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Psychosocial functioning of parents of children with heart disease—describing the landscape

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Abstract

The aim was to describe the psychological functioning of parents of school-age children with heart disease (HD) in a large-scale, transnational evaluation of parent dyads across the spectrum of cardiac diagnoses and a range of psychosocial domains. Parents of children with HD attending routine out-patient cardiology follow-up visits completed questionnaires assessing their mental health, coping, and family functioning. Parents (1197 mothers and 1053 fathers) of 1214 children (mean age: 12.6 years; S.D. 3.0 years; median time since last surgery: 8.9 years) with congenital or acquired HD from three centers each in the UK and the USA participated (80% response rate). Parents of children with milder HD demonstrated few differences from healthy norms and had significantly lower scores on measures of illness-related stress and post-traumatic stress than parents of children with single ventricle conditions or cardiomyopathy. Parents in these latter two diagnostic sub-groups had significantly higher levels of anxiety and depression than healthy norms but did not differ on other measures of family functioning and coping skills. There were few differences between parents from the UK and the USA. Agreement between mothers and fathers within a dyad was highest for the measure of frequency of illness-related stressors (ICC = 0.67) and lowest for anxiety (ICC = 0.12).

Conclusion: Our results suggest two different pathways for the long-term psychological well-being of parents of children with HD: on the one hand, more complex HD is associated with poorer long-term psychosocial outcomes; in contrast, there are also grounds for optimism, particularly for parents of children with less complex conditions, with better psychological outcomes noted for some groups of parents compared to previously reported early psychosocial outcomes. Future work needs to identify factors other than disease severity which might explain poorer (or better) functioning in some parents of children with more complex HD.

What is Known:

• Parents of children with congenital heart disease report elevated levels of anxiety, depression, and stress after cardiac surgery in infancy.

• Maternal mental health problems can have an adverse impact on the psychological adjustment of the child with congenital heart disease.

What is New:

• Parents of children with milder forms of heart disease do not differ from healthy norms in the longer term and psychological outcomes are better than might be expected from early findings.

• More complex diagnoses, particularly functional single ventricle conditions and cardiomyopathy, are associated with poorer long-term psychosocial outcomes for parents.

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Abbreviations

AHD:

Acquired heart disease

BV:

Biventricular/two ventricle

CHD:

Congenital heart disease

CHIP:

Coping Health Inventory for Parents

FES:

Family Environment Scale

HADS:

Hospital Anxiety and Depression Scale

HD:

Heart disease

ICD:

Implantable cardiac defibrillator

PCQLI:

Pediatric Cardiac Quality of Life Inventory

PIP:

Pediatric Inventory for Parents

PTDS:

Posttraumatic Diagnostic Scale

QoL:

Quality of life

SRRS:

Social Readjustment Rating Scale

STAI:

Spielberger State-Trait Anxiety Inventory

SV:

Functionally single ventricle

UK:

United Kingdom

US:

United States

References

  1. Brosig CL, Mussatto KA, Kuhn EM, Tweddell JS (2007) Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol 28(4):255–262. https://doi.org/10.1007/s00246-006-0013-4

    Article  CAS  PubMed  Google Scholar 

  2. Cohen M, Mansoor D, Gagin R, Lorber A (2008) Perceived parenting style, self-esteem and psychological distress in adolescents with heart disease. Psychol Health Med 13(4):381–388

    Article  Google Scholar 

  3. Compas BE, Bemis H, Gerhardt CA, Dunn MJ, Rodriguez EM, Desjardins L, Preacher KJ, Manring S, Vannatta K (2015) Mothers and fathers coping with their children’s cancer: individual and interpersonal processes. Health Psychol 34(8):783–793

    Article  Google Scholar 

  4. Davis CC, Brown RT, Bakeman R, Campbell R (1998) Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 23(4):219–228

    Article  CAS  Google Scholar 

  5. DeMaso DR, Lauretti A, Spieth L, Van Der Feen JR, Jay KS, Gauvreau K, Walsh EP, Berul CI (2004) Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 93(5):582–587

    Article  Google Scholar 

  6. Doherty N, McCusker C, Molloy B, Mulholland C, Rooney N, Craig B, Sands A, Stewart M, Casey F (2009) Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. J Reprod Infant Psychol 27(4):390–400

    Article  Google Scholar 

  7. Farnsworth MM, Fosyth D, Haglund C, Ackerman MJ (2006) When I go in to wake them… I wonder: parental perceptions about congenital long QT syndrome. J Am Assoc Nurse Pract 18(6):284–290

