Factors influencing satisfaction and well-being among parents of congenital heart disease children: Development of a conceptual model based on the literature review

Scandinavian Journal of Caring Sciences

Volumn 21, Issue 1, 2007, Pages 106-117

  Lawoko, Stephen ^a  

^a Stockholm Centre of Public Health   (Sweden)

Author keywords

Congenital heart disease; Family health; Parents; Psychosocial resources; Review; Satisfaction; Social vulnerability; Well being

Indexed keywords

ADULT; CHILD; HEART DISEASE; HUMAN; PARENT; PATIENT SATISFACTION; PSYCHOLOGICAL ASPECT; REVIEW; THEORETICAL MODEL;

ADULT; CHILD; HEART DISEASES; HUMANS; MODELS, THEORETICAL; PARENTS; PATIENT SATISFACTION;

EID: 34047222158     PISSN: 02839318     EISSN: 14716712     Source Type: Journal    
DOI: 10.1111/j.1471-6712.2007.00444.x     Document Type: Review

References (78)

1. Moller JH, Taubert KA, Allen HD, Clark BB, Lauer RM. Cardiovascular health and disease in children: current status. Circulation 1994; 89: 923-30.
2. Report of the British Cardiac Society Working Party. Grownup congenital heart (GUCH) disease: current needs and provision of services for adolescents and adults with congenital heart disease in the UK. Heart 2002; 88 (Suppl. 1): 1-14.
3. Kong SG, Tay JS, Yip WC, Chay SO. Emotional and social effects of congenital heart diseases in Singapore. Aust Paediatr J 1986; 22: 101-6.
4. Kokkonen J, Paavilainen T. Social adaptation of young adults with congenital heart disease. Int J Cardiol 1992; 36: 23-29.
5. Utens EM, Verhulst PC, Meijboom FJ, Duivenvoorden HJ, Erdman RA, Bos E, Roelondt JT, Hess J. Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med 1993; 23: 415-24.
6. Brandhagen DJ, Feldt RH, Williams DE. Long-term psychologic implications of congenital heart disease: a 25-year follow-up. Mayo Clin Proc 1991; 66: 474-9.
7. Popelova J, Slavik Z, Skovranek J. Are cyanosed adults with congenital cardiac malformations depressed? Cardiol Young 2001; 11: 379-84.
8. Blazer D II. Mood disorders and epidemiology. In Comprehensive Textbook of Psychiatry/IV (Kaplan HI, Sadock BJ eds), 1995, Williams and Wilkins, Baltimore, USA, 1079-89.
9. Horwath E, Weissman MM. Epidemiology of depression and anxiety disorders. In Textbook in Psychiatric Epidemiology (Tsuang MT, Tohen M, Zahner GEP eds), 1995, John Wiley & Sons, New York, USA, 317-44.
10. Kaelber CT, Moul DE, Farmer ME. Epidemiology of depression. In Handbook of Depression (Beckham EE, Leber WR eds), 1995, The Guilford Press, New York, USA, 3-35.
11. Smith AL, Weissman MM. Epidemiology. In Handbook of Affective Disorders (Paykel ES ed.), 1992, Churchill Livingstone, New York, USA, 111-29.
12. SOU. Needs and Resources within the Health Care: Part A. An Analysis. 1996, Swedish Government Official Report, SOU, Stockholm, Sweden (in Swedish), 163.
13. SOU. Needs and Resources within the Health Care: Part B. An Analysis. 1996, Swedish Government Official Report, SOU, Stockholm, Sweden (in Swedish), 163.
14. LaFerriere R. Client satisfaction with home health care nursing. J Community Health Nurs 1993; 10: 67-76.
15. Larsen DL, Attkisson CC, Hargreaves WA, Tuan DN. Assessment of client/patient satisfaction: development of a general scale. Eval Program Plann 1979; 2: 197-207.
16. Cleary PD, McNeal BJ. Patient satisfaction as an indicator of quality of care. Inquiry 1988; 25: 25-36.
17. Avis M, Bond M, Aurther A. Satisfying solution? A review of some unresolved issues in the measurement of patient satisfaction. J Adv Nurs 1995; 22: 316-22.
18. Donabedian A. The quality of care - how can it be assessed? J Am Med Assoc 1988; 260: 1743-8.
19. Vuori H. Patient satisfaction - does it matter? Qual Assur Health Care 1991; 3: 183-9.
20. Johansson P, Oleni M, Fridlund B. Patient satisfaction with nursing care in the context of health care: a literature study. Scand J Caring Sci 2002; 16: 337-44.
