Purpose : This study examined characteristics of, problems of and services provided to hospice recipients and their family members at a home hospice organization. Methods : The subjects were 113 people who were discharged from one free-standing home hospice organization between November, 1994 and lune, 1999. Since the opening of the organization in November of 1994, it has provided hospice services at patients' homes with no charge. Data were collected from those subjects' records. Results : The average age of the subjects was 57.1 years; those aged 60 and over were 54%. Spouse was the most frequent(50.9%) primary caregiver followed by daughter-in-law and daughter. All the subjects were diagnosed as having cancer. Of those 41 subjects who did not know their terminal stage in the beginning, 31 subjects came to know their states. Of the subjects, 72.7% were referred from their physicians. On the average, the service duration and the number of home visits were 6.8 weeks and 7.2 times, respectively. Pain was the most prevalent problem of the subjects(89.4%). Medication management was the most frequently provided service followed by psychological supports. The reasons for discharge were death(88.5%) and refusal(8%). Home was the most frequent place of death(60%). Conclusion Home hospice service providers should be trained particularly in working with elders and in managing cancer pain. People need to be referred at an appropriate time for achieving goals of hospice. Community recognition of hospice services needs to be promoted.
Purpose: The purpose of this study was to identify the needs of hospice care in families of the hospitalized patients with terminal cancer. Method: The data were collected from April to July, 2008. The participants were 100 family caregivers of hospitalized terminal patients with cancer recruited from two general hospitals in 2 cities in Korea. Needs of hospice care were measured using the 'Needs Assessment Instrument for Hospice Care in Families of the Patients with Cancer'. Results: The mean of needs score was 76.6, which meant degree of the needs was very high. Among the categories of the needs, the mean of category 'emotional care' was the highest. There were significant differences in the needs of hospice care according to sex and type of present therapy. Conclusion: Health care providers in hospital and hospice facilities must assess the needs of families as well as the patients in order to meet their specific needs. Additionally, they need to have deeper understanding of the need of emotional care and to apply emotional care to hopice patients and their families.
Kim, Yu-Jin;Lee, Choon-Sub;Lee, Ju-Ri;Lee, Jung-Ho;Hong, Young-Hwa;Lee, Tae-Gyu;Moon, Do-Ho
Journal of Hospice and Palliative Care
/
v.10
no.2
/
pp.78-84
/
2007
Purpose: The prevalence of lung cancer is increasing continuously these days. We studied clinical characters of the terminal lung cancer patients who had died in hospice units and our study is the basic report for efficient hospice and palliative care to the lung cancer patients. Methods: We retrospectively reviewed the medical records of 129 terminal lung cancer patients who had died in Sam Anyang Hospice Unit from March 2003 to December 2006. The survival days during the hospice and palliative care were analyzed using Kaplan-Meier method of SPSS 13.0. Results: There were 93 males (72%) and 36 females (28%), and median age of patients was 68 years (range $37{\sim}93$). Eighty two patients (64%) took analgesics, the others 47 (36%) not. The most prevalent reason for admission was dyspnea (47 patients, 36%) and it was different from the terminally ill cancer patients being hospitalized because of pain. And the most common symptom was general weakness (103 patients, 80%). One hundred twenty of the paitents (93%) were administered opioid analgesics, and IV morphine shots were mostly used (103 patients, 80%). Sedation was used in 87 patients (67%), and midazolam was mostly used (68 patients, 53%). The median survival in hospice and palliative care was 35 days and the median hospitalization was 24 days. Conclusion: It is very important to manage dyspnea in terminal lung cancer patients. The length of hospice and palliative care for the terminal lung cancer patients is still short. Therefore continuous education and promotion of hospice and palliative care is needed for an effective care for the patients, their families and doctors.
Purpose: The purpose of this study was to test the reliability and validity of an instrument to measure suffering of family of patients with terminal cancer. Methods: This research was a methodological study processed as follows: 1) The preliminary 32 items were developed based a conceptual framework of suffering for patients with cancer. 2) The content was validated by an expert panel (n=24) and the family of patients with terminal cancers (n=33). 3) The instrument was validated by survey (n=92). Finally, 29 items were selected in developing final version of the scale. Results: Seven factors were extracted through factor analysis: 'economical distress', 'loss of meaning in life', 'feeling of social isolation', 'emotional distress', 'burnout', 'guilty feeling', and 'physical discomfort'. These factors explained 66.94% of the total variance. Cronbach's alpha and Guttman Split-half coefficient of the 29 items were .93 and .92. respectively. Conclusion: This scale identified as a valid and reliable tool with a high degree of reliability and validity. It can be effectively utilized to assess the degree of suffering of family in palliative care settings.
Purpose: This study aimed to understand the mechanisms of decision regret and stress of family surrogates' end-of-life decