Backround. Paediatric specialists have advocated for exercise training programs for children with congenital heart disease without addressing other common deficits, such as behavioural and psychological problems. Despite evidence of the role of occupational therapy in rehabilitation for adults with cardiac disease, there has been little published about occupational therapy for children with congenital heart disease. Purpose. This literature review on the outcomes of congenital heart disease, guided by the Canadian Model of Occupational Performance, highlights the comprehensive needs of these children. Results. The findings of the review are that congenital heart disease can have wide-ranging neurological and psychosocial implications. This suggests that occupational therapists should be concerned about limitations in the participation of these children in age-appropriate childhood occupations related to self-care, productivity or leisure. Practice Implications. As cardiac rehabilitation program planning becomes more commonplace for children, comprehensive programs that promote optimal occupational performance need to be developed, implemented and evaluated.
BaumC., & LawM. (1996). Occupational therapy practice: Focusing on occupational performance. American Journal of Occupational Therapy, 51, 277–287.
2.
BelmontJ. W. (1998). Recent progress in the molecular genetics of congenital heart defects. Clinical Genetics, 54 (1), 11–19.
3.
CalzolariA., TurchettaA., BiondiG., DragoF., De RanieriC., SantilliA., et al. (1990). Rehabilitation of children after total correction of tetralogy of Fallot. International Journal of Cardiology, 28, 151–158.
4.
Canadian Association of Occupational Therapists. (1997). Enabling occupation: An occupational therapy perspective. Ottawa, ON: CAOT Publications ACE.
5.
CarrJ. (1995). Down Syndrome: Children growing up. Cambridge, England: Cambridge University Press.
6.
CaseyF., CraigB., & MulhollandH. (1994). Quality of life in surgically palliated complex congenital heart disease. Archives of Disease in Childhood, 70, 382–386.
7.
CaseyF. A., SykesD. H., CraigB., PowerR., & MulhollandH. C. (1996). Behavioral adjustment of children with surgically palliated complex congenital heart disease. Journal of Pediatric Psychology, 21, 335–352.
8.
ClarksonP. M., MacArthurB. M., Barratt-BoyesB. G., WhitlockR. M., & NeutzeJ. M. (1980). Developmental progress after cardiac surgery in infancy using hypothermia and circulatory arrest. Circulation, 62, 855–861.
9.
DeMasoD., BeardsleyW., SilbertA., & FylerD. (1990). Psychological functioning in children with cyanotic heart defects. Developmental and Behavioral Pediatrics, 11, 289–294.
10.
du PlessisA. J., ChangA. C., WesselD., LockJ. E., WernovskyG., NewburgerJ., et al. (1995). Cerebrovascular accidents following the Fontan operation. Pediatric Neurology, 12, 230–235.
11.
EganM., & DeLaatD. (1994). Considering spirituality in occupational therapy practice. Canadian Journal of Occupational Therapy, 61, 95–101.
12.
FallonP., AparicioJ. M., ElliottM. J., & KirkhamF. J. (1995). Incidence of neurological complications of surgery for congenital heart disease. Archives of Disease in Childhood, 72, 418–422.
13.
FekkesM., KamphuisR. P., OttenkampJ., VerripsE., VogelsT., KamphuisM., et al. (2001). Health-related quality of life in young adults with minor congenital heart disease. Psychology and Health, 16, 239–250.
14.
FerenczC., & VillasenorA. C. (1991). Epidemiology of cardiovascular malformations: The state of the art. Cardiology in the Young, 1, 264–284.
15.
FerryP. C. (1987). Neurologic sequelae of cardiac surgery in children. American Journal of Diseases in Childhood, 141, 309–312.
16.
ForbessJ. M., ViscontiK. J., BellingerD. C., & JonasR.A. (2001). Neurodevelopmental outcomes in children after the Fontan operation. Circulation, 104 (12 Suppl. S), I127–I132.
17.
FredriksenP. M., KahrsN., BlaasvaerS., SigurdsenE., GundersenO., RoeksundO., NorgaandG., SoerbyeO., IngjerF., & ThaulowE. (2000). Effect of physical training in children and adolescents with congenital heart disease. Cardiology in the Young, 10, 107–114.
18.
GaliotoF. (1990). Cardiac rehabilitation for children. In GarsonJ. B. A., & McNamaraD. (Ed.), The science and practice of pediatric cardiology. (pp. Chap. 135). Philadelphia: Lea & Febiger.