    Article  Google Scholar 

  8. Foa EB, Cashman L, Jaycox L, Perry K (1997) The validation of a self-report measure of posttraumatic stress disorder: the Posttraumatic Diagnostic Scale. Psychol Assess 9(4):445–451

    Article  Google Scholar 

  9. Gunlicks ML, Weissman MM (2008) Change in child psychopathology with improvement in parental depression: a systematic review. J Am Acad Child Adolesc Psychiatry 47(4):379–389

    Article  Google Scholar 

  10. Hearps SJ, McCarthy MC, Muscara F, Hearps SJ, Burke K, Jones B, Anderson VA (2014) Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease. Cardiol Young 24(4):632–639. https://doi.org/10.1017/S1047951113000760

    Article  PubMed  Google Scholar 

  11. Hendriks KS, Grosfeld F, Van Tintelen J, Van Langen I, Wilde A, Van Den Bout J, Ten Kroode H (2005) Can parents adjust to the idea that their child is at risk for a sudden death?: psychological impact of risk for long QT syndrome. Am J Med Genet A 138(2):107–112

    Article  Google Scholar 

  12. Holmes TH, Rahe RH (1967) The social readjustment rating scale. J Psychosom Res 11(2):213–218

    Article  CAS  Google Scholar 

  13. Human Resources for Science and Technology (2015) The European Region

  14. Jackson AC, Frydenberg E, Liang RP, Higgins RO, Murphy BM (2015) Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol 36(4):695–712. https://doi.org/10.1007/s00246-015-1121-9

    Article  PubMed  Google Scholar 

  15. Kotchick BA, Forehand R, Armistead L, Klein K, Wierson M (1996) Coping with illness: interrelationships across family members and predictors of psychological adjustment. J Fam Psychol 10(3):358–370

    Article  Google Scholar 

  16. Landolt MA, Buechel ERV, Latal B (2008) Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 152(3):349–355

    Article  Google Scholar 

  17. Lawoko S, Soares JJ (2002) 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 52(4):193–208

    Article  Google Scholar 

  18. Lawoko S, Soares JJ (2006) Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart & lung : the journal of critical care 35(5):301–314. https://doi.org/10.1016/j.hrtlng.2006.01.004

    Article  Google Scholar 

  19. Leeman J, Crandell JL, Lee A, Bai J, Sandelowski M, Knafl K (2016) Family functioning and the well-being of children with chronic conditions: a meta-analysis. Research in nursing & health 39(4):229–243

    Article  Google Scholar 

  20. Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Newburger JW, Mahony L, Mussatto K, Tong E, Cohen M, Andersen C, Shera D, Khoury PR, Wray J, Gaynor JW, Helfaer MA, Kazak AE, Shea JA, Pediatric Cardiac Quality of Life Inventory Testing Study C (2010) Validation of the pediatric cardiac quality of life inventory. Pediatrics 126(3):498–508. https://doi.org/10.1542/peds.2009-2973

    Article  PubMed  PubMed Central  Google Scholar 

  21. McCubbin HI, McCubbin MA, Patterson JM, Cauble AE, Wilson LR, Warwick W (1983) CHIP. Coping health inventory for parents: an assessment of parental coping patterns in the care of the chronically ill child. J Marriage Fam 45:359–370

    Article  Google Scholar 

  22. McCusker CG, Doherty NN, 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. Arch Dis Child 92(2):137–141. https://doi.org/10.1136/adc.2005.092320

    Article  CAS  PubMed  Google Scholar 

  23. Moos RH, Moos BS (1994) Family environment scale manual. Consulting Psychologists Press

  24. Spielberger CD, Gorsuch RL, Lushene RE (1970) Manual for the state-trait anxiety inventory

  25. Spijkerboer AW, Helbing WA, Bogers AJ, Van Domburg RT, Verhulst FC, Utens EM (2007) Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease. Cardiol Young 17(6):638–645

    Article  Google Scholar 

  26. Streisand R, Braniecki S, Tercyak KP, Kazak AE (2001) Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol 26(3):155–162

    Article  CAS  Google Scholar 

  27. Tak YR, McCubbin M (2002) Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. J Adv Nurs 39(2):190–198

    Article  Google Scholar 

  28. Thompson Jr RJ, Gustafson KE (1996) Adaptation to chronic childhood illness. American Psychological Association

  29. Torowicz D, Irving SY, Hanlon AL, Sumpter DF, Medoff-Cooper B (2010) Infant temperament and parental stress in 3-month-old infants after surgery for complex congenital heart disease. J Dev Behav Pediatr 31(3):202–208. https://doi.org/10.1097/DBP.0b013e3181d3deaa

