport, L., Wernovsky, G., Jonas, R., & Newburger, J. W. (2011). Adolescents with D-transposition of the great arteries corrected with the arterial switch procedure: Neuropsychological assessment and structural brain imaging. Circulation, 124(12), 1361–1369. https://doi.org/10.1161/CIRCULATIONAHA.111.026963
  • Birca, A., Vakorin, V. A., Porayette, P., Madathil, S., Chau, V., Seed, M., Doesburg, S. M., Blaser, S., Nita, D. A., Sharma, R., Duerden, E. G., Hickey, E. J., Miller, S. P., & Hahn, C. D. (2016). Interplay of brain structure and function in neonatal congenital heart disease. Annals of Clinical and Translational Neurology, 3(9), 708–722. https://doi.org/10.1002/acn3.336
  • Bratt, E. L., Järvholm, S., Ekman-Joelsson, B. M., Johannsmeyer, A., Carlsson, S. Å., Mattsson, L. Å., & Mellander, M. (2019). Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease. Cardiology in the Young, 29(11), 1328–1334. https://doi.org/10.1017/S1047951119001781
  • Brosig, C. L., Bear, L., Allen, S., Hoffmann, R. G., Pan, A., Frommelt, M., & Mussatto, K. A. (2017). Preschool Neurodevelopmental Outcomes in Children with Congenital Heart Disease. The Journal of Pediatrics, 183, 80–86.e1. https://doi.org/10.1016/j.jpeds.2016.12.044
  • Brosig, C. L., Bear, L., Allen, S., Simpson, P., Zhang, L., Frommelt, M., & Mussatto, K. A. (2018). Neurodevelopmental outcomes at 2 and 4 years in children with congenital heart disease. Congenital Heart Disease, 13(5), 700–705. https://doi.org/10.1111/chd.12632
  • Brosig, C. L., Bear, L., Allen, S., Hoffmann, R. G., Pan, A., Frommelt, M., & Mussatto, K. A. (2017). Preschool neurodevelopmental outcomes in children with congenital heart disease. The Journal of Pediatrics, 183, 80–86. https://doi.org/10.1016/j.jpeds.2016.12.044
  • Brosig, C., Butcher, J., Butler, S., Ilardi, D. L., Sananes, R., Sanz, J. H., Sood, E., Struemph, K., & Ware, J. (2014). Monitoring developmental risk and promoting success for children with congenital heart disease: Recommendations for cardiac neurodevelopmental follow-up programs. Clinical Practice in Pediatric Psychology, 2(2), 153–165. https://doi.org/10.1037/cpp0000058
  • Brosig, C., & Sood, E. (2017). Promoting mental health for parents of children with heart conditions. Pediatric congenital heart association.
  • Calderon, J., & Bellinger, D. C. (2015). Executive function deficits in congenital heart disease: Why is intervention important? Cardiology in the Young, 25(7), 1238–1246. https://doi.org/10.1017/S1047951115001134
  • Canadian Congenital Heart Alliance (2017). CHD facts and issues. https://www.cchaforlife.org/facts-issues.
