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Adaptation of the child and family to life with a chronic illness

Published online by Cambridge University Press:  13 October 2006

Kathleen Mussatto
Kathleen Mussatto
Affiliation:
Herma Heart Center, Children's Hospital of Wisconsin, Milwaukee, Wisconsin, United States of America
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Abstract

Chronic illness in a child produces stress for both the child with the illness and the family of which he or she is a part.1 Today, it is estimated that greater than one-tenth of children are living with some form of chronic illness or condition.2–3 Faced with this stress, children and families are required to adapt to potential physical, emotional, social, and financial challenges. Professionals providing health care have an opportunity to influence how children and families interpret and adapt to these challenges. Guidance can be drawn from the multiple theoretical perspectives that have explored the process of adaptation to chronic illness.

Keywords

Family impactquality of lifestress and coping
Type
Long-term Outcomes
Information
Cardiology in the Young , Volume 16 , Supplement S3: Controversies and Challenges of the Atrioventricular Junctions and Other Challenges Facing Paediatric Cardiovascular Practitioners and their Patients , September 2006 , pp. 110 - 116
Copyright
© 2006 Cambridge University Press

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References

Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 1998; 39: 29–46.Google Scholar
Perrin JM. Introduction. In: Hobbs N & Perrin JM (eds). Issues in the care of children with chronic disease. Jossey-Bass, San Francisco, 1985, pp 1–10.
Cadman D, Boyle M, Szatmari P, Offord DR. Chronic illness, disability, and mental and social well-being: Findings of the Ontario Child Health Study. Pediatrics 1987; 79: 805–813.Google Scholar
American Heart Association. Congenital cardiovascular disease: statistics. 2006. Retrieved April 12, 2006, from http://www. americanheart.org/presenter.jhtml?identifier=4576.
March of Dimes. Congenital heart defects: quick references and fact sheets. 2006. Retrieved April 12, 2006 from http://search. marchofdimes.com/cgi-bin/MsmGo.exe?grab_id=17&page_ id=1639680&query=Birth+Defects&hiword=BIRTHED+BIRTHING+BIRTHS+Birth+DEFEC+DEFECT+Defects+
Cohn JK. An empirical study of parents' reaction to the diagnosis of congenital heart disease in infants. Soc Work Health Care 1996; 23: 67–79.Google Scholar
Lawoko S, Soares JF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other disease, and parents of healthy children. J Psychosom Res 2002; 52: 193–208.Google Scholar
McCubbin HI, Thompson AI, McCubbin MA. Resiliency in families: A conceptual model of family adjustment and adaptation in response to stress and crisis. In: McCubbin HI, Thompson AI, McCubbin MA (eds). Family Assessment: Resiliency, Coping and Adaptation – Inventories for Research and Practice, 1st Edn. University of Wisconsin Publishers, Madison, Wisconsin, 1996, pp 1–64.
Sullivan-Bolyai S, Sadler L, Knafl KA, Gilliss CL. Great expectations: a position description for parents as caregivers: Part I. Pediatr Nurs 2003; 29: 457–461.Google Scholar
Austin JK. Family adaptation to a child's chronic illness. Annu Rev Nurs Res 1991; 9: 103–120.Google Scholar
Heidrich SM, Ryff CD. The self in later years of life: Changing perspectives on psychological well-being. In: Sperry, Prosen (eds). Aging in the Twenty-first Century: A Developmental Perspective. Garland Pub, New York, 1996, pp 73–100.
Frank RG, Thayer JF, Hagglund KJ, et al. Trajectories of adaptation in pediatric chronic illness: the importance of the individual. J Consult Clin Psychol 1998; 66: 521–532.Google Scholar
Kazak AE. The social context of coping with childhood chronic illness: family systems and social support. In: LaGreca AM, Siegel LJ, Wallander JL, Walker CE (eds). Stress and coping in child health. The Guilford Press. New York, NY, 1992, pp 262–278.
Melito R. Adaptation in family systems: a developmental perspective. Family Process, 1985; 24: 89–100.Google Scholar
Mott SR, James SR, Spherac AM. Chronic illness in children and families. In: Mott SR, James SR, Spherac AM (eds). Nursing Care of Children and Families, 2nd Edn. Lippincott Publishing, Inc, Philadelphia, 1990, pp 613–639.
