Pediatric chronic Illness (cancer, cystic fibrosis) effects on well siblings: Parents' voices

Comprehensive Child and Adolescent Nursing

Volumn 32, Issue 2, 2009, Pages 94-113

  Williams, Phoebe Dauz ^a   Ridder, E Lavonne ^b   Setter, Robyn Karlin ^b   Liebergen, Adrienne ^b   Curry, Heather ^c   Piamjariyakul, Ubolrat ^a   Williams, Arthur R ^c  

^a UNIVERSITY OF KANSAS SCHOOL OF NURSING   (United States)

^b UNIVERSITY OF KANSAS MEDICAL CENTER   (United States)

^c CHILDREN S MERCY HOSPITAL   (United States)

Author keywords

Childhood cancer; Content analysis; Cystic fibrosis; Family; Pediatric chronic illness; Well sibling impact by parent report

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHRONIC DISEASE; CYSTIC FIBROSIS; FAMILY HEALTH; FEMALE; HUMAN; MALE; NEOPLASM; PARENT; PSYCHOLOGICAL ASPECT; SIBLING;

ADOLESCENT; CHILD; CHRONIC DISEASE; CYSTIC FIBROSIS; FAMILY HEALTH; FEMALE; HUMANS; MALE; NEOPLASMS; PARENTS; SIBLINGS;

EID: 70649109996     PISSN: 01460862     EISSN: 1521043X     Source Type: Journal    
DOI: 10.1080/01460860902740990     Document Type: Article

References (76)