  • Claessens, N. H. P., Algra, S. O., Ouwehand, T. L., Jansen, N. J. G., Schappin, R., Haas, F., Eijsermans, M. J. C., de Vries, L. S., Benders, M. J. N. L., Moeskops, P., Išgum, I., van Haastert, I. C., Groenendaal, F., & Breur, J. M. P. J, CHD Lifespan Study Group Utrecht (2018). Perioperative neonatal brain injury is associated with worse school-age neurodevelopment in children with critical congenital heart disease. Developmental Medicine & Child Neurology, 60(10), 1052–1058. https://doi.org/10.1111/dmcn.13747
  • Claessens, N. H. P., Kelly, C. J., Counsell, S. J., & Benders, M. J. N. L. (2017). Neuroimaging, cardiovascular physiology, and functional outcomes in infants with congenital heart disease. Developmental Medicine and Child Neurology, 59(9), 894–902. https://doi.org/10.1111/dmcn.13461
  • Compas, B. E., Bemis, H., Gerhardt, C. A., Dunn, M. J., Rodriguez, E. M., Desjardins, L., Preacher, K. J., Manring, S., & Vannatta, K. (2015). Mothers and fathers coping with their children's cancer: Individual and interpersonal processes. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 34(8), 783–793. https://doi.org/10.1037/hea0000202
  • Compas, B. E., Boyer, M. C., Stanger, C., Colletti, R. B., Thomsen, A. H., Dufton, L. M., & Cole, D. A. (2006). Latent variable analysis of coping, anxiety/depression, and somatic symptoms in adolescents with chronic pain. Journal of Consulting and Clinical Psychology, 74(6), 1132–1142. https://doi.org/10.1037/0022-006X.74.6.1132
  • Compas, B. E., Champion, J. E., Forehand, R., Cole, D. A., Reeslund, K. L., Fear, J., Hardcastle, E. J., Keller, G., Rakow, A., Garai, E., Merchant, M. J., & Roberts, L. (2010). Coping and parenting: mediators of 12-month outcomes of a family group cognitive-behavioral preventive intervention with families of depressed parents. Journal of Consulting and Clinical Psychology, 78(5), 623–634. https://doi.org/10.1037/a0020459
  • Compas, B. E., J., Conner & Osowiecki, D. (1997). Effortful and involuntary responses to stress. In Coping with chronic stress (pp. 105–130). Springer.
  • Compas, B. E., Connor-Smith, J. K., Saltzman, H., Thomsen, A. H., & Wadsworth, M. E. (2001). Coping with stress during childhood and adolescence: problems, progress, and potential in theory and research. Psychological Bulletin, 127(1), 87–127. https://doi.org/10.1037/0033-2909.127.1.87
  • Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8, 455–480. https://doi.org/10.1146/annurev-clinpsy-032511-143108
  • Connor-Smith, J. K., Compas, B. E., Wadsworth, M. E., Thomsen, a H., & Saltzman, H. (2000). Responses to stress in adolescence: Measurement of coping and involuntary stress responses. Journal of Consulting and Clinical Psychology, 68(6), 976–992. https://doi.org/10.1037/0022-006X.68.6.976
  • Davis, C. C., Brown, R. T., Bakeman, R., & Campbell, R. (1998). Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. Journal of Pediatric Psychology, 23(4), 219–228. https://doi.org/10.1093/jpepsy/23.4.219
  • Demaso, D. R., Labella, M., Taylor, G. A., Forbes, P. W., Stopp, C., Bellinger, D. C., Rivkin, M. J., Wypij, D., & Newburger, J. W. (2014). Psychiatric disorders and function in adolescents with D-transposition of the great arteries. The Journal of Pediatrics, 165(4), 760–766. https://doi.org/10.1016/j.jpeds.2014.06.029
  • Dimitropoulos, A., McQuillen, P. S., Sethi, V., Moosa, A., Chau, V., Xu, D., Brant, R., Azakie, A., Campbell, A., Barkovich, A. J., Poskitt, K. J., & Miller, S. P. (2013). Brain injury and development in newborns with critical congenital heart disease. Neurology, 81(3), 241–248. https://doi.org/10.1212/WNL.0b013e31829bfdcf
  • Doherty, N., & McCusker, C. (2016). The congenital heart disease intervention program (CHIP) and Interventions in infancy. In Congenital heart disease and neurodevelopment (pp. 133–148). Academic Press Inc.