Patterson JM. Understanding family resilience. J Clin Psychol 2001; 58: 233–246.Google Scholar
Duvall EM. Family development's first forty years. Fam Relations, 1988; 37: 127–134.Google Scholar
Wallander JL, Varni JW, Babani L, Banis HT, DeHaan CB, Wilcox KT. Disability parameters: chronic strain and adaptation of physically handicapped children and their mothers. J Pediatr Psychol 1989; 14: 23–42.Google Scholar
Lazarus RS, Folkman S. Stress, appraisal, and coping. Springer, New York, 1984.
Leske JS. Family stresses, strengths, and outcomes after critical injury. Critical Care Nursing Clinics of North America 2000; 12: 237–244.Google Scholar
Leske JS. Comparison of family stresses, strengths, and outcomes after trauma and surgery. AACN Clinical Issues 2003; 14: 33–41.Google Scholar
Casey FA, Sykes DH, Craig BG, Mulholland HC. Behavioral adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 1996; 21: 335–352.Google Scholar
Goldberg S, Morris P, Simmons RJ, Fowler RS, Levison H. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol 1990; 15: 347–358.Google Scholar
Morelius E, Lundh U, Nelson N. Parental stress in relation to the severity of congenital heart disease in the offspring. Pediatr Nurs 2002; 28: 28–33.Google Scholar
Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Healthcare 2003; 17: 163–168.Google Scholar
Svavarsdottir EK, McCubbin MA. Parenthood transition for parents of an infant diagnosed with a congenital heart condition. J Pediatr Nurs 1996; 11: 207–216.Google Scholar
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
Utens EM, Versluis-Den Bieman HJ, Witsenburg M, Bogers AJ, Hess J, Verhulst FC. Does age at the time of elective cardiac surgery or catheter intervention in children influence the longitudinal development of psychological distress and styles of coping of parents? Cardiol Young 2002; 12: 524–530.Google Scholar
Brosig C, Mussatto KA, Kuhn E, Tweddell JS. Neurodevelopmental outcome in preschool survivors of complex congenital heart disease: implications for clinical practice. J Pediatr Health Care, In Press.
Wernovsky G, Shillingford AJ, Gaynor JW. Central nervous system outcomes in children with complex congenital heart disease. Curr Opin Cardiol 2005; 20: 94–99.Google Scholar
Kirshbom PM, Flynn TB, Clancy RR, et al. Late neurodevelopmental outcome after repair of total anomalous pulmonary venous connection. J Thorac Cardiovasc Surg 2005; 129: 1091–1097.Google Scholar
Williams DL, Gelijns AC, Moskowitz AJ, et al. Hypoplastic left heart syndrome: valuing the survival. J Thorac Cardiovasc Surg 2000; 119: 720–731.Google Scholar
Wray J, Maynard L. Living with congenital or acquired cardiac disease in childhood: maternal perceptions of the impact on the child and family. Cardiol Young 2005; 15: 133–140.Google Scholar
Utens EM, Verhulst FC, Meijboom FJ, et al. Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med 1993; 23: 415–424.Google Scholar
Wray J, Sensky T. How does the intervention of cardiac surgery affect the self-perception of children with congenital heart disease? Child Care Health Dev 1998; 24: 57–72.Google Scholar
Connolly D, McClowry S, Hayman L, Mahony L, Artman M. Posttraumatic stress disorder in children after cardiac surgery. J Pediatr 2004; 144: 480–484.Google Scholar
Uzark K, Jones K, Burwinkle TM, Varni JW. The pediatric quality of life inventory™ in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.Google Scholar
Moons P, Van Deyk K, De Geest S, Gewillig M, Budts W. Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 2005; 91: 1193–1198.Google Scholar
Mussatto K, Tweddell J. Quality of life following surgery for congenital cardiac malformations in neonates and infants. Cardiol Young 2005; 15 (Suppl 1): I174–I178.Google Scholar
Salzer-Muhar U, Herle M, Floquet P, et al. Self-concept in male and female adolescents with congenital heart disease. Clin Pediatr 2002; 41: 17–24.Google Scholar
Utens EM, Bieman HJ, Verhulst FC, Meijboom FJ, Erdman RA, Hess J. Psychopathology in young adults with congenital heart disease. Follow-up results. Eur Heart J 1998; 19: 647–651.Google Scholar
Van Horn M, DeMaso DR, Gonzalez-Heydrich J, Erickson JD. Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Adolesc Psychiatry 2001; 40: 847–854.Google Scholar
DeMaso DR, Campis LK, Wypij D, Bertram S, Lipshitz M, Freed M. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol 1991; 16: 137–149.Google Scholar