19.
GaliotoF., & TomassoniT. (1992). Cardiac rehabilitation for children with congenital heart disease. Medicine, Exercise, Nutrition and Health, 1, 272–280.
20.
GlaserA. W., DaviesK., WalkerD., & BrazierD. (1997). Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumors in childhood. Quality of Life Research, 6, 43–53.
21.
GoldbergS., SimmonsR., NewmanJ., CampbellK., & FowlerR. (1991). Congenital heart disease, parental stress, and infant-mother relationships,. Journal of Pediatrics, 119, 661–666.
22.
HoffmanJ. I. E. (1990). Congenital heart disease: Incidence and inheritance. Pediatric Clinics of North America, 37, 25–43.
23.
HornbergerJ., & LenertL. (1996). Variation among quality of life surveys: Theory and practice. Medical Care, 34, DS23–33.
24.
JanusM., & GoldbergS. (1995). Sibling empathy and behavioural adjustment of children with congenital heart disease. Child: Care, Health and Development, 21, 321–331.
JonasR. A. (1998). Neurological protection during cardiopulmonary bypass/deep hypothermia. Pediatric Cardiology, 19, 321–330.
27.
JonasR. A., BellingerD. C., RappaportL. A., WernovskyG., HickeyP. R., FarrellD. M., et al. (1993). Relation of pH strategy and developmental outcome after hypothermic circulatory arrest. The Journal of Thoracic and Cardiovascular Surgery, 106, 362–368.
28.
KirkhamF. J. (1998). Recognition and prevention of neurological complications in pediatric cardiac surgery. Pediatric Cardiology, 19, 331–345.
29.
KitchenL. (1978). Psychological factors in congenital heart disease in children. Journal of Family Practice, 6, 777–783.
30.
LaaneK., MebergA., OtterstadJ., FrolandG., SorlandS., LindstromB., & ErikssonB. (1997). Quality of life in children with congenital heart defects. Acta Paediatrica, 86, 975–980.
31.
LawM., BaptisteS., CarswellA., McCollM. A., PolatajkoH., & PollockN. (1998). Canadian occupational performance measure. (3rd ed.). Ottawa, ON: CAOT Publications ACE.
32.
LimperopoulosC., MajnemerA., ShevellM. I., RosenblattB., RohlicekC., & TchervenkovC. (1999a). Neurologic status of newborns with congenital heart defects before open heart surgery. Pediatrics, 103, 402–408.
33.
LimperopoulosC., ManjnemerA., RosenblattB., ShevellM., RohlicekC., & TchervenkovC. (1999b). Multimodality evoked potential findings in infants with congenital heart defects. Journal of Child Neurology, 14, 702–707.
34.
LimperopoulosC., MajnemerA., ShevellM., RosenblattB., RohlicekC., & TchervenkovC. (2000). Neurodevelopmental status of newborns and infants with congenital heart defects before and after open heart surgery. Journal of Pediatrics, 137, 638–645.
35.
MahleW. T. (2001). Neurologic and cognitive outcomes in children with congential heart disease. Current Opinion in Pedatrics, 13, 482–486.
36.
MajnemerA., & LimperopoulosC. (1999). Developmental progress of children with congenital heart defects requiring open heart surgery. Seminars in Pediatric Neurology, 6, 12–19.
37.
MillerG., EggliK., ContantC., BaylenB., & MyersJ. (1995). Postoperative neurologic complications after open heart surgery on young infants. Archives of Pediatric and Adolescent Medicine, 149, 764–768.
38.
MravinacC. M. (1991). Neurologic dysfunctions following cardiac surgery. Critical Care Nursing Clinics of North America, 3, 691–698.
39.
NeveuxJ. (1996). Total repair of congenital heart disease in the very young. Israel Journal of Medical Science, 32, 886–887.
40.
O'DoughertyM., WrightF., LoewensonR., & TorresF. (1985). Cerebral dysfunction after chronic hypoxia in children. Neurology, 35, 42–46.
41.
O'DoughertyM., WrightF. S., GarmezyN., LoewensonR. B., & TorresF. (1983). Later competence and adaptation in infants who survive severe heart defects. Child Development, 54, 1129–1142.
42.
ParkS. C., & NechesW. H. (1993). The neurologic complications of congenital heart disease. Neurology Clinics, 11, 441–462.
43.