  • Donofrio, M. T., & Massaro, A. N. (2010). The impact of congenital heart disease on brain development and neurodevelopmental outcome. International Journal of Pediatrics, 2010, 1–74. https://doi.org/10.1155/2010/359390
  • Forsythe, C. J., & Compas, B. E. (1987). Interaction of cognitive appraisals of stressful events and coping: Testing the goodness of fit hypothesis. Cognitive Therapy and Research, 11(4), 473–485. https://doi.org/10.1007/BF01175357
  • Franck, L. S., McQuillan, A., Wray, J., Grocott, M. P. W., & Goldman, A. (2010). Parent stress levels during children's hospital recovery after congenital heart surgery. Pediatric Cardiology, 31(7), 961–968. https://doi.org/10.1007/s00246-010-9726-5
  • Franich-Ray, C., Bright, M. A., Anderson, V., Northam, E., Cochrane, A., Menahem, S., & Jordan, B. (2013). Trauma reactions in mothers and fathers after their infant's cardiac surgery. Journal of Pediatric Psychology, 38(5), 494–505. https://doi.org/10.1093/jpepsy/jst015
  • Gerstle, M., Beebe, D. W., Drotar, D., Cassedy, A., & Marino, B. S. (2016). Executive functioning and school performance among pediatric survivors of complex congenital heart disease. The Journal of Pediatrics, 173, 154–159. https://doi.org/10.1016/j.jpeds.2016.01.028
  • Gramszlo, C., Karpyn, A., Demianczyk, A. C., Shillingford, A., Riegel, E., Kazak, A. E., & Sood, E. (2020). Parent perspectives on family-based psychosocial interventions for congenital heart disease. The Journal of Pediatrics, 216, 51–57.e2. https://doi.org/10.1016/j.jpeds.2019.09.059
  • Gregory, M. R. P., Prouhet, P. M., Russell, C. L. & Pfannenstiel, B. R., (2018). Quality of life for parents of children with congenital heart defect: A systematic review. The Journal of Cardiovascular Nursing, 33(4), 363–371. https://doi.org/10.1097/JCN.0000000000000466
  • Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)-A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010
  • Jackson, J. L., Gerardo, G. M., Daniels, C. J., & Vannatta, K. (2017). Perceptions of disease-related stress: A key to better understanding patient-reported outcomes among survivors of congenital heart disease. The Journal of Cardiovascular Nursing, 32(6), 587–593. https://doi.org/10.1097/JCN.0000000000000371
  • Jaser, S. S., Linsky, R., & Grey, M. (2014). Coping and psychological distress in mothers of adolescents with type 1 diabetes. Maternal and Child Health Journal, 18(1), 101–108. https://doi.org/10.1007/s10995-013-1239-4
  • Kazak, A. E., & Barakat, L. P. (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of Pediatric Psychology, 22(5), 749–758. https://doi.org/10.1093/jpepsy/22.5.749
  • Kazazian, V., Colapinto, K., Marini, D., Saini, A., Arsenau, P., Sananes, R., Ly, L., Chau, V., Seed, M., & Miller, S. P. (2019). Rapid uptake of a cardiac neurodevelopment program in Canada. In 8th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative. Presentation at the Caridac Neurodevelopmental Outcome Collaborative Conference (CNOC).
  • Kingston, D., Tough, S., & Whitfield, H. (2012). Prenatal and postpartum maternal psychological distress and infant development: A systematic review. Child Psychiatry and Human Development, 43(5), 683–714. https://doi.org/10.1007/s10578-012-0291-4
  • Kolaitis, G. A., Meentken, M. G., & Utens, E. M. W. J. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics, 5(May), 1–7. https://doi.org/10.3389/fped.2017.00102
  • Lawoko, S., & Soares, J. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 12(6), 655–666. https://doi.org/10.1023/A:1025114331419
  • Long, S. H., Galea, M. P., Eldridge, B. J., & Harris, S. R. (2012). Performance of 2-year-old children after early surgery for congenital heart disease on the Bayley scales of infant and toddler development, third edition. Early Human Development, 88(8), 603–607. https://doi.org/10.1016/j.earlhumdev.2012.01.007
  • Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: Comparison of the depression anxiety stress scales (DASS) with the beck depression and anxiety inventories. Behaviour Research and Therapy, 33(3), 335–343. https://doi.org/10.1016/0005-7967(94)00075-U
  • Majnemer, A., Limperopoulos, C., Shevell, M., Rosenblatt, B., Rohlicek, C., & Tchervenkov, C. (2006). Long-term neuromotor outcome at school entry of infants with congenital heart defects requiring open-heart surgery. The Journal of Pediatrics, 148(1), 72–77. https://doi.org/10.1016/j.jpeds.2005.08.036
  • Marino, B. S., Lipkin, P. H., Newburger, J. W., Peacock, G., Gerdes, M., Gaynor, J. W., Mussatto, K. A., Uzark, K., Goldberg, C. S., Johnson, W. H., Li, J., Smith, S. E., Bellinger, D. C., & Mahle, W. T, American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council (2012). Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management: A scientific statement from the American Heart Association. Circulation, 126(9), 1143–1172. https://doi.org/10.1161/CIR.0b013e318265ee8a
  • Masten, A. S., & Coatsworth, J. D. (1998). The development of competence in favorable and unfavorable environments: Lessons from research on successful children. American Psychologist, 53(2), 205–220. https://doi.org/10.1037/0003-066X.53.2.205
  • McCusker, C., & Casey, F. (2016). Congenital heart disease and neurodevelopment: Understanding and Improving Outcomes. Academic Press Inc.