21. Baine S, Rosenbaum P, King S. Chronic childhood illnesses: what aspects of caregiving do parents value? Child Care Health Dev 1995; 21: 291-304.
22. Charney EB. Parental attitudes towards management of newborns with myelomeningocele. Dev Med Child Neural 1990; 32: 14-19.
23. Elder JH. In-home communication intervention training for parents of multiply handicapped children. Sch Inq Nurs Pract 1995; 9: 71-92.
24. Jansson A, Isacsson A, Kornfalt R, Lindholm LH. Quality in healthcare. The views of mothers and public health nurses. Scand J Caring Sci 1998; 12: 195-204.
25. Callery P, Smith L. A study of role negotiation between nurses and the parents of hospitalized children. J Adv Nurs 1991; 16: 772-8.
26. Harrison H. The principles for family-centered neonatal care. Pediatrics 1993; 92: 643-50.
27. Kristjánsdóuir G, Perceived importance of needs expressed by parents of hospitalized two- to six-year-olds. Scand J Caring Sci 1995; 9: 95-103.
28. Shields L, King SJ. Qualitative analysis of the care of children in hospital in four countries - Part 1. J Pediatr Nurs 2001; 16: 137-45.
29. Wharton RH, Levine KR, Buka S, Emanuel L. Advance care planning for children with special health care needs: a survey of parental attitudes. Pediatrics 1996; 97: 682-7.
30. 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 Adolsc Psychiatry 2001; 40: 847-54.
31. Kendall L, Sloper P, Lewin RJ, Persons JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 3-6.
32. Silverman D, Hilliard R, Baruch G, Shinebourne E. Factors influencing parental participation in a paediatric cardiology outpatient clinic. In J Cardiol 1984; 6: 689-95.
33. Lawoko S, Soares JJF. Satisfaction with care: a study of parents of children with congenital heart disease and parents of children with other diseases. Scand J Caring Sci 2004; 18: 90-102.
34. Odegard KG, Modest SA, Laussen PC. A survey of parental satisfaction during parent present induction of anaesthesia for children undergoing cardiovascular surgery. Paediatr Anaesth 2002; 12: 261-6.
35. Young PC, Shyr Y, Schork MA. The role of the primary care physician in the care of children with serious heart disease. Pediatrics 1994; 94: 284-90.
36. Kaden GG, McCarter RJ, Johnson SF, Ferencz C. Physician-patient communication: understanding congenital heart disease. Am J Dis Child 1985; 139: 995-9.
37. Bulat DC, Kantoch MJ. How much do parents know about their children's heart condition and prophylaxis against endocarditis? Can J Cardiol 2003; 19: 501-6.
38. Beeri M, Haramati Z, Rein JJ, Nir A. Parental knowledge and views of pediatric congenital heart disease. Isr Med Assoc J 2001; 3: 194-7.
39. Chan CS, Molassiotis A. The effects of an educational programme on the anxiety and satisfaction level of parents having parent present induction and visitation in a postanaesthesia care unit. Paediatr Anaesth 2002; 12: 131-9.
40. Pinelli JM. A comparison of mothers concerns regarding the care-taking task of newborns with congenital heart disease before and after assuming their care. J Adv Nurs 1981; 6: 261-70.
41. Docherly SL, Miles MS, Holditch-Davis D. Worry about child health in mothers of hospitalised medically fragile infants. Adv Neonatal Care 2002; 2: 84-92.
42. Lee SL, Chen YC. Stressors and coping behaviours of mothers with child receiving open heart surgery [in Chinese). Hu Li Yan Jiu 2001; 9: 172-82.
43. Rodrigue JR, MacNaughton K, Hoffman RG III el. al. Transplantation in children. A longitudinal assessment of mothers' stress, coping, and perception of family functioning. Psychosomatics 1997; 38: 478-86.
44. Uzark K, Crowley D. Family stress after pediatric heart transplantation. Prog Cardiovasc Nurs 1989; 4: 23-27.
45. Gardner FV, Freeman NH, Black AM, Angelini GD et al. Disturbed mother-infant interaction in association with congenital heart disease. Heart 1996; 76: 56-59.
46. Carey LK, Nicholson BC, Fox RA. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 2002; 17: 174-83.