    Article  PubMed  PubMed Central  Google Scholar 

  30. van der Linde D, Konings EE, Slager MA, Witsenburg M, Helbing WA, Takkenberg JJ, Roos-Hesselink JW (2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 58(21):2241–2247. https://doi.org/10.1016/j.jacc.2011.08.025

    Article  PubMed  Google Scholar 

  31. Visconti KJ, Saudino KJ, Rappaport LA, Newburger JW, Bellinger DC (2002) Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. Journal of Developmental & Behavioral Pediatrics 23(5):314–321

    Article  Google Scholar 

  32. Vrijmoet-Wiersma CM, Ottenkamp J, van Roozendaal M, Grootenhuis MA, Koopman HM (2009) A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease. Cardiol Young 19(6):608–614. https://doi.org/10.1017/S1047951109991831

    Article  PubMed  Google Scholar 

  33. Wallander JL, Varni JW (1998) Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry Allied Discip 39(1):29–46

    Article  CAS  Google Scholar 

  34. Wei H, Roscigno CI, Hanson CC, Swanson KM (2015) Families of children with congenital heart disease: a literature review. Heart & lung : the journal of critical care 44(6):494–511. https://doi.org/10.1016/j.hrtlng.2015.08.005

    Article  Google Scholar 

  35. Woolf-King SE, Anger A, Arnold EA, Weiss SJ, Teitel D (2017) Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 6(2):e004862

    Article  Google Scholar 

  36. Wray J, Franklin R, Brown K, Cassedy A, Marino BS (2013) Testing the pediatric cardiac quality of life inventory in the United Kingdom. Acta Paediatr 102(2):e68–e73. https://doi.org/10.1111/apa.12074

    Article  PubMed  Google Scholar 

  37. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370

    Article  CAS  Google Scholar 

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Acknowledgements

We would like to thank the clinical staff and research assistants at Cincinnati Children’s Hospital Medical Center, The Children’s Hospital of Philadelphia, Lucile Packard Children’s Hospital Stanford, Royal Brompton and Harefield NHS Foundation Trust, Great Ormond Street Hospital NHS Foundation Trust, and Birmingham Children’s Hospital who participated in the enrolment of patients, data collection, and coordination for this study.

Funding

This research was funded by the following: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) K23 Grant (5-K23-HD048637-05), American Heart Association Grant (0465467), Children’s Hospital of Philadelphia Institutional Development Fund, Cincinnati Children’s Hospital and Medical Center (CCHMC) Research Foundation (31-554000-355514), and Ann & Robert H. Lurie Children’s Hospital of Chicago.

Author information

Authors and Affiliations

  1. Critical Care and Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, WC1N 3JH, UK

    Jo Wray & Katherine Brown

  2. Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Amy Cassedy

  3. Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Michelle M. Ernst

  4. Department of Pediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, UK

    Rodney C. Franklin

  5. Department of Pediatrics, Divisions of Pediatric Cardiology and Critical Care Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Bradley S. Marino

Authors
  1. Jo Wray
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Contributions

Jo Wray conceptualized and designed the study, interpreted the findings, drafted the initial manuscript, revised the manuscript, and approved the final manuscript as submitted.

Amy Cassedy carried out all statistical analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Michelle Ernst participated in the analysis and interpretation of the findings, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Rodney Franklin participated in the design of the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Katherine Brown participated in the design of the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Bradley Marino conceptualized and designed the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Jo Wray.

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Conflict of interest

Bradley S. Marino, MD, MPP, MSCE is the creator of the Pediatric Cardiac Quality of Life Inventory. The authors do not have any other conflicts of interest relevant to this article to disclose.

Ethical approval

Appropriate ethical and institutional review board approval was received at all sites.

Informed consent

Parents provided written (UK) or verbal (US) consent for their participation.

Additional information

Communicated by Peter de Winter

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Wray, J., Cassedy, A., Ernst, M.M. et al. Psychosocial functioning of parents of children with heart disease—describing the landscape. Eur J Pediatr 177, 1811–1821 (2018). https://doi.org/10.1007/s00431-018-3250-7

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  • DOI: https://doi.org/10.1007/s00431-018-3250-7

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