1. Aitken, T. J. (1992). Gastrointestinal manifestations in the child with cancer. Journal of Pediatric Oncology Nursing 9(3), 99-109.
2. American Cancer Society. Cancer: Basic Facts. http://www.cancer.org/ downloads/STT/ 2008CAFFfinalsecured.pdf Retrieved 11/23/2008.
3. Barbarin, O., Sargent, J., Sahler, O., Carpenter, P., Copeland, D., Dolgin, M., Mulhern, R., Roghmann, K., & Zeltzer, L. (1995). Sibling adaptation to childhood cancer collaborative study: parental views pre- and postdiagnosis adjustment of siblings of children with cancer. Journal of Psychosocial Oncology, 13, 1-20.
4. Bluebond-Langner, M. (1996). In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton, NJ: Princeton University Press.
5. Bluebond-Langner, M. (1978). The Private World of Dying Children. Princeton, NJ: Princeton University Press.
6. Branstetter, J. E., Domian, E. W., Graff, C. J., Piamjariyakul, U., & Williams, P. D. (2008). Communication in families of children with chronic illness or disability. Issues in Comprehensive Pediatric Nursing. 31(4): 171-184.
7. Braud, A. C., Genre, D., Leto, C., Nemer, V., Cailhol, J. F., Macquart-Moulin, G., Maraninchi, D., & Viens, P. (2003). Nurses' repeat measurement of chemotherapy symptoms: Feasibility, resulting information, patient satisfaction. Cancer Nursing 26(6), 468-475.
8. Breslau, N., & Prabucki, K. (1987). Siblings of disabled children: Effects of chronic stress in the family. Archives of General Psychiatry 44, 1040-1046.
9. Carpenter, D. R., & Narsavage, G. L. (2004). One breath at a time: Living with Cystic Fibrosis, Journal of Pediatric Nursing, 19, 25-32.
10. Carr D., Goudas L., & Lawrence D. et al. (2002). Management of cancer symptoms: Pain, depression, and fatigue. Evidence Report/ Technology assessment No. 61. AHRQ Publication No. 02-EO32. Rockville, MD: Agency for Healthcare Research and Quality.
11. Cohen, D., Freidrich, W., Jaworski, T., Copeland, D., & Pendergrass, T. (1995) Pediatric cancer: Predicting sibling adjustment. Journal of Clinical Psychology 50, 303-319.
12. Cummings, P. (1995). Assessing cancer therapy related symptoms in children: Pilot study. Unpublished manuscript, University of Kansas School of Nursing. Kansas City, KS.
13. Cunningham, C., Betsa, N., & Gross, S. (1981). Sibling groups: Interaction with siblings of oncology patients. American Journal of Pediatric Hematology/Oncology, 3, 135-139.
14. Cystic Fibrosis Foundation. What is CF? http://www.cff.org/AboutCF/Faqs/ Retrieved 11/23/2008.
15. Daniels D., Moos R., Billings A., & Miller J. (1987). Psychosocial risk and resilience factors among children with chronic illness, healthy siblings, and healthy controls. Journal of Abnormal Child Psychology 15, 295-308.
16. Davies, B., Whitsett, S. F., Bruce, A., & McCarthy, P. (2002). A typology of fatigue in children with cancer. Journal of Pediatric Oncology Nursing, 19(1), 12-21.
17. Drotar, D. (1997). Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: What have we learned? What do we need to know? Journal of Pediatric Psychology, 22, 149-165.
18. Duvall, E. (1977). Family Development (5th ed.). Philadelphia, PA: Lippincott Williams & Wilkins.
19. Fanos, J., Fahrner, K., Jelveh, M., King, R., & Taeda, D. (2005). The Sibling Center: A pilot program for siblings of children and adolescents with a serious medical condition, Journal of Pediatrics, 143, 831-835.
20. Faux, S. (1991). Sibling relationships in families of congenitally impaired children. Journal of Pediatric Nursing, 6, 175-184.
21. Ferrari, M. (1984). Chronic illness: Effects on siblings. Journal of Child Psychology, Psychiatry, and Allied Disciplines 25, 338-343.
22. Foster, C., Eisner, C., Oades, P., Sheldon, C., Tripp, J., & Goldman, P. et al. (2001). Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: Patient, parent, and sibling accounts. Child: Care, Health, & Development, 27, 348-364.
23. Gallo, A., Breitmayer, B., Knafl, K., & Zoeller, L. (1993). Mothers' perceptions of sibling adjustment and family life in childhood chronic illness. Journal of Pediatric Nursing 8(5), 318-324.
24. Gilliland, B. E., & James, R. K. (1997). Crisis Intervention Strategies, (3rd ed.). Pacific Grove, CA: Brooks/Cole.
25. Gilliss, C., Highley, B., Roberts, B., & Martinson, I. (1989). Toward a Science in Family Nursing. Menlo Park, CA: Addison-Wesley.
26. Hamama. R., Rouen, T., & Faigin, R. (2000). Self-control, anxiety, and loneliness in siblings of children with cancer. Social Work in Health Care, 31(1), 63-83.
27. Hendricks-Ferguson, D. (2000). Crisis intervention strategies when caring for families of children with cancer. Journal of Pediatric Oncology Nursing, 17, 3-11.
