The care of my child with cancer: A new instrument to measure caregiving demand in parents of children with cancer

Journal of Pediatric Nursing

Volumn 17, Issue 3, 2002, Pages 201-210

  Wells, Diane Keegan ^a   James, Kelly ^b   Stewart, Janet L ^b   Moore, Ida M ^b   Kelly, Katherine Patterson ^b   Moore, Barbara ^b   Bond, Dana ^b   Diamond, Joy ^b   Hall, Brenda ^b   Mahan, Rosemary ^b   Roll, Lona ^b   Speckhart, Beth ^b  

^a UNIVERSITY OF MARYLAND MEDICAL CENTER   (United States)

^b NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CHILD CARE; CHILDHOOD DISEASE; CONTROLLED STUDY; FACTORIAL ANALYSIS; FEMALE; HUMAN; HUMAN EXPERIMENT; MALE; MALIGNANT NEOPLASTIC DISEASE; MEASUREMENT; NORMAL HUMAN; NURSING; PARENT; POPULATION; PSYCHOMETRY; RELIABILITY; VALIDATION PROCESS; ADOLESCENT; ADULT; CAREGIVER; CHILD; EVALUATION; INFANT; METHODOLOGY; NEOPLASM; NURSING ASSESSMENT; PRESCHOOL CHILD; PSYCHOLOGIC TEST; PSYCHOLOGICAL ASPECT; REPRODUCIBILITY;

ADOLESCENT; ADULT; CAREGIVERS; CHILD; CHILD, PRESCHOOL; FACTOR ANALYSIS, STATISTICAL; FEMALE; HUMANS; INFANT; MALE; NEOPLASMS; NURSING ASSESSMENT; PARENTS; PSYCHOLOGICAL TESTS; REPRODUCIBILITY OF RESULTS;

EID: 15944414183     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1053/jpdn.2002.124113     Document Type: Article

References (46)

