Physical Symptoms of Children Receiving Pediatric Hospice Care at Home During the Last Week of Life
Purpose/Objectives: To identify symptoms of greatest parental concern on the last day and during the last week of their children's lives, the five most common symptoms of parental concern, and symptom-management strategies used during the last week of the children's lives.
Research Approach: Descriptive, exploratory, and retrospective.
Setting: A pediatric hospice program in St. Louis, MO.
Participants: Convenience sampling of 28 bereaved parents.
Methodologic Approach: The Krippendorff method for semantical content analysis of data collected from semistructured telephone interviews with parents.
Main Research Variables: Parents' perceptions of their children's symptoms and symptom-management strategies.
Findings: On the last day of life, change in the children's breathing was the most frequent symptom of concern. During the last week of life, loss of motor function was the most frequent symptom of concern. Physical comfort actions and use of pharmaceutical agents were the strategies perceived as most helpful in managing symptoms.
Conclusions: The study is the first to document parents' perceptions of their children's symptoms and of symptom-management strategies during the last week of life while receiving care in the home from staff of the pediatric hospice program.
Interpretation: Symptoms experienced by dying children during the last week of life and symptom-management strategies used by pediatric hospice programs to support dying children and their families have not been well described. Additional research is warranted to further identify pediatric symptoms at the end of life and effective symptom-management strategies.
Bartell, A. S., & Kissane, D. W. (2005). Issues in pediatric palliative care: Understanding families. <i>Journal of Palliative Care, 21</i>(3), 165-172.
Bruera, E. (1993). Research in symptoms other than pain. In D. Doyle, G. Hanks, & N. MacDonald (Eds), <i>Oxford textbook of palliative medicine</i> (2nd ed., pp. 179-186). Oxford: Oxford University Press.
Carter, B. S., Hawenstein, M., Gilmer, M. J., Throop, P., France, D., Whitlock, J. A. (2004). Circumstances surrounding the deaths of hospitalized children, opportunities for pediatric palliative care. <i>Pediatrics, 114</i>(3), 361-366.
Collins, J. J., Stevens, M. M., & Cousens, P. (1998). Home care for the dying child: A parent's perspective. <i>Australian Family Physician, 27</i>(7), 610-614.
Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2002). Family perspectives on the quality of pediatric palliative care. <i>Archives of Pediatric and Adolescent Medicine, 156</i>(1), 14-19.
Cooley, C., Adeodu, S., Aldred, H., Beesley, S., Leung, A., & Thacker, L. (2000). Pediatric palliative care: A lack of research-based evidence. <i>International Journal of Palliative Nursing, 6</i>(7), 346-351.
Corr, C. A., & Corr, D. M. (1985). Pediatric hospice care. <i>Pediatrics, 76</i>(5), 774-780.
Cramer, L. D., McCorkle, R., Cherlin, E., Johnson-Hurzler, R., & Bradley, E. H. (2003). Nurses' attitudes and practice related to hospice care. <i>Journal of Nursing Scholarship, 35</i>(3), 249-255.
Davies, B., Collins, J. J., Steele, R., Cook, K., Distler, V., & Breener, A. (2007). Parents' and childrens' perspectives of a children's bereavement program. <i>Journal of Palliative Care, 23</i>(1), 14-23.
Davies, D. E. (2005). Talking about death with dying children. <i>New England Journal of Medicine, 352</i>(1), 91-92.
Drake, R., Frost, J., & Collins, J. J. (2003). The symptoms of dying children. <i>Journal of Pain and Symptom Management, 26</i>(1), 594-603.
Field, M. J., & Behrman, R. E. (Eds.). (2003). <i>When children die: Improving palliative and end-of-life care for children and their families.</i> Washington, DC: National Academies Press.
Freeman, K., O'Dell, C., & Meola, C. (2004). Childhood brain tumors: Parental concerns and stressors by phase of illness. <i>Journal of Pediatric Oncology Nursing, 21</i>(2), 87-97.
Goldman, A., & Chir, B. (2000). Symptoms and suffering at the end of life in children with cancer [Letter to the editor]. <i>New England Journal of Medicine, 342</i>(26), 1998.
Hain, R. D. W., Patel, N., Crabtree, S., & Pinkerton, R. (1995). Respiratory symptoms in children dying from malignant disease. <i>Palliative Medicine, 9</i>(3), 201-206.
Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S. L., Church, C., et al. (2005). End-of-life care preferences of pediatric patients with cancer. <i>Journal of Clinical Oncology, 23</i>(36), 9146-9154.
Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by pediatric patients with cancer. <i>Quality of Life Research, 13</i>(4), 761-772.
Hinds, P. S., Oakes, L., Furman, W., Foppiano, P., Olson, M. S., Quargnenti, A., et al. (1997). Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. <i>Oncology Nursing Forum, 24</i>(9), 1523-1528.
