A longitudinal study of families with technology-dependent children

Research in Nursing and Health

Volumn 35, Issue 1, 2012, Pages 40-54

  Toly, Valerie Boebel ^a   Musil, Carol M ^a   Carl, John C ^b,c  

^a CASE WESTERN RESERVE UNIVERSITY   (United States)

^b CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c LERNER RESEARCH INSTITUTE   (United States)

Author keywords

Child; Depressive symptoms; Family functioning; Longitudinal; Normalization; Technology dependent

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; CAREGIVER; CHILD; DEPRESSION; FAMILY; FEMALE; HANDICAPPED CHILD; HUMAN; INFANT; INTERVIEW; LONGITUDINAL STUDY; MEDICAL TECHNOLOGY; MIDDLE AGED; PRESCHOOL CHILD; PSYCHOLOGIC TEST; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; REGRESSION ANALYSIS; TIME;

ADOLESCENT; ADULT; AGED; BIOMEDICAL TECHNOLOGY; CAREGIVERS; CHILD; CHILD, PRESCHOOL; DEPRESSION; DISABLED CHILDREN; FAMILY; FEMALE; HUMANS; INFANT; INTERVIEWS AS TOPIC; LONGITUDINAL STUDIES; MIDDLE AGED; PSYCHOLOGICAL TESTS; QUESTIONNAIRES; REGRESSION ANALYSIS; TIME FACTORS; YOUNG ADULT;

EID: 84855260212     PISSN: 01606891     EISSN: 1098240X     Source Type: Journal    
DOI: 10.1002/nur.21454     Document Type: Article

References (59)

