References

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References
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EMPIRICAL LITERATURE REVIEWS:
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Nursing, 16, 110-119.
Bomalaski, M. D., Teague, J. L., & Brooks, B. (1995). The long-term impact of
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Emotional and Behavioral Disorders, 10(2), 116-125.
Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2002). Family
perspectives on the quality of pediatric palliative care. Pediatrics and Adolescent
Medicine, 156(1), 14-19.
Coyne, I. T. (1997). Chronic illness: the importance of support for families caring
for a child with cystic fibrosis. Journal of Clinical Nursing, 6(2), 121-129.
Crain, N., Dalton, H., & Slonim, A. (2001). End-of-life care for children: Bridging
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Davies, Betty & Connaughty, Sharon (2002). Pediatric end-of-life care: Lessons
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Fang, C. Y., Manne, S. L., & Pape, S. J. (2001). Functional impairment, marital
quality, and patient psychological distress as predictors of psychological distress
among cancer patients' spouses. Health Psychology, 20(6), 452-457.
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MCN, The American Journal of Maternal/Child Nursing, 23(1), 52.
Greeff, A. P. (2000). Characteristics of families that function well. Journal of Family
Issues, 21(8), 948-963.
Heymann, S. J., Earle, A., & Egleston, B. (1996). Parental availability for the care of
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341-349.
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perspectives on end-of-life care in the pediatric intensive care unit. Critical Care
Medicine, 30(1), 226-231.
Middlewood, S., Gardner, G., & Gardner, A. (2001). Dying in hospital: Medical
failure of natural outcome? Journal of Pain and Symptom Management, 22(6), 10351041.
Miettinen, T., Alaviuhkola, H., & Pietila, A. (2001). The contribution of “good”
palliative care to quality of life in dying patients: Family members’ perceptions.
Journal of Family Nursing, 7(3), 261-280.
Mullins, L. L., Chaney, J. M., Kiser, K. L., Nielson, B. A., & Pace, T. M. (1998). The
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responses of graduate students in education. Children’s Health Care, 27(3), 205-214.
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Family Nursing, 7(3), 281-299.
Ratcliffe, C. E., Harrigan, R. C., Haley, J., Tse, A., & Olson, T. (2002). Stress in
families with medically fragile children. Issues in Comprehensive Pediatric Nursing,
25, 167-188.
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knowledge of options at the end of life: Ignorance in the face of death. JAMA,
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Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., &
Tulsky, J. A. (2000). Factors considered important at the end of life by patients,
family, physicians, and other care providers. JAMA, 284(19), 2476-2482.
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siblings and mothers. Maternal-Child Nursing Journal, 21(4), 111-121.
Williamson, G. M., Walters, A. S., & Shaffer, D. R. (2002). Caregiver models of self
and others, coping, and depression: Predictors of depression in children with
chronic pain. Health Psychology, 21(4), 405-410.
Wissow, L. S., Hutton, N., & Kass, N. (2001). Preliminary study of a values-history
advance directive interview in a pediatric HIV clinic. Journal of Clinical Ethics,
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Wolfe, J. Klar, N., Grier, H. E., Duncan, J., Salem-Schatz, S., Emanuel, E. J., &
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Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salemschatz, S.,
Emanuel, E. J., & Weeks, J. C. (2000). Symptoms and suffering at the end of life in
children with cancer. The New England Journal of Medicine, 342(5), 326-333.
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THEORETICAL LITERATURE:
Adams, M. A. (1978). Helping the parents of children with malignancy. The Journal
of Pediatrics, 93(5), 734-738.
Burke, P., & Elliott, M. (1999). Depression in pediatric chronic illness: A diathesisstress model. Psychosomatics, 40(1), 5-17.
Burke, S. O., Kauffman, E., Harrison, M. B., & Wiskin, N. (1999). Assessment of
stressors in families with a child who has a chronic condition. American Journal of
Maternal Child Nursing, 24(2), 98-106.
Chaffee, S. (2001). Pediatric palliative care. Palliative Care, 28(2), 365-390.
Davies, B., Brenner, P., Orloff, S., Sumner, L., & Worden, W. (2002). Addressing
spirituality in pediatric hospice and palliative care. Journal of Palliative Care, 18(1),
59-67.
Degeneffe, Charles E. (2001). Family caregiving and traumatic brain injury. Health
& Social Work, 26(4), 257-268.
Enck, R. E. (2001). Pediatric pain control. American Journal of Hospice & Palliative
Care, 18(6), 365-366.
Fielding, D., & Duff, A. (1999). Compliance with treatment protocols: interventions
for children with chronic illness. Archives of Disease in Childhood, 80(2), 196-200.
Geist, R. A. (1979). Onset of chronic illness in children and adolescents:
Psychotherapeutic and consultative intervention. American Orthopsychiatric
Association, 49(1), 4-23.
Goldman, A. (2001). Importance of palliative care for children is being increasingly
recognized. Bmj, 322, 234.
Haas, B. K. (1999). Clarification and integration of similar quality of life concepts.
Image: Journal of Nursing Scholarship, 31(3), 215-220.
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Heijmans, M. J. W. M. (1998). Coping and adaptive outcome in chronic fatigue
syndrome: Importance of illness cognitions. Journal of Psychosomatic Research,
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Houwelingen, J. C., & Roos, R. A. C. (2002). Living with Huntington’s Disease:
Illness perceptions, coping mechanisms, and spouses’ quality of life. International
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children. Journal of Hospice & Palliative Care, 18(3), 161-169.
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Management, 21(3), 243-249.
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Pediatrics, 21(1), 58-69.
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the family: A critical review. Rehabilitation Psychology, 44(1), 6-35.
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MEASUREMENT LITERATURE:
Eiser, C. (1997). Children's quality of life measures. Archives of Disease in
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Eiser, C., Vance, Y. H., Seamark, D. (2000). The development of a theoretically
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report. Child: Care, Health, and Development, 26(6), 445-456.
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with chronic illness. Archives of Disease in Childhood, 84(3), 205-211.
Gilbody, S. M., House, A. O., & Sheldon, T. (2002). Routine administration of health
related quality of life (HRQOL) and needs assessment instruments to improve
psychological outcome – a systematic review. Psychological Medicine, 32(8), 13451356.
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multidimensional life satisfaction scale for children. Psychological Assessment, 6(2),
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Juniper, E. F., Howland, W. C., Roberts, N. B., Thompson, A. K., King, D. R., &
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Psychological Assessment, 2(2), 149-155.
Rawlins, P. S., Rawlins, T. D., & Horne, M. (1990). Development of the family needs
assessment tool. Western Journal of Nursing Research, 12(2), 201-214.
Tucker, C. L., Slifer, K. J., & Dahlquist, L. M. (2001). Reliability and validity of the
brief behavioral distress scale: A measure of children’s distress during invasive
medical procedures. Journal of Pediatric Psychology, 26(8), 513-523.
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