1. Anderson, J.M. (1990). Home care management in chronic illness and the self-care movement: An analysis of ideologies and economic processes influencing policy decisions. Advances in Nursing Science, 12, 71-83.
2. Baer, D. (1993). Dependent care, caregiver burden, and self-care agency of spouse caregivers. Cancer Nursing, 16, 230-236.
3. Birenbaum, L.K., & Clarke-Steffen, L. (1992). Terminal care costs in childhood cancer. Pediatric Nursing, 18, 285-288.
4. Brown, M.A., & Stetz, K. (1999). The labor of caregiving: A theoretical model of caregiving during potentially fatal illness. Qualitative Health Research, 9, 182-197.
5. Brust, J.D., Leonard B.J., & Sielaff, B.H. (1992). Maternal time and the care of disabled children. Public Health Nursing, 9, 177-184.
6. Burr, B.H., Guyer, B., Todres, I.D., Abrahams, B. & Chiodo, T. (1983). Home care for children on respirators. New England Journal of Medicine, 309, 1319-1323.
7. Canning, R. D., Harris, E. S., & Kelleher, K.J. (1996). Factors predicting distress among caregivers to children with chronic medical conditions. Journal of Pediatric Psychology, 21, 735-749.
8. Carey, P.J., Oberst, M.T., McCubbin, M.A., & Hughes, S.H. (1991). Appraisal and caregiving burden in the family members caring for patients receiving chemotherapy. Oncology Nursing Forum, 18, 1341-1347.
9. Cornman, B.J. (1993). Childhood cancer: Differential effects on the family members. Oncology Nursing Forum, 20, 1559-1566.
10. Dahlquist, L.M., Czyzewski, D.I., & Jones, C.L. (1996). Parents of children with cancer: A longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. Journal of Pediatric Psychology, 21, 541-554.
11. Davis, L.L. (1992). Building a science of caring for caregivers. Family and Community Health, 15, 1-9.
12. Enyert, G., & Burman, M.E. (1999). A qualitative study of self-transcendence in caregivers of terminally ill patients. American Journal of Hospice and Palliative Care, 16, 455-462.
13. Fidler, P.A., & Hibbs, C.J. (1997). Bone marrow transplant today - home tomorrow: Ambulatory care issues in pediatric marrow transplantation. Journal of Pediatric Oncology Nursing, 14, 228-238.
14. Gillis, C.L., & Belza, B.L. (1992). A framework for understanding family caregivers' recovery work after cardiac surgery. Family and Community Health, 15, 41-48.
15. Given, B.A., & Given, C.W. (1991). Family caregiving for the elderly. In J.J. Fitzpatrick, R.L. Taunton, & A.K. Jacox (Eds.), Annual Review of Nursing Research (Vol. 9, pp. 77-101). New York: Springer Publishing Company.
16. Horwitz, A.V., & Reinhard, S.C. (1995). Ethnic differences in caregiving duties and burdens among parents and siblings of persons with severe mental illnesses. Journal of Health and Social Behavior, 36, 138-150.
17. Hymovich, D.P. (1983). The chronicity impact and coping instrument: Parent questionnaire. Nursing Research, 32, 275-281.
18. Jacob, E. (1999). Making the transition from hospital to home: Caring for the newly diagnosed child with cancer. Home Care Providers, 4, 67-73.
19. James, K., Keegan Wells, D., Hinds, P., Kelly, K., Bond, D., Hall, B., Mahan, R., Morre, I., Roll, L., & Speckhart, B. (2002). The care of my child with cancer: Parents perceptions of caregiving demands. Manuscript submitted for publication.
20. Lansky, S.B., Cairns, N.U., Clark, G.M., Lowman, J., Miller, L., & Trueworthy, R. (1979). Childhood cancer: Nonmedical costs of the illness. Cancer, 43, 403-408.
21. Leavitt, M., Martinson, I.M., Liu, C.Y., Armstrong, V., Hornberger, L., Zhang, J.Q., & Han, X. P. (1999). Common themes and ethnic differences in family caregiving the first year after the diagnosis of childhood cancer: Part II. Journal of Pediatric Nursing, 14, 110-122.
22. Leonard, B.J., Brust, J.D., & Nelson, R.P. (1993). Parental distress: Caring for medically fragile children at home. Journal of Pediatric Nursing, 8, 22-30.
23. Mailick, M.D., Holden, G., & Walther, V.N. (1994). Coping with childhood asthma: Caretakers' views. Health and Social Work, 19, 103-111.
24. Marks, N.F. (1996). Caregiving across the lifespan: National prevalence and predictors. Family Relations, 45, 27-36.
25. Martinson, I.M., Leavitt, M., Liu, C.Y., Armstrong, V., Hornberger, L., Zhang, J.Q., & Han, X.P. (1999). Comparison of Chinese and Caucasian families' caregiving to children with cancer at home: Part I. Journal of Pediatric Nursing, 14, 99-109.
26. McCubbin, M.A. (1994). [The Care of My Child]. Unpublished raw data.
27. Miles, M.S., D'Auria, J.P., Hart, E.M., Sedlack, D.A., & Watral, M.A. (1993). Parental role alterations experienced by mothers of children with a life-threatening chronic illness. In S.G. Funk, E.M. Tornquist, M.T. Champagne, & R.A. Wiese (Eds.), Key Aspects of Caring for the Chronically Ill (pp. 281-289). New York: Springer Publishing.
28. Munkres, A., Oberst, M.T., & Hughes, S.H. (1992). Appraisal of illness, symptom distress, self-care burden, and mood states in patients receiving chemotherapy for initial and recurrent cancer. Oncology Nursing Forum, 19, 1202-1209.
29. Munro, B.H. (1997). Correlation. In B.H. Munro (Ed.), Statistical Methods for Health Care Research (3rd ed., pp. 224-245). Philadelphia: Lippincott.
30. Murray, J.S. (2000). Attachment theory and adjustment difficulties in siblings of children with cancer. Issues in Mental Health Nursing, 21, 149-169.
31. Oberst, M.T., Hughes, S.H., Chang, A.S., & McCubbin, M.A. (1991). Self-care burden, stress appraisal, and mood among persons receiving radiotherapy. Cancer Nursing, 14, 71-78.
32. Oberst, M.T., Thomas, S.E., Gass, K.A., & Ward, S.E. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing, 12, 209-215.
33. O'Neill, C., & Sorensen, E.S. (1991). Home care of the elderly: A family perspective. Advances in Nursing Science, 13, 28-37.
34. Perrin, J.M., Shayne, M.W., & Bloom, S.R. (1993). Home and Community Care for Chronically Ill Children. New York: Oxford University Press.
35. Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282, 2215-2219.
36. Schumacher, K.L. (1996). Reconceptualizing family caregiving: Family-based illness care during chemotherapy. Research in Nursing and Health, 19, 261-271.
37. Shapiro, J., Perez, M., & Warden, M.J. (1998). The importance of family functioning to caregiver adaptation in mothers of child cancer patients: Testing a social ecological model. Journal of Pediatric Oncology Nursing, 15, 47-54.
38. Steele, R.G., & Fitch, M.I. (1996). Needs of family caregivers of patients receiving home hospice care for cancer. Oncology Nursing Forum, 23, 823-828.
39. Stein, R.E.K., & Jessop, D.J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97, 354-362.
40. Stein, R.E.K., & Reissman, C.K. (1980). The development of an impact-on-family scale: Preliminary findings. Medical Care, 18, 465-472.
41. Stewart, M.J., Ritchie, J.A., McGrath, P., Thompson, D., & Bruce, B. (1994). Mothers of children with chronic conditions: Supportive and stressful interactions with partners and professionals regarding Caregiving burdens. Canadian Journal of Nursing Research, 26, 61-81.
42. Svavarsdottir, E.K., & McCubbin, M. (1996). Parenthood transition for parents of an infant diagnosed with a congenital heart condition. Journal of Pediatric Nursing, 11, 207-216.
43. Thoma, M.E., Hockenberry-Eaton, M., & Kemp, V. (1993). Life change events and coping behaviors in families of children with cancer. Journal of Pediatric Oncology Nursing, 10, 105-111.
44. Turner-Henson, A., Holaday, B., & Swan, J.H. (1992). When parenting becomes Caregiving: Caring for the chronically ill child. Family and Community Health, 15, 19-30.
45. van Dongen-Melman, J.E., & Sanders-Woudstra, J.A. (1986). Psychosocial aspects of childhood cancer: A review of the literature. Journal of Child Psychology and Psychiatry, 27, 145-180.
46. Vitaliano, P.P., Young, H.M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. The Gerontologist, 31, 67-75.