Human suffering: the need for relationship-based research in pediatric end-of-life care
Interpersonal Relations; Neoplasms/co [complications]; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Psychology; Stress; Terminal Care; Adaptation; Child; Health Services Needs And Demand; Humans; Psychological; Psychological/et [etiology]; Psychological/nu [nursing]; Psychological/px [psychology]; Quality Of Life; Sick Role; Social Support; Spirituality; Stress; Terminal Care/og [organization & Administration]; Terminal Care/px [psychology]
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being. [References: 29]
Kane JR; Hellsten MB; Coldsmith A
Journal Of Pediatric Oncology Nursing
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</a>
End-Of-Life Research as a Priority for Pediatric Oncology
Neoplasms; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Terminal Care/og [organization & Administration]; Adaptation; Attitude To Death; Child; Decision Making; Family/px [psychology]; Grief; Health Priorities/og [organization & Administration]; Humans; Needs Assessment; Neoplasms/nu [nursing]; Neoplasms/px [psychology]; Psychological; Psychology; Social Support; Survivors/px [psychology]; Terminal Care/px [psychology]
Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors. [References: 26]
Hinds PS; Pritchard M; Harper J
Journal Of Pediatric Oncology Nursing
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1043454204264386" target="_blank" rel="noreferrer noopener">10.1177/1043454204264386</a>