Social support among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children

Scandinavian Journal of Occupational Therapy

Volumn 10, Issue 4, 2003, Pages 177-187

  Lawoko, S ^a,b   Soares, Joaquim J F ^a,b  

^a Samhällsmedicin   (Sweden)

^b KAROLINSKA INSTITUTE   (Sweden)

Author keywords

Congenital heart defects; Fathers; Mothers; Predictors; Social isolation

Indexed keywords

ADOLESCENT; ADULT; CHILD; CHILD CARE; CHILD PARENT RELATION; CHILDHOOD DISEASE; CONGENITAL HEART DISEASE; CONTROLLED STUDY; DISEASE SEVERITY; DISTRESS SYNDROME; EMOTIONAL ATTACHMENT; EMOTIONALITY; EMPLOYMENT; EXPERIENCE; FATHER; FEMALE; FINANCIAL MANAGEMENT; GENDER; HUMAN; INFORMATION PROCESSING; MAJOR CLINICAL STUDY; MALE; MOTHER; MULTIVARIATE ANALYSIS; PARENT; QUESTIONNAIRE; REVIEW; SOCIAL ASPECT; SOCIAL INTERACTION; SOCIAL SUPPORT; SOCIOLOGY; STATISTICAL SIGNIFICANCE;

EID: 0942277064     PISSN: 11038128     EISSN: None     Source Type: Journal    
DOI: 10.1080/11038120310016779     Document Type: Review

References (59)