1. Anderson, J. M., & Elfert, H. (1989). Managing chronic illness in the family: Women as caretakers. Journal of Advanced Nursing, 14, 735-743.
2. Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51, 1173-1182.
3. 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.
4. 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, e48-e60.
5. Case-Smith, J. (2004). Parenting a child with a chronic medical condition. American Journal of Occupational Therapy, 58, 551-560.
6. Center for Disease Control and Prevention. Child health. Retrieved October 26, 2011 from.
7. Cohen, M. H. (1993). The unknown and the unknowable-Managing sustained uncertainty. Western Journal of Nursing Research, 15, 77-96.
8. Cohen, M. H. (1999). The technology-dependent child and the socially marginalized family: A provisional framework. Qualitative Health Research, 9, 654-668.
9. Dashiff, C. J. (1993). Parents' perceptions of diabetes in adolescent daughters and its impact on the family. Journal of Pediatric Nursing, 8, 361-369.
10. Deatrick, J. A., Thibodeaux, A. G., Mooney, K., Schmus, C., Pollack, R., & Davey, B. H. (2006). Family management style framework: A new tool with potential to assess families who have children with brain tumors. Journal of Pediatric Oncology Nursing, 23, 19-27.
11. Dodgson, J. E., Garwick, A., Blozis, S. A., Patterson, J. M., Bennett, F. C., & Blum, R. W. (2000). Uncertainty in childhood chronic conditions and family distress in families of young children. Journal of Family Nursing, 6, 252-266.
12. Drotar, D., Agle, D. P., Eckl, C. L., & Thompson, P. A. (1997). Correlates of psychological distress among mothers of children and adolescents with hemophilia and HIV infection. Journal of Pediatric Psychology, 22, 1-14.
13. Fields, A. (2005). Discovering statistics using SPSS. London, UK: Sage.
14. Fleming, J., Challela, M., Eland, J., Hornick, R., Johnson, P., Martinson, I., Young, A. (1994). Impact on the family of children who are technology-dependent and cared for in the home. Pediatric Nursing, 20, 379-388.
15. Fox-Wasylyshyn, S. M., & El-Masri, M. M. (2005). Handling missing data in self-report measures. Research in Nursing & Health, 8, 488-495.
16. Frankel, K., & Wamboldt, M. Z. (1998). Chronic childhood illness and maternal mental health-Why should we care? The Journal of Asthma, 35, 621-630.
17. Gallo, A. M., & Knafl, K. A. (1998). Parents' reports of "tricks of the trade" for managing childhood chronic illness. Journal of the Society of Pediatric Nurses, 3, 93-100.
18. Gonzalez, E. (1997). Resourcefulness, appraisals, and coping efforts of family caregivers. Issues in Mental Health Nursing, 18, 209-227.
19. Haase, J. E., & Rostad, M. (1994). Experiences of completing cancer therapy: Children's perspectives. Oncology Nursing Forum, 21, 1483-1492; discussion 1493-1494.
20. Heyman, M. B., Harmatz, P., Acree, M., Wilson, L., Moskowitz, J. T., Ferrando, S., & Folkman, S. (2004). Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children. Journal of Pediatrics, 145, 511-516.
21. Hock-Long, L. E. (1997). Pediatric home ventilator care: Family caregiver perspective. Unpublished doctoral dissertation, University of Pennsylvania, Philadelphia.
22. Holmbeck, G. N., Bruno, E. F., & Jandasek, B. (2006). Longitudinal research in pediatric psychology: An introduction to the special issue. Journal of Pediatric Psychology, 31, 995-1001.
23. Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11, 315-326.
24. Knafl, K. A., Darney, B. G., Gallo, A. M., & Angst, D. B. (2010). Parental perception of the outcome and meaning of normalization. Research in Nursing & Health, 33, 87-98.
25. Knafl, K. A., & Deatrick, J. A. (2002). The challenge of normalization for families of children with chronic conditions. Pediatric Nursing, 28, 49-53, 56.
26. Knafl, K., & Deatrick, J. (2003). Further refinement of the family management style framework. Journal of Family Nursing, 9, 232-256.
27. Knafl, K. A., & Deatrick, J. A. (2006). Family management style and the challenge of moving from conceptualization to measurement. Journal of Pediatric Oncology Nursing, 23, 12-18.
28. Knafl, K. A., & Gilliss, C. L. (2002). Families and chronic illness: A synthesis of current research. Journal of Family Nursing, 8, 178-198.
29. Knafl, K., & Zoeller, L. (2000). Childhood chronic illness: A comparison of mothers' and fathers' experiences. Journal of Family Nursing, 6, 287-302.
30. Kuster, P. A. (2002). Health outcomes of mothers caring for ventilator-assisted children at home: The influence of social support, coping and community resources. Unpublished doctoral dissertation, UCLA, Los Angeles, CA.
31. Kuster, P. A., & Badr, L. K. (2006). Mental health of mothers caring for ventilator-assisted children at home. Issues in Mental Health Nursing, 27, 817-835.
32. Lee, D. A. (1996). Motherhood as usual: Two studies of African American women with technology dependent infants. Unpublished doctoral dissertation, University of North Carolina at Chapel Hill.
33. 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.
34. Longley, R. (2010). Almost half of Americans take at least one prescription drug: Half of elderly take three or more. Retrieved October 26, 2011 from.
35. Miles, M. S., Holditch-Davis, D., Burchinal, P., & Nelson, D. (1999). Distress and growth outcomes in mothers of medically fragile infants. Nursing Research, 48, 129-140.
36. Murphy, F. (1994). Relationship between family use of normalization and psychosocial adjustment in children with chronic physical disorders. Unpublished master's thesis, McGill University, Montreal, Quebec, Canada.
37. Murphy, K. E. (1997). Parenting a technology assisted infant: Coping with occupational stress. Social Work in Health Care, 24, 113-126.
38. Musil, C. M., Haug, M. R., & Warner, C. D. (1998). Stress, health, and depressive symptoms in older adults at three time points over 18 months. Issues in Mental Health Nursing, 19, 207-224.
39. Myers, J. K., & Weissman, M. M. (1980). Use of a self-report symptom scale to detect depression in a community sample. American Journal of Psychiatry, 137, 1081-1084.
40. O'Brien, M. E. (2001). Living in a house of cards: Family experiences with long-term childhood technology dependence. Journal of Pediatric Nursing, 16, 13-22.
41. O'Brien, M. E., & Wegner, C. B. (2002). Rearing the child who is technology-dependent: Perceptions of parents and home care nurses. Journal for Specialists in Pediatric Nursing, 7, 7-15.
42. Office of Technology Assessment. (1987). Technology-dependent children: Hospital care vs. home care: A technical memorandum. Washington, DC: Congress of the United States.
43. Paterson, B. L. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship, 33, 21-26.
44. Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401.
45. Ratliffe, C. E., Harrigan, R. C., Haley, J., Tse, A., & Olson, T. (2002). Stess in families with medically fragile children. Issues in Comprehensive Pediatric Nursing, 25, 167-188.
46. Rehm, R. S., & Bradley, J. F. (2005). Normalization in families raising a child who is medically fragile/technology-dependent and developmentally delayed. Qualitative Health Research, 15, 807-820.
47. Roberts, C. S., & Feetham, S. L. (1982). Assessing family functioning across three areas of relationships. Nursing Research, 31, 231-235.
48. Shore, C. P., Austin, J. K., Huster, G. A., & Dunn, D. W. (2002). Identifying risk factors for maternal depression in families of adolescents with epilepsy. Journal for Specialists in Pediatric Nursing, 7, 71-80.
49. 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, 5-15.
50. Simmons, T., & Dye, J. L. (2003). Grandparents living with grandchildren: 2000 (Census Bureau Publication No. C2KBR-31). Washington, DC: U.S. Census Bureau.
51. Stein, R. E., & Jessop, D. J. (1990). Functional StatusII®. A measure of child health status. Medical Care, 28, 1041-1055.
52. Sullivan-Bolyai, S., Knafl, K., Deatrick, J., & Grey, M. (2003). Maternal management behaviors for young children with type 1 diabetes. MCN, American Journal of Maternal Child Nursing, 28, 160-166.
53. Tabachnick, B. G., & Fidell, L. S. (2007). Using multivariate statistics (5th ed.). Boston, MA: Pearson/Allyn & Bacon.
54. Thyen, U., Terres, N. M., Yazdgerdi, S. R., & Perrin, J. M. (1998). Impact of long-term care of children assisted by technology on maternal health. Journal of Developmental and Behavioral Pediatrics, 19, 273-282.
55. Toly, V. B., Musil, C. M., & Carl, J. C., (2010) Families with children who are technology-dependent: Normalization and family functioning. Western Journal of Nursing Research, published online 9 December 2010, DOI: 10.1177/0193945910389623.
56. Tommet, P. A. (2003). Nurse-parent dialogue: Illuminating the evolving pattern of families with children who are medically fragile. Nursing Science Quarterly, 16, 239-246.
57. Wang, K. W., & Barnard, A. (2004). Technology-dependent children and their families: A review. Journal of Advanced Nursing, 45, 36-46.
58. Weiss, S. J., & Chen, J. L. (2002). Factors influencing maternal mental health and family functioning during the low birthweight infant's first year of life. Journal of Pediatric Nursing, 17, 114-125.
59. Zauszniewski, J., & Wykle, M. (1994). Racial differences in self-assessed health problems, depressive cognitions, and learned resourcefulness. Journal of the National Black Nurses Association, 7, 3-14.