47. Joesch JM, Smith KR. Children's health and their mothers risk of divorce separation. Soc Biol 1997; 44: 159-69.
48. 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.
49. 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.
50. Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163-8.
51. Pelchat D, Ricard N, Bouchard JM, Perreault M et al. Adaptation of parents in relation to their 6-month-old infant's type of disability. Child Care Health Dev 1999; 25: 377-97.
52. 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.
53. Ferrans CE. Quality of life: conceptual issues. J Adv Nurs 1992; 17; 795-800.
54. Frank-Stromborg M. Instruments for Clinical Nursing Research. 1988, Appleton & Lange, Norwalk, CT, USA.
55. McDowell I, Newell C. Measuring Health: A Guide to Rating Scales and Questionnaires. 1987, Oxford University Press, New York, USA.
56. Fayers PM, Machin D. (eds) Quality of Life: Assessment, Analysis and Interpretation. 2000, John Wiley & Sons, New York, USA, 1-54.
57. Bowling A. (ed.) Measuring Disease: A Review of Disease-specific Quality of Life Measurement Scales. 1995, Open University Press, Philadelphia, USA, 1-31.
58. Bowling A. (ed.) Research Methods in Health: Investigating Health and Health Services. 1997, Open University Press, Philadelphia, USA, 1-55.
59. Montazeri A, Milroy R, Gillis CR, McEwen J. Quality of life: perception of lung cancer patients. Eur J Cancer 1996; 32: 2284-9.
60. Forsberg C. The Sense of Well-being in a Group of Patients with Castro-intestinal Cancer (PhD Dissertation). 1996, Karolinska Institute, Stockholm.
61. 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.
62. Cohen S, Wills AT. The stress buffering hypothesis of social support. Psychol Bull 1985; 98: 310-57.
63. Hobfoll SE. Social support: theory, research, and application from research on women. In Stress, Social Support and Women (Hobfoll SE ed.), 1986, Hemisphere, Washington, DC, USA, 3-14.
64. McCubbin HI, Petterson J. The family stress process: the double ABCX model of adjustment and adaptation. Marriage Fam Rev 1983; 6: 7-37.
65. Rankin SH, Monahan P. Great expectations: perceived social support in couples experiencing cardiac surgery. Fam Relat 1991; 40: 297-302.
66. Cutrona CE. Objective determinants of perceived social support. J Pers Soc Psychol 1986; 50: 349-55.
67. Shinn M, Lehmann S, Wong NW. Social interaction and social support, J Soc Issues 1984; 40: 55-76.
68. Lawoko S, Soares JJF. Social support among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Scand J Occup Ther 2003; 10: 177-87.
69. Sparacino CS, Tong EM, Messias DK, Foote D, Chesla CA, Gilliss GL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 1997; 26: 187-95.
70. Ludlow LH, Levy S. Personal space as a function of infant illness: an application of multidimensional scaling. J Pediatr Psychol 1984; 9: 331-47.
71. 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.
72. Phipps S, Drotar D. Determinants of parenting stress in home apnea monitoring. J Pediatr Psychol 1990; 15: 385-400.
73. Storhaug K. Aspects of living conditions among groups of disabled children and their families in Norway: family situation, mother's health, financial assistance. Soc Sci Med 1983; 17: 1837-45.
74. 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.
75. Viskonti K, Saudi no KJ, Rappaport LA, Newburger JW, Bellinger DC. Influence of parental stress and social support on the behavioural adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 2002; 23: 314-21.
76. Linder R. Mothers of disabled children: the value of weekly group meetings. Dev Med Child Neurol 1970; 12: 202-6.
77. Rona RJ, Smeeton NC, Beech R, Barnett A, Sharland G. Anxiety and depression in mothers related to severe malformation of the heart of the child and foetus. Acta Paediatr 1998; 87: 201-5.
78. Hill R. Generic features of families under stress. Soc Casework 1958; 39: 139-50.