  • McCusker, C. G., Doherty, N. N., Molloy, B., Casey, F., Rooney, N., Mulholland, C., Sands, A., Craig, B., & Stewart, M. (2007). Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Archives of Disease in Childhood, 92(2), 137–141. https://doi.org/10.1136/adc.2005.092320
  • McCusker, C. G., Doherty, N. N., Molloy, B., Rooney, N., Mulholland, C., Sands, A., Craig, B., Stewart, M., & Casey, F. (2010). A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child: Care, Health and Development, 36(1), 110–1117. https://doi.org/10.1111/j.1365-2214.2009.01026.x
  • McDonald, K. P., Connolly, J., Roberts, S. D., Ford, M. K., Westmacott, R., Dlamini, N., Tam, E. W. Y., & Williams, T. (2020). A tool to guide early intervention: The adapted response to stress questionnaire for parents following neonatal brain injury. Journal of Pediatric Psychology, 45(9), 1005–1034. https://doi.org/10.1093/jpepsy/jsaa059
  • Miller, S. P., McQuillen, P., Hamrick, S. E. G., Xu, D., Glidden, D., Charlton, N., Karl, T., Azakie, A., Ferriero, D., Barkovich, J., & Vigneron, D. (2007). Abnormal brain development in newborns with congenital heart disease. New England Journal of Medicine, 357(19), 1928–1938. https://doi.org/10.1056/NEJMoa067393
  • Moon, J. R. J., Song, J., Huh, I. S., Kang, S. W., Park, S. A., Chang, J. H., Yang, T., & Gook, J. (2017). The relationship between parental rearing behavior, resilience, and depressive symptoms in adolescents with congenital heart disease. Frontiers in Cardiovascular Medicine, 4(September), 1–8. https://doi.org/10.3389/fcvm.2017.00055
  • Mussatto, K. A., Hoffmann, R. G., Hoffman, G. M., Tweddell, J. S., Bear, L., Cao, Y., & Brosig, C. (2014). Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics, 133(3), e570–e577. https://doi.org/10.1542/peds.2013-2309
  • O'Brien, S. M., Clarke, D. R., Jacobs, J. P., Jacobs, M. L., Lacour-Gayet, F. G., Pizarro, C., Welke, K. F., Maruszewski, B., Tobota, Z., Miller, W. J., Hamilton, L., Peterson, E. D., Mavroudis, C., & Edwards, F. H. (2009). An empirically based tool for analyzing mortality associated with congenital heart surgery. The Journal of Thoracic and Cardiovascular Surgery, 138(5), 1139–1153. https://doi.org/10.1016/j.jtcvs.2009.03.071
  • Panigrahy, A., Schmithorst, V. J., Wisnowski, J. L., Watson, C. G., Bellinger, D. C., Newburger, J. W., & Rivkin, M. J. (2015). Relationship of white matter network topology and cognitive outcome in adolescents with D-transposition of the great arteries. NeuroImage: Clinical, 7, 438–448. https://doi.org/10.1016/j.nicl.2015.01.013
  • Peyvandi, S., De Santiago, V., Chakkarapani, E., Chau, V., Campbell, A., Poskitt, K. J., Xu, D., Barkovich, A. J., Miller, S., & McQuillen, P. (2016). Association of prenatal diagnosis of critical congenital heart disease with postnatal brain development and the risk of brain injury. JAMA Pediatrics, 170(4), e154450. https://doi.org/10.1001/jamapediatrics.2015.4450
  • Poehlmann-Tynan, J., Gerstein, E. D., Burnson, C., Weymouth, L., Bolt, D. M., Maleck, S., & Schwichtenberg, A. J. (2015). Risk and resilience in preterm children at Age 6. Development and Psychopathology, 27 (3), 843–858. https://doi.org/10.1017/S095457941400087X