Hinds, P. S., Oakes, L., Furman, W., Quargnenti, A., Olson, M. S., Foppiano, P., et al. (2001). End-of-life decision made by adolescents, parents, and healthcare providers in pediatric oncology. <i>Cancer Nursing, 24</i>(2), 122-134.
Hinds, P. S., Oakes, L., Quargnenti, A., Furman, W., Bowman, L., Gilger, E., et al. (2000). An international feasibility study of parental decision making in pediatric oncology. <i>Oncology Nursing Forum, 27</i>(8), 1233-1243.
Hughes, A., Partridge, J. C., Davies, B., Cooper, B. A., Kramer, R. F., Amidi-Niouri, A., et al. (2005). Staff perceptions of barriers to pediatric end-of-life care in intensive care versus nonintensive care settings. <i>Pediatric Research, 58</i>(2), 404.
Hunt, A. M. (1990). A survey of signs, symptoms, and symptom control in 30 terminally ill children. <i>Developmental Medicine and Child Neurology, 32</i>(4), 341-346.
Institute of Medicine. (2003). When children die: <i>Improving palliative and end-of-life care for children and their families.</i> Washington, DC: National Academies Press.
James, L., & Johnson, B. (1997). The needs of parents of pediatric oncology patients during the palliative care phase. <i>Journal of Pediatric Oncology, 14</i>(2), 83-95.
Kane, J. R., Barber, R. G., Jordan, M., Tichenor, K. T., & Camp, K. (2000). Supportive/palliative care of children suffering from life-threatening and terminal illness. <i>American Journal of Hospice and Palliative Care, 17</i>(3), 165-172.
Kane, J. R., Hellsten, M. B., & Coldsmith, A. (2004). Human suffering: The need for relationship based research in pediatric end-of-life care. <i>Journal of Pediatric Oncology, 21</i>(3), 180-185.
Kane, J. R., & Primomo, M. (2001). Alleviating the suffering of seriously ill children. <i>American Journal of Hospice and Palliative Care, 18</i>(3), 161-169.
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Bjork, O., Steineck, G., & Henter, J. I. (2005). Care-related distress: A nationwide survey of parents who lost their child to cancer. <i>Journal of Clinical Oncology, 23</i>(36), 9162-9171.
Krippendorff, K. (1980). <i>Content analysis: An introduction to its methodology.</i> Newbury Park, CA: Sage.
Krueger, K. (2003). Hospice meeting needs better than ever. <i>Inside Case Management, 10</i>(11), 5-7.
Lavrakas, P. (1987). <i>Telephone survey methods: Sampling, selection, and supervision.</i> Newbury Park, CA: Sage.
Mack, J. W., Hilden, J. M., Watterson, J., Moore, C., Turner, B., Grier, H. E., et al. (2005). Parent and physician perspectives on quality of care at the end of life in children with cancer. <i>Journal of Clinical Oncology, 23</i>(36), 9155-9161.
McMillan, S. C. (1996). Pain and pain relief experienced by hospice patients with cancer. <i>Cancer Nursing, 19</i>(4), 298-307.
McMillan, S. E., & Small, B. (2002). Symptom distress and quality of life in patients with cancer and newly admitted to hospice home care. <i>Oncology Nursing Forum, 29</i>(10), 1421-1426.
Meyer, E. C., Burns, J. P., Griffith, J. L., & Troug, R. D. (2002). Parental perspectives on end-of-life care in the pediatric intensive care unit. <i>Critical Care Medicine, 30</i>(1), 226-231.
Nuss, S. L., Hinds, P. S., & LaFond, D. A. (2005). Collaborative clinical research on end-of-life care in pediatric oncology. <i>Seminars in Oncology Nursing, 21</i>(2), 125-134.
Petrosino, B. M. (1985). Characteristics of hospice patients, primary caregivers, and nursing care problems: Foundation for future research. <i>Hospice Journal, 1</i>(1), 3-19.
Stephenson, J. (2000). Palliative and hospice care needed for children with life-threatening conditions. <i>JAMA, 284</i>(19), 2437-2438.
Troug, R. D., Meyer, E. C., & Burns, J. P.(2006). Toward interventions to improve end-of-life care in the pediatric intensive care unit. <i>Critical Care Medicine, 34</i>(11), S373-S379.
Vickers, J. L., & Carlisle, C. (2000). Choices and control: Parental experiences in pediatric terminal care. <i>Journal of Pediatric Oncology Nursing, 17</i>(1), 12-21.
Wolfe, J, Friebert, S., & Hilden, J. (2002). Caring for children with advanced cancer integrating palliative care. <i>Pediatric Clinics of North America, 49</i>(5), 1043-1062.
Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salem- Schatz, S., et al. (2000). Symptoms and suffering at the end of life in children with cancer. <i>New England of Journal of Medicine, 342</i>(5), 326-333.