A Comprehensive Study of the Distressing Experiences and Support Needs of Parents of Children with Intractable Cancer
OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they regarded as necessary. METHODS: A multi-center questionnaire survey was conducted that included 135 bereaved parents of patients with pediatric cancer in Japan. RESULTS: The top five distressing experiences shared by over half of the bereaved parents were: 'Realize that the child's disease was getting worse' (96.7%), 'Witness the child's suffering' (96.7%), 'Make many decisions on the basis that the child will die in the not-so-distant future' (83.6%), 'Feel anxious and nervous about the child's acute deterioration' (82.0%) and 'Realize that there was nothing that I could do for the child' (78.7%). The top five support regarded as necessary were: 'Visit the room and speak to the sick child every day' (90.2%), 'Provide up-to-date information' (80.3%), 'Sufficiently explain the disadvantages of each treatment option' (80.3%), 'Show a never-give-up attitude until the end' (78.7%) and 'Make arrangements to allow the sick child to spend time with his/her siblings' (73.8%). CONCLUSIONS: This study identified the common distressing experiences of parents and the support regarded as necessary by them. To provide efficient support with limited manpower in pediatric setting, healthcare professionals should recognize these tasks as high priorities when engage parents of intractable pediatric cancer patients.
2014-09
Yoshida S; Amano K; Ohta H; Kusuki S; Morita T; Ogata A; Hirai K
Japanese Journal Of Clinical Oncology
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).
Journal Article
<a href="http://doi.org/10.1093/jjco/hyu140" target="_blank" rel="noreferrer">10.1093/jjco/hyu140</a>
Usefulness of the leaflet-based intervention for family members of terminally ill cancer patients with delirium
BACKGROUND AND OBJECTIVE: Delirium in terminally ill cancer patients causes considerable distress to family members. The aim was to determine the family-perceived usefulness of a leaflet about delirium in terminally ill cancer patients. METHODS: Family members received a leaflet about delirium designed for this study as a part of routine practice. Questionnaires were mailed to bereaved family members of cancer patients recruited from three palliative care units, one hospital palliative care team, and three specialized home care teams in Japan. RESULTS: Among 235 family members, 16 questionnaires were returned as undeliverable, and responses were obtained from 169 bereaved family members (response rate 77%, 169/219). Of these, 22 were excluded because of missing data and 34 families reported they did not recognize that the patient had delirium, and thus 113 responses were finally analyzed. As a whole, 81% of the family members reported that the leaflet was "very useful" or "useful." Many respondents noted that the leaflet "helped them understand the dying process" (84%), "helped them identify what they could do for the patient" (80%), "helped them understand the patient's physical condition" (76%), and "was useful in preparing for the patient's death" (72%). CONCLUSIONS: The leaflet about delirium was evaluated as useful for family members. This leaflet could help family members cope with a difficult situation by facilitating accurate understanding of the situation and by helping family members understand what they could do for the patient. More comprehensive intervention programs should be developed and tested in the future.
Otani H; Morita T; Uno S; Yamamoto R; Hirose H; Matsubara T; Takigawa C; Sasaki K
Journal Of Palliative Medicine
2013
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/10.1089/jpm.2012.0401" target="_blank" rel="noreferrer noopener">10.1089/jpm.2012.0401</a>
International comparison study on the primary concerns of terminally ill cancer patients in short-term life review interviews among Japanese, Koreans, and Americans
Female; Humans; Male; United States; Aged; Middle Aged; Cross-Cultural Comparison; Life Change Events; Hospices; Spirituality; Religion and Psychology; Psychometrics; Japan; 80 and over; Psychological; Personality Inventory/statistics & numerical data; Republic of Korea; Interview; Terminal Care/psychology; Mental Recall; Neoplasms/ethnology/psychology; Social Values/ethnology
OBJECTIVE: The aim of this study was to investigate the primary concerns of terminally ill cancer patients in a Short-Term Life Review among Japanese, Koreans, and Americans to develop intervention programs to be tailored to patients in other countries. METHOD: Twenty Japanese, 16 Korean, and 7 American terminally ill cancer patients who were in the hospice wards of general Christian hospitals in each country participated in this study. Medical staff members (nurses, social workers, clinical psychologists) performed Short-Term Life Review Interviews with each patient. Patients reviewed their lives in the first session, the interviewers made simple albums for each patient in the week following the first session, and patients and interviewers then confirmed the contents of the album. The treatment period was 1 week. Measurement instruments included the Functional Assessment Chronic Illness Therapy-Spiritual (FACIT-Sp) and the Hospital Anxiety and Depression Scale (HADS). The contents of each interview session were transcribed, and correspondence analysis and a significance test were conducted on these data to select characteristic words or phrases. RESULTS: Using the FACIT-Sp scores, the following concerns were chosen, in descending order of frequency. In Japan, primary concerns consisted of such ideas as "good human relationships and transcendence," "achievements and satisfaction," "good memories and important things," and "bitter memories." In Korea, "religious life," "right behavior for living," "strong consideration for children and will," and "life for living" were primary concerns. In the United States, "love, pride, will to children," "good, sweet memories," and "regret and a feeling of loss" were primary concerns. SIGNIFICANCE OF RESULTS: We clarify the differences among the primary concerns from the Short-Term Life Reviews, arguing that we can improve the spiritual well-being of terminally ill cancer patients by focusing on the primary concerns within each country.
2009
Ando M; Morita T; Ahn SH; Marquez-Wong F; Ide S
Palliative & Supportive Care
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/10.1017/S1478951509990289" target="_blank" rel="noreferrer">10.1017/S1478951509990289</a>
Effects of high dose opioids and sedatives on survival in terminally ill cancer patients
Female; Humans; Male; Palliative Care; Aged; Middle Aged; Survival Analysis; Inpatients; Forecasting; Dose-Response Relationship; Drug; Neoplasms/drug therapy; Critical Illness/therapy; Hypnotics and Sedatives/administration & dosage/adverse effects/therapeutic use; Narcotics/administration & dosage/adverse effects/therapeutic use
Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on patient survival, a re-analysis of the prospectively collected data was performed on 209 hospice inpatients. Patient characteristics and clinical symptoms were prospectively recorded, and information about the use of opioids and sedatives in the last two days was collected by a chart review. Opioids were prescribed in 82% of the patients, with a median dose of 80 mg oral morphine equivalent (OME)/48 hours. Sixty percent received some sedative medications, mainly haloperidol (43% of total sample, 7.5 mg/48 hours), midazolam (23%, 23mg/48 hours), and hydroxyzine (15%, 50 mg/48 hours). There were no significant differences in survival between the patients who received different doses of opioids ( or =600 mg OME/48 hours) and of benzodiazepines (0, 1--59, and > or =60 mg parental midazolam equivalent/48 hours). Also, the survival of patients with haloperidol, hydroxyzine, and other sedative medications did not differ from those without. Furthermore, an addition of use of opioids and sedatives in the final 48 hours into the multiple regression model for survival prediction achieved no significant increase in predictability. In conclusion, opioids and sedatives used for symptom control in the last days are not associated with patient survival. They are safe and useful medications to palliate severe distress in the terminal stage of cancer when administered with a low initial dosage and adequate titration.
2001
Morita T; Tsunoda J; Inoue S; Chihara S
Journal Of Pain And Symptom Management
2001
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/10.1016/s0885-3924(01)00258-5" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00258-5</a>