  • Polito, A., Barrett, C. S., Rycus, P. T., Favia, I., Cogo, P. E., & Thiagarajan, R. R. (2015). Neurologic injury in neonates with congenital heart disease during extracorporeal membrane oxygenation: An analysis of extracorporeal life support organization registry data. ASAIO Journal, 61(1), 43–48. https://doi.org/10.1097/MAT.0000000000000151
  • Rafferty, K. A., & Beck, G. A. (2019). You are not alone’: Advice giving for parents of children living with complex chronic conditions. Health Communication, 35(11), 1386–1310. https://doi.org/10.1080/10410236.2019.1636341
  • Ran Tak, Y., & McCubbin, M. (2002). Family stress, perceived social support and coping following the diagnosis of a child's congenital heart disease. Journal of Advanced Nursing, 39(2), 190–198. https://doi.org/10.1046/j.1365-2648.2002.02259.x
  • Rempel, G. R., Ravindran, V., Rogers, L. G., & Magill-Evans, J. (2013). Parenting under pressure: A grounded theory of parenting young children with life-threatening congenital heart disease. Journal of Advanced Nursing, 69(3), 619–630. https://doi.org/10.1111/j.1365-2648.2012.06044.x
  • Roberts, G., Howard, K., Spittle, A. J., Brown, N. C., Anderson, P. J., & Doyle, L. W. (2008). Rates of early intervention services in very preterm children with developmental disabilities at age 2 years. Journal of Paediatrics and Child Health, 44(5), 276–280. https://doi.org/10.1111/j.1440-1754.2007.01251.x
  • Rodriguez, E. M., Dunn, M. J., Zuckerman, T., Vannatta, K., Gerhardt, C. A., & Compas, B. E. (2012). Cancer-related sources of stress for children with cancer and their parents. Journal of Pediatric Psychology, 37(2), 185–197. https://doi.org/10.1093/jpepsy/jsr054
  • Rutter, M. (1979). Protective factors in children’s responses to stress and disadvantage. Annals of the Academy of Medicine, 8(3), 324.
  • Schaefer, C., von Rhein, M., Knirsch, W., Huber, R., Natalucci, G., Caflisch, J., Landolt, M. A., & Latal, B. (2013). Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease. Developmental Medicine & Child Neurology, 55(12), 1143–1149. https://doi.org/10.1111/dmcn.12242
  • Shillingford, A. J., Glanzman, M. M., Ittenbach, R. F., Clancy, R. R., Gaynor, J. W., & Wernovsky, G. (2008). Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics, 121(4), e759–e767. https://doi.org/10.1542/peds.2007-1066
  • Siciliano, R. E., Prussien, K. V., Lee, C., Patel, N., Murphy, L., Compas, B. E., & Jordan, L. (2019). Cognitive function in pediatric hypoplastic left heart syndrome: Systematic review and meta-analysis. Journal of Pediatric Psychology, 44(8), 937–947. https://doi.org/10.1093/jpepsy/jsz021
  • Simon, K., Barakat, L. P., Patterson, C. A., & Dampier, C. (2009). Symptoms of depression and anxiety in adolescents with sickle cell disease: The role of intrapersonal characteristics and stress processing variables. Child Psychiatry and Human Development, 40(2), 317–330. https://doi.org/10.1007/s10578-009-0129-x
  • Soto, C. B., Olude, O., Hoffmann, R. G., Bear, L., Chin, A., Dasgupta, M., & Mussatto, K. (2011). Implementation of a routine developmental follow-up program for children with. Congenital Heart Disease, 6(5), 451–460. https://doi.org/10.1111/j.1747-0803.2011.00546.x
  • Statistics Canada (2013). Canadian Community Health Survey: Annual component.
