Psychosocial experiences of parents of a child with imperforate anus

Journal for Specialists in Pediatric Nursing

Volumn 14, Issue 4, 2009, Pages 221-229

  Nisell, Margret ^a   Öjmyr Joelsson, Maria ^b   Frenckner, Björn ^c   Rydelius, Per Anders ^d   Christensson, Kyllike ^e,f  

^a Red Cross University College   (Sweden)

^b Quality Coordinator of Nursing

^c Pediatric Surgery Unit   (France)

^d Child and Adolescent Psychiatric Unit   (Bahrain)

^e Reproductive and Perinatal Health Care Unit

^f KAROLINSKA UNIVERSITY HOSPITAL   (Sweden)

Author keywords

Children with imperforate anus; Nursing; Parents; Positive experiences; Psychosocial; Quantitative qualitative

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ANUS ATRESIA; ARTICLE; ATTITUDE TO HEALTH; CHI SQUARE DISTRIBUTION; CHILD; COMPARATIVE STUDY; COST OF ILLNESS; CROSS-SECTIONAL STUDY; FEMALE; HUMAN; JUVENILE RHEUMATOID ARTHRITIS; LIFE EVENT; MALE; NONPARAMETRIC TEST; NURSE ATTITUDE; NURSING; NURSING METHODOLOGY RESEARCH; PARENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUESTIONNAIRE; RETROSPECTIVE STUDY; SOCIAL SUPPORT; STATISTICAL MODEL; SWEDEN;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ANUS, IMPERFORATE; ARTHRITIS, JUVENILE RHEUMATOID; ATTITUDE TO HEALTH; CHI-SQUARE DISTRIBUTION; CHILD; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; LIFE CHANGE EVENTS; LOGISTIC MODELS; MALE; NURSE'S ROLE; NURSING METHODOLOGY RESEARCH; PARENTS; QUALITATIVE RESEARCH; QUESTIONNAIRES; RETROSPECTIVE STUDIES; SOCIAL SUPPORT; STATISTICS, NONPARAMETRIC; SWEDEN;

EID: 70349662401     PISSN: 15390136     EISSN: 17446155     Source Type: Journal    
DOI: 10.1111/j.1744-6155.2009.00192.x     Document Type: Article

References (49)

