Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life
Adaptation; Caregivers/px [psychology]; Cultural Characteristics; Neoplasms/px [psychology]; Patients/px [psychology]; Survivors/px [psychology]; Adolescent; Adult; Child; Humans; Infant; Middle Aged; Newborn; Preschool; Psychological
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.
Gray WN; Szulczewski LJ; Regan SMP; Williams JA; Pai AL
Journal Of Pediatric Oncology Nursing
2014
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/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">10.1177/1043454214529022</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>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>