  • Sun, L., Macgowan, C. K., Sled, J. G., Yoo, S.-J., Manlhiot, C., Porayette, P., Grosse-Wortmann, L., Jaeggi, E., McCrindle, B. W., Kingdom, J., Hickey, E., Miller, S., & Seed, M. (2015). Reduced fetal cerebral oxygen consumption is associated with smaller brain size in fetuses with congenital heart disease. Circulation, 131(15), 1313–1323. https://doi.org/10.1161/CIRCULATIONAHA.114.013051
  • Szigethy, E., Kenney, E., Carpenter, J., Hardy, D. M., Fairclough, D., Bousvaros, A., Keljo, D., Weisz, J., Beardslee, W. R., Noll, R., & Demaso, D. R. (2007). Cognitive-behavioral therapy for adolescents with inflammatory bowel disease and subsyndromal depression. Journal of the American Academy of Child and Adolescent Psychiatry, 46(10), 1290–1298. https://doi.org/10.1097/chi.0b013e3180f6341f
  • Treyvaud, K., Doyle, L. W., Lee, K. J., Ure, A., Inder, T. E., Hunt, R. W., & Anderson, P. J. (2016). Parenting behavior at 2 years predicts school-age performance at 7 years in very preterm children. Journal of Child Psychology and Psychiatry, 57(7), 814–821. https://doi.org/10.1111/jcpp.12489
  • Van Der Linde, D., Konings, E. E. M., Slager, M. A., Witsenburg, M., Helbing, W. A., Takkenberg, J. J. M., & Roos-Hesselink, J. W. (2011). Birth prevalence of congenital heart disease worldwide: A systematic review and meta-analysis. Journal of the American College of Cardiology, 58(21), 2241–2247. https://doi.org/10.1016/j.jacc.2011.08.025
  • Vanderbilt University Medical Centre (2016). “STAT Scores and Categories Explained.”
  • von Rhein, M., Buchmann, A., Hagmann, C., Dave, H., Bernet, V., Scheer, I., Knirsch, W., Latal, B., Bernet, V., Bürki, C., Dave, H., Prêtre, R., Hagmann, C., Knirsch, W., Kretschmar, O., Kellenberger, C., Scheer, I., Latal, B., Liamlahi, R., … Sennhauser, F. H. (2015). Severe congenital heart defects are associated with global reduction of neonatal brain volumes. The Journal of Pediatrics, 167(6), 1259–1263. https://doi.org/10.1016/j.jpeds.2015.07.006
  • Watson, K., Dunbar, J., Thigpen, J., Reising, M., Hudson, K., McKee, L., Forehand, R., & Compas, B. (2014). Observed parental responsiveness/warmth and child’s coping: Cross-sectional and prospective relations in a family depression preventive intervention. Journal of Family Psychology, 23(1), 1–7.
  • Wernovsky, G. (2006). Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiology in the Young, 16(S1), 92–104. https://doi.org/10.1017/S1047951105002398
  • Williams, T. S., McDonald, K. P., Roberts, S. D., Chau, V., Seed, M., Miller, S. P., & Sananes, R. (2019). From diagnoses to ongoing journey: Parent experiences following congenital heart disease diagnoses. Journal of Pediatric Psychology, 44(8), 924–936. https://doi.org/10.1093/jpepsy/jsz055
  • Williams, T. S., McDonald, K. P., Roberts, S. D., Westmacott, R., Ahola Kohut, S., Dlamini, N., & Miller, S. P. (2018). In their own words: developing the parent experiences questionnaire following neonatal brain injury using participatory design. Brain Injury, 32(11), 1386–1396. https://doi.org/10.1080/02699052.2018.1495844
  • Woolf-King, S. E., Anger, A., Arnold, E. A., Weiss, S. J., & Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2), 1–14. https://doi.org/10.1161/JAHA.116.004862
  • Woolf-King, S. E., Arnold, E., Weiss, S., & Teitel, D. (2018). "There's no acknowledgement of what this does to people": A qualitative exploration of mental health among parents of children with critical congenital heart defects. Journal of Clinical Nursing, 27(13-14), 2785–2794. https://doi.org/10.1111/jocn.14275
  • Wray, J., Brown, K., Tregay, J., Crowe, S., Knowles, R., Bull, K., & Gibson, F. (2018). Parents’ experiences of caring for their child at the time of discharge after cardiac surgery and during the postdischarge period: Qualitative study using an online forum. Journal of Medical Internet Research, 20(5), e155. https://doi.org/10.2196/jmir.9104

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