1. Hall EO. From fun and excitement to joy and trouble: an explorative study of three Danish fathers' experiences around birth. Scand J Car Sci 1995; 9: 171-9.
2. Halldorsdotti S, Karlsdottir SI. Empowerment or discouragement: women's experience of caring and uncaring encounters during childbirth. Health Care Women Int 1996; 17: 361-79.
3. Fleming AS, Corter C. Factors influencing maternal responsiveness in humans: usefulness of an animal model. Psychoneuroendocrinology 1988; 13: 189-212.
4. LaRossa R, LaRossa MM. Transition to parenthood: how infants change families. Beverly Hills, CA: Sage, 1981.
5. Sunnegårdh, J. Barnkardiologi [in Swedish]. Lund, Student litteratur, 2000.
6. Pradat P. Epidemiology of major congenital heart defects in Sweden, 1981-1986. J Epidemiol Community Health 1992; 46: 211-5.
7. Grech V. Spectrum of congenital heart disease in Malta. Eur Heart J 1998; 19: 521-5.
8. Andersen S, Vik T, Linker DT. Congenital heart disease in Sortrondelag. Incidence, diagnosis, course and treatment. Tidskr Nor Laegeforen 1994; 114: 29-32.
9. Samanék M. Congenital heart malformations: Prevalence, severity, survival and quality of life. Cardiol Young 2000; 10: 179-85.
10. Perloff JK. Medical center experiences. 22nd Bethesda Conference: Congenital heart disease after childhood. An expanding patient population. J Am Coll Cardiol 1991; 18: 315.
11. 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.
12. 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: 219-28.
13. Gardner FV, Freeman NH, Black AM, Angelini GD, et al. Disturbed mother-infant interaction in association with congenital heart disease. Heart 1996; 76: 56-9.
14. 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: 347-58.
15. Goldberg S, Simmons RJ, Newman J, Campbell K, Fowler RS. Congenital heart disease: parental stress, and infant-mother relationships. J Pediatr 1991; 4: 661-6.
16. Jessop DJ, Riessman CK, Stain RE. Chronic childhood illness and maternal mental health. J Dev Behav Pediatr 1988; 9: 147-56.
17. Sparacino CS, Tong EM, Messias DK, Foote D, Chesla CA, Giliss GL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 1997; 26: 187-95.
18. Mrazek D, Klinnert M. Can stress affect genes in vulnerable children? W.T. Grant study of Asthma risk factors. CME Syllabus and proceedings summary. American psychiatric association 145th annual meeting. Washington, DC, May 1992: 267,
19. Schulz RM, Dye J, Jolicoeur L, Cafferty T, Watson J. Quality of life factors for parents of children with asthma. J Asthma 1994; 31: 209-19.
20. Browne G, Bramston P. Stress and the quality of life in the parents of young people with intellectual disabilities. J Psychiatr Ment Health Nurs 1998; 5: 415-21.
21. 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.
22. Lawoko S, Soares JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual life Res 2003; 12: 655-66.
23. House JS. Work stress and social support. Reading, MA: Addison-Wesley, 1985.
24. Hirsch BJ. Natural support systems and coping with major life changes. Am J Community Psychol 1980; 8: 159-72.
25. Norbeck JS, Lindsey AM, Carrieri VL. The development of an instrument to measure social support. Nurs Res 1981; 30: 264-9.
26. Undén AL, Orth-Gomér K. Development of a social support instrument for use in population surveys. Soc Sci Med 1989; 29: 387-92.
27. Cohen S, Wills AT. The stress buffering hypothesis of social support. Psychol Bull 1985; 98: 310-57.
28. Hobfoll SE. Social support: theory, research, and application from research on women. In Hobfoll SE, ed. Stress. social support and women. Washington, DC: Hemisphere, 1986: 3-14.
29. Franks P, Campbell TL, Shields CG. Social relationships and health: the relative roles of family functioning and social support. Soc Sci Med 1992; 34: 779-88.
30. Wortman CB, Lehman DR. Reactions to victims of life crisis: support attempts that fail. In Sarason IG, Sarason BR, eds. Social support: theory, research and applications. The Hague: Martinus Nijhoff, 1985: 463-89.
31. Hobfoll SE, Leiberman Y. Personality and social resources in immediate and continued stress resistance among women. J Pers Soc Psychol 1987; 52: 18-26.
32. Cohen S, McKay G. Social support, stress and the buffering hypothesis: a theoretical analysis. In Baum A, Singer JE, Taylor SE, eds. Handbook of psychology and health, vol. 4. Hillsdale: LEA, 1984: 253-67.
33. Hobfoll SE. Limitations of social support in the stress process. In Sarason IG, Sarason BR, eds. Social surpport: theory, research and applications. The Hague: Martinus Nijhoff, 1985: 463-89.
34. Cutrona CE. Objective determinants of perceived social support. J Pers Soc Psychol 1986; 50: 349-55.
35. Shinn M, Lehmann S, Wong NW. Social interaction and social support. J Soc Issues 1984; 40: 55-76.
36. Kazak AE, Marvin RS. Differences, difficulties and adaptation: stress and social networks in families with a handicapped child. Fam Relations 1984; 33: 67-76.
37. Engström I. Parental distress and social interaction in families with children with inflammatory bowel disease. J Am Acad Child Adolesc Psychiatry 1991; 30: 904-12.
38. Kazak AE, Barakat LP, Meeske K, Christakis D, Meadows AT, Casey R, Penati B, Stuber ML. Posttraumatic stress, family functioning and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol 1997; 65: 120-9.
39. Gerhardt CA, Vannatta K, McKellop JM, Zeller M, Taylor J, Passo M, Noll RB. Comparing parental distress, family functioning and the role of social support for caregivers with and without a child with juvenile rheumatoid arthritis. J Pediatr Psychol 2003; 28: 5-15.
40. Magni G, Silvestro A, Carli M, De Leo D. Social support and psychological distress of parents of children with acute lymphocytic leukaemia. Br J Med Psychol 1986; 59: 383-5.
41. Kerr SM, McIntosh JB. Coping when a child has a disability. Exploring the impact of parent-to-parent support. Child Care Health Dev 2000; 26: 309-22.
42. Matloff ET, Zimmerman SJ. Framework for proactive parent support group: the Syracuse cystic fibrosis group. J Pediatr Health Care 1996; 10: 264-71.
43. Phillips M. Support groups for parents of chronically ill children. J Pediatr Nurs 1990; 16: 404-6.
44. Seppanen SM, Kyngas HA, Nikkonen MJ. Coping and social support of parents with a diabetic child. Nurs Health Sci 1999; 1: 63-70.
45. Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klips EC. Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. J Pediatr Psychol 2001; 26: 225-35.
46. Speechley KN, Noh S. Surviving childhood cancer, social support, and parents' psychological adjustment. J Pediatr Psychol 1992; 17: 15-31.
47. 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: 190-8.
48. Hobfoll SE, Lerman M. Predicting receipt of social support: a longitudinal study of parents' reactions to their child's illness. Health Psychol 1989; 8: 61-77.
49. Derogatis LR. SCL-90-R. Administration, scoring, and procedures manual for the revised version. Baltimore, 1994.
50. Beck AT, Kouacs M, Weissman A. Hopelessness and suicidal behaviour. J Am Med Assoc 1975; 234: 1146-9.
51. Statistics Sweden 2000. Statistical yearbook of Sweden. SCB 2001. Stockholm: Elanders Gotab, 2000.
52. Lundberg U, Mårdberg B, Frankenhaeuser M. The total workload of male and female white-collar workers as related to age, occupational level, and number of children. Scand J Psychol 1994; 35: 315-27.
53. SoS-rapport. Invandrares hälsa och sociala förhållanden [in Swedish]. 1995: 5.
54. SoS-rapport. Invandrares levnadsvillkor: Levnadsförhållanden hos fyra invandrargrupper födda i Chile, Iran, Polen och Turkiet [in Swedish]. 1998: 1.
55. Sundquist J. Living conditions and health: a population-based study of labour migrants and Latin American refugees in Sweden and those who were repatriated. Scand J Prim Health Care 1995a; 13: 128-34.
56. Sundquist J. Ethnicity, social class and health: A population-based study on the influence of social factors on self-reported illness in 223 Latin American refugees, 333 Finnish and 126 South European labour migrants and 841 Swedish controls. Soc Sci Med 1995; 40: 777-87.
57. Cross WE. Race and ethnicity: effects on social networks. In Cochran M, Larner M, Riley D, Gunnarsson L, Henderson CR, eds. Extending families: the social networks of parents and their children. New York: Cambridge University Press, 1990: 67-85.
58. Tlaskal T. Ethical, psycho-social, legislative and economic aspects of surgical treatment of hypoplastic left heart syndrome. Cas Lek Cesk 2002; 141: 307-11.
59. Moons P, Seibens K, De Geest S, Abraham I, Budts W, Gewillig M. A pilot study of expenditures on, and utilization of resources in, health care in adults with congenital heart disease. Cardiol Young 2000; 11: 301-13.