28. Hobbs, N., & Perrin, J. (Eds.). (1985). Chronically Ill Children and Their Families. San Francisco: Jossey-Bass.
29. Hockenberrry-Eaton, M., Hinds, P. S., Oneill, J. B., Howard, V., Gattuso, J., & Taylor, J. (1998). Fatigue in children and adolescents with cancer. Journal of Pediatric Oncology Nursing, 14(3), 164-174.
30. Hoekstra-Weebers, J. E., Jaspers, J. P., Kamps, W. A., & Klip, E. C. (2001). Psychological adaptation and social support of parents of pediatric cancer patients: A prospective longitudinal study. Journal of Pediatric Psychology, 26, 225-235.
31. Houtzager, B. A., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2004). Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis. Psychooncology, 13(8), 499-511.
32. Ireys, H., & Silver, E. (1996). Perception of the impact of a child's chronic illness: Does it predict maternal mental health? Developmental & Behavioral Pediatrics, 17, 77-83.
33. Keegan-Wells, J. K., Hinds, P. S., Kelly, K. P., Bond, D., Hall, B., Mahan, R., Moore, I. M., Roll, L., & Speckhart, B. (2002). The care of my child with cancer: Parents' perceptions of caregiving demands. Journal of Pediatric Oncology Nursing, 19(6), 218-228.
34. Kennedy, L., & Diamond, J. (1997). Assessment and management of chemotherapy induced mucositis in children. Journal of Pediatric Oncology, 14(3), 172-182.
35. Kramer, R. F., & Moore, I. M. (1983). Childhood cancer: Meeting the special needs of healthy siblings. Cancer Nursing, 6, 213-217.
36. Kreitler, S., & Arush, M. (2004). Psychosocial Aspects of Pediatric Oncology. London: Wiley.
37. Krippendorf, K. (2004). Content Analysis: An Introduction to its Methodology (2nd ed.). Beverly Hills, CA: Sage.
38. Lobato, D. J., & Kao, B. T. (2005). Brief report: Family-based group intervention for young siblings of children with chronic illness and developmental disability. Journal of Pediatric Psychology, 30(8), 678-682.
39. Martinson, I. M., & Cohen, M. H. (1988). Themes from a longitudinal study of family reactions to childhood cancer. Journal of Psychosocial Oncology, 6, 81-98.
40. McCubbin, M. (1984). Nursing assessment of parental coping with cystic fibrosis. Western Journal of Nursing Research, 6(4), 407-422.
41. Neuhouser M., Patterson R., Schwartz S., Hedderson M., Bowen D., & Standdish L. (2001). Use of alternative medicine in children with cancer in Washington State. Preventive Medicine, 33, 347-354.
42. Newacheck, P., & Taylor, W. (1992). Childhood chronic illness: Prevalence, severity, and impact. American Journal of Public Health, 82, 364-371.
43. Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho- Oncology 13, 390-407
44. Pinkerton, C. R., Michalski, A. J., & Veys, P. A. (1999). Clinical Challenges in Pediatric Oncology. Oxford, UK: Isis Medical Media Ltd.
45. Polit, D., & Beck, C. (2008). Nursing Research: Generating and Assessing Evidence for Nursing Practice (8th ed.). Philadelphia, PA: Lippincott Williams & Wilkins.
46. Quittner, A. L., Opipari, L. C., & Regoli, M. J. (1992). The impact of caregiving and role strain on family life: Comparisons between mothers of children with CF and matched controls. Rehabilitation Psychology, 37, 275-290.
47. Sawyer, M., Antoniou, G., Toogood, I., Rice, M., & Baghurst, P. (2000). Childhood cancer: A 4-year prospective study of the psychological adjustment of children and parents. Journal of Pediatric Hematology Oncology, 22, 214-220.
48. Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: a meta-analysis. Journal of Pediatric Psychology, 27, 699-710.
49. Sidhu, R., Passmore, A., & Baker, D. (2006). The effectiveness of a peer support camp for siblings of children with cancer. Pediatric Blood Cancer, 47(5), 580-588.
50. Skalla K., Bakitas M., Furstenberg C., Ahles T., & Henderson J.(2004). Patients' need for information about cancer therapy. Oncology Nursing Forum, 31(2), 313-319
51. Skolin, I., Hursti, U. K., & Wahlin, Y. B. (2001). Parents' perceptions of their child's food intake after the start of chemotherapy. Journal of Pediatric Oncology, 18, 124-136.
52. Sloper, P. (2000). Experiences and support needs of siblings of children with cancer. Health & Social Care in the Community, 8(5), 290-301.
53. Stein, R. E. K., & Jessop, D. J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97, 354-362.
54. Stein, R. E. K., & Jessop, D. J. (2003). The Impact on Family Scale revisited: Further psychometric data. Journal of Developmental & Behavioral Pediatrics, 24, 9-16.
55. Strawhackerm, M. T., & Wellendorf, J. (2004). Caring for children with cystic fibrosis: A collaborative clinical and school approach. The Journal of School Nursing, 20, 5-11.