1. Aite, L., Trucchi, A., Nahom, A., Zaccara, A., La Sala, E. Bagolan, P. (2003). Antenatal diagnosis of surgically correctable anomalies: Effects of repeated consultations on parental anxiety. Journal of Perinatology, 23 (8 652 654.
2. Barlow, J. Coren, E. (2004). Parent-training programmes for improving maternal psychosocial health. Cochrane Database System Review, Issue 1, Art. No. CD002020.
3. Barlow, J. H. Ellard, D. R. (2004). Psycho-educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 30 (6 637 645.
4. Barlow, J. H. Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32 (1 19 31.
5. Bauman, L. J., Drotar, D., Leventhal, J. M., Perrin, E. C. Pless, I. B. (1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics, 100 (2 Pt 1 244 251.
6. Berntsson, L. T. Kohler, L. (2001). Long-term illness and psychosomatic complaints in children aged 2-17 years in the five Nordic countries. Comparison between 1984 and 1996. European Journal of Public Health, 11 (1 35 42. (Pubitemid 32230039)
7. Bursch, B. Hyman, P. E. (2006). Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members. Gastroenterology Nursing, 29 (3 209 216.
8. Carnevale, F. A., Alexander, E., Davis, M., Rennick, J. Troini, R. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117 (1 e48 e60.
9. Chernoff, R. G., List, D. G., DeVet, K. A. Ireys, H. T. (2001). Maternal reports of raising children with chronic illnesses: The prevalence of positive thinking. Ambulatory Pediatrics, 1 (2 104 107.
10. Crowe, T. K., VanLeit, B. Berghmans, K. K. (2000). Mothers' perceptions of child care assistance: The impact of a child's disability. American Journal of Occupational Therapy, 54 (1 52 58.
11. Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A. Hallberg, L. R. (2006). Stress and well-being among parents of children with rare diseases: A prospective intervention study. Journal of Advanced Nursing, 53 (4 392 402.
12. Diseth, T., Emblem, R. Vandvik, I. H. (1995). Adolescents with anorectal malformations and their families: Examples of hidden psychosocial trauma. Family System Medicine, 13 (2 215 231.
13. Diseth, T. H., Egeland, T. Emblem, R. (1998). Effects of anal invasive treatment and incontinence on mental health and psychosocial functioning of adolescents with Hirschsprung's disease and low anorectal anomalies. Journal of Pediatric Surgery, 33 (3 468 475.
14. Eiserman, W. (2001). Unique outcomes and positive contributions associated with facial difference: Expanding research and practice. Cleft Palate-Craniofacial Journal, 38 (3 236 244.
15. Erickson, D. V. Ray, L. D. (2004). Children with chronic continence problems: The challenges for families. Journal of Wound Ostomy and Continence Nursing, 31 (4 215 222.
16. Folkman, S. Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55 (6 647 654.
17. Goble, L. A. (2004). The impact of a child's chronic illness on fathers. Issues in Comprehensive Pediatric Nursing, 27 (3 153 162.
18. Hastings, R. P., Beck, A. Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family: Mothers' and fathers' perceptions. Journal of Intellectual Disabilities, 9 (2 155 165.
19. Hauser-Cram, P., Warfield, M. E., Shonkoff, J. P., Krauss, M. W., Sayer, A. Upshur, C. C. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66 (3 i viii, 1 114 discussion 115 126.
20. Holschneider, A., Hutson, J., Peña, A., Beket, E., Chatterjee, S., Coran, A., et al 2005). Preliminary report on the International Conference for the Development of Standards for the Treatment of Anorectal Malformations. Journal of Pediatric Surgery, 40 (10 1521 1526.
21. Hunfeld, J. A., Tempels, A., Passchier, J., Hazebroek, F. W. Tibboel, D. (1999). Brief report: Parental burden and grief one year after the birth of a child with a congenital anomaly. Journal of Pediatric Psychology, 24 (6 515 520.
22. Immelt, S. (2006). Psychological adjustment in young children with chronic medical conditions. Journal of Pediatric Nursing, 21 (5 362 377.
23. Johnson, B. S. (2000). Mothers' perceptions of parenting children with disabilities. MCN American Journal of Maternal Child Nursing, 25 (3 127 132.
24. Kearney, P. M. Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34 (5 582 592.
25. Kerr, S. M. McIntosh, J. B. (2000). Coping when a child has a disability: Exploring the impact of parent-to-parent support. Child: Care Health and Development, 26 (4 309 322.
26. Kiely, E. M. Peña A. (1998). Anorectal malformations. In J. A. O'Neill (Ed.), Pediatric surgery (5th ed., Vol. 2, pp. 1425 1448). St. Louis, MO : Mosby.
27. Levitt, M. A. Peña, A. (2007). Anorectal malformations. Orphanet, Journal of Rare Diseases, 2, 33.
28. Lindblad, B. M., Holritz-Rasmussen, B. Sandman, P. O. (2007). A life enriching togetherness - meanings of informal support when being a parent of a child with disability. Scandinavian Journal of Caring Science, 21 (2 238 246.
29. Ludman, L., Spitz, L. Kiely, E. M. (1994). Social and emotional impact of faecal incontinence after surgery for anorectal abnormalities. Archives of Disease in Childhood, 71 (3 194 200.
30. Lustig, J. L., Ireys, H. T., Sills, E. M. Walsh, B. B. (1996). Mental health of mothers of children with juvenile rheumatoid arthritis: Appraisal as a mediator. Journal of Pediatric Psychology, 21 (5 719 733.
31. McNeill, T. (2004). Fathers' experience of parenting a child with juvenile rheumatoid arthritis. Qualitative Health Research, 14 (4 526 545.
32. Miles, M. S., Holditch-Davis, D., Burchinal, P. Nelson, D. (1999). Distress and growth outcomes in mothers of medically fragile infants. Nursing Research, 48 (3 129 140.
33. Murphy, N. A., Christian, B., Caplin, D. A. Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33 (2 180 187.
34. Nisell, M., Öjmyr-Joelsson, M., Frenckner, B., Rydelius, P. A. Christensson, K. (2003). How a family is affected when a child is born with anorectal malformation. Interviews with three patients and their parents. Journal of Pediatric Nursing, 18 (6 423 432.
35. O'Cathain, A., Murphy, E. Nicholl, J. (2007). Why, and how, mixed methods research is undertaken in health services research in England: A mixed methods study. BMC Health Service Research, 7 (85).
36. Öjmyr-Joelsson, M., Nisell, M., Frenckner, B., Rydelius, P. A. Christensson, K. (2006). High and intermediate imperforate anus: Psychosocial consequences among school-aged children. Journal of Pediatric Surgery, 41 (7 1272 1278. (Pubitemid 43977775)
37. Peña, A. Hong, A. (2000). Advances in the management of anorectal malformations. American Journal of Surgery, 180 (5 370 376.
38. Peña, A., Guardino, K., Tovilla, J. M., Levitt, M. A., Rodriguez, G. Torres, R. (1998). Bowel management for fecal incontinence in patients with anorectal malformations. Journal of Pediatric Surgery, 33 (1 133 137.
39. Peña, A., Migotto-Krieger, M. Levitt, M. A. (2006). Colostomy in anorectal malformations: A procedure with serious but preventable complications. Journal of Pediatric Surgery, 41 (4 748 756 discussion 748 756.
40. Pless, I. B. Roghmann, K. J. (1971). Chronic illness and its consequences: Observations based on three epidemiologic surveys. Journal of Pediatrics, 79 (3 351 359.
41. Polit, D. F. Beck, C. T. (2004). Nursing research: Principles and methods (7th ed.). Philadelphia : Lippincott Williams & Wilkins.
42. Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al 2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115 (6 e626 e636.
43. Sandelowski, M. (2000). Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Research in Nursing & Health, 23 (3 246 255.
44. Scorgie, K. Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38 (3 195 206.
45. Silver, E. J., Westbrook, L. E. Stein, R. E. (1998). Relationship of parental psychological distress to consequences of chronic health conditions in children. Journal of Pediatric Psychology, 23 (1 5 15.
46. Skari, H., Malt, U. F., Bjornland, K., Egeland, T., Haugen, G., Skreden, M., et al 2006). Prenatal diagnosis of congenital malformations and parental psychological distress - a prospective longitudinal cohort study. Prenatal Diagnosis, 26 (11 1001 1009.
47. Swallow, V. M. Jacoby, A. (2001). Mothers' coping in chronic childhood illness: The effect of presymptomatic diagnosis of vesicoureteric reflux. Journal of Advanced Nursing, 33 (1 69 78.
48. Trute, B., Hiebert-Murphy, D. Levine, K. (2007). Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual Development Disabilities, 32 (1 1 9.
49. Weindling, A. M., Cunningham, C. C., Glenn, S. M., Edwards, R. T. Reeves, D. J. (2007). Additional therapy for young children with spastic cerebral palsy: A randomised controlled trial. Health Technology Assessment, 11 (16 iii iv, ix x, 1 71.