PolatajkoH. J., MandichA. D., MillerL. T., & MacnabJ. J. (2001). Cognitive orientation to daily occupational performance (CO-OP): Part II - The evidence. Physical and Occupational Therapy in Pediatrics, 20 (2/3), 83–106.
44.
RebeiroK. L. (2001). Client-centred practice: Body, mind and spirit resurrected. Canadian Journal of Occupational Therapy, 68, 65–69.
45.
RuntonN. (1988). Congenital cardiac anomalies: A reference guide for nurses. Cardiovascular Nursing, 2 (3), 56–65.
46.
RuttenbergH., AdamsT., OrsmondG., ConleeR., & FisherG. (1983). Effects of exercise training on aerobic fitness in children after open heart surgery. Cardiology, 4, 19–24.
47.
SchipperH., ClinchJ. J., & OlwenyC. L. M. (1996). Quality of life studies: Definitions and conceptual issues. In SpilkerB. (Ed.), Quality of life and pharmacoeconomics in clinical trials. (pp. 11–23). Philadelphia: Lippincott-Raven.
48.
SharmaR., ChoudharyS. K., MohanM. R., PadmaM. V., JainS., Bhardwaj, et al. (2000). Neurological evaluation and intelligence testing in the child with operated congenital heart disease. Annals of Thoracic Surgery, 70, 575–581.
49.
WicalB. Smith, & TomasiL. G. (1990). A distinctive neurologic syndrome after induced profound hypothermia. Pediatric Neurology, 6 (3), 202–205.
50.
SparacinoP. (1994). Adult congenital heart disease: An emerging population. Nursing Clinics of North America, 29, 231–219.
51.
SpurklandI., BjornstadP. G., LindbergH., & SeemE. (1993). Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect. Acta Paediatrica, 82, 71–76.
52.
TomassoniT. (1996). Role of exercise in the management of cardiovascular disease in children and youth. Medicine and Science in Sports and Exercise, 28, 406–413.
53.
ToothL., & McKennaK. (1996). Contemporary issues in cardiac rehabilitation: Implications for occupational therapists. British Journal of Occupational Therapy, 59, 133–139.
54.
UrbanowskiR., & VargoJ. (1994). Spirituality, daily practice, and the occupational performance model. Canadian Journal of Occupational Therapy, 61, 88–94.
55.
UtensE., VerhulstF., ErdmanR., MeijboomF., DuivenvoordenH., Bos, et al. (1993). Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychological Medicine, 23, 415–424.
56.
UtensE., VerhulstF., ErdmanR., MeijboomF., DuivenvoordenH., BosE., et al. (1994). Psychosocial functioning of young adults after surgical correction for congenital heart disease in childhood: A follow-up study. Journal of Psychosomatic Research, 38, 745–758.
57.
UtensE. M. W., BiemanH. J. Versluis-Den, WitsenburgM., BogersA. J. J. C., VerhulstF. C., & HessJ. (2001). Cognitive, and behavioural and emotional functioning of young children awaiting elective cardiac surgery or catheter intervention. Cardiology in the Young, 11, 153–160.
58.
WHO (2001). International classification of functioning, disability and health: Short version. Geneva: World Health Organisation.
59.
WilcockA. (1998). Ill Health: Occupational risk factors., An occupational perspective on health. (pp. 132–162). Thorofare, NJ: Slack.
60.
WildeC., & HallJ. (1995). Occupational therapy in cardiac rehabilitation: Resumption of daily life activities. Physical Medicine and Rehabilitation Clinics of North America, 6, 349–372.
61.
WilloughbyC., & PolatajkoH. J. (1994). Motor problems in children with developmental coordination disorder: Review of the literature. American Journal of Occupational Therapy, 49, 787–794.
62.
WrayJ., & SenskyT. (1998). How does the intervention of cardiac surgery affect the self-perception of children with congenital heart disease. Child: Care, Health and Development, 24, 57–72.
63.
WrayJ., & SenskyT. (2001). Congenital heart disease and cardiac surgery in childhood: Effects on cognitive function and academic ability. Heart, 85, 687–691.
64.
WrightM., JarvisS., WannamakerE., & CookD. (1985). Congenital heart disease: Functional abilities in young adults. Archives of Physical Medicine and Rehabilitation, 66, 289–293.
65.
WrightM., & NolanT. (1994). Impact of cyanotic heart disease on school performance. Archives of Disease in Childhood, 71, 64–70.