56. Tew, B. & Lawrence, K. (1973). Mothers, brothers, and sisters of patients with spina bifida. Develeopmental Medicine & Child Neurology, 15, (Suppl. 29), 69-76.
57. Thompson, R. J., Gustafson, K. E., Hamlett, K. W., & Spock, A. (1992). Stress, coping, and family functioning in the psychological adjustment of mothers and adolescents with CF, Journal of Pediatric Psychology, 17, 573-585.
58. Tritt, S. G. & Esses, L. M. (1988). Psychosocial adaptation of siblings of children with chronic illnesses. American Journal of Orthopsychiatry, 58, 211-220.
59. Van Dyck, P. C., Kogan, M. D., McPherson, M. G., Weissman, G. R., & Newacheck, P. W. (2004). Prevalence and Characteristic of Children with Special Health Care Needs. (reprinted) Archives of Child Health, Pediatrics & Adolescent Medicine, 158, 884-890.
60. Williams, A. R., & DeLurgio, S. A. (1994). Path analysis: Reflections on causal modeling. In K. McCormick, S. Moore, R. Siegel (Eds.), Methodology Perspectives: Clinical Practice Guideline Development (pp. 77-84). AHCPR Pub.95-009. Rockville, MD: AHCPR.
61. Williams, A. R., Williams, P. D., & Huscka, T. (2004). Variables affecting well siblings and mothers in families of children with a chronic illness or disability: Assessing a family interaction model (paper). In Proceedings of the International Nursing Research Congress, Sigma Theta Tau International; Dublin, Ireland.
62. Williams, A., Piamjariyakul, U., Williams, P., Bruggeman, S., & Cabanela, R. (2006). Validity of the new Impact on Family [IOF] Scale. Journal of Pediatrics, 149, 257-261
63. Williams, P. D. (1997). Siblings and pediatric chronic illness: Review of the literature. International Journal of Nursing Studies, 34, 312-323.
64. Williams, P. D., Lorenzo, F., & Borja, M. (1993). Pediatric chronic illness: Effects on siblings and mothers. Maternal-Child Nursing Journal 21, 111-121.
65. Williams, P. D., & Williams, A. R. (1997). Transition from hospital to home by mothers of preterm infants: Path analysis results over three time periods. Families, Systems & Health, 15, 429-446.
66. Williams, P. D., Ducey, K. A., Williams, A. R., Sears, A. M., Tobin-Rommelhart, S. E., & Bunde, P. (1997a). The Therapy-Related Symptom Checklist (TRSC) for oncology patients: A self-report instrument. Oncology Nursing Forum, 24(2), 301.
67. Williams, P. D., Hanson, S., Karlin, R., Ridder, L., Liebergen, A., Olson, J., Barnard, M., & Tobin-Rommelhart, S. (1997b). Outcomes of a nursing intervention for siblings of chronically ill children. Journal of the Society of Pediatric Nurses, 2, 127-137.
68. Williams, P. D., Williams, A. R., Hanson, S., Ridder, L., Liebergen, A., & Karlin, R. (1999). Maternal mood, family cohesion, and perceptions of social support, selfesteem, and mood among siblings of chronically ill children. Children's Health Care, 28, 297-310.
69. Williams, P. D., Williams, A. R., Graff, J. C., Hanson, S., Stanton, A., Hafeman, C., Setter, R. K., Liebergen, A., Ridder, E. L., Curry, H., Barnard, M. U., & Sanders, S. (2003). A community based intervention for siblings and parents of children with chronic illness or disability: The ISEE study. Journal of Pediatrics, 143, 386-393.
70. Williams, P. D., Williams, A. R., Graff, J. C., Hanson, S., Stanton, A., Hafeman, C., Setter, R. K., Liebergen, A., Ridder, E. L., Curry, H., Barnard, M. U., & Sanders, S. (2002). Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine, 25, 411-424.
71. Williams P. D., Piamjariyakul U., Ducey K., Badura J., Boltz K., Olberding K., Wingate A., & Williams A. R. (2006). Cancer treatment, symptom monitoring and self-care in adults: A pilot study. Cancer Nursing 29(4), 347-355.
72. Williams, P. D., Schmideskamp, J., Ridder, L. E., & Williams, A. R. (2006b). Symptom monitoring and dependent care during cancer treatment in children. Cancer Nursing 29(3), 199-297
73. Williams, P. D., & Williams, A. R. (2005). Nursing, social science methods used in. In K. Kempf-Leonard (Ed.), Encyclopedia of Social Measurement (pp. 893-904). United Kingdom: Elsevier.
74. Williams, P. D., Williams, A. R., et al. (2008). The TRSC-C, Therapy-Related Symptom Checklist-Children (paper). In Proceedings of the International Nursing Research Congress, Sigma Theta Tau International; Singapore, July.
75. Wood, B., Boyle, J.,Watkins, J., Noquiera, J., Zimand, E., & Carroll, L. (1988). Sibling psychological status and style as related to the disease of their chronically ill brother or sister: implications for models of biopsychosocial interaction. Developmental and Bahavioral Pediatrics 7, 66-72.
76. Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in crisis: Conceptualizing mothers of children with cancer. Social Science and Medicine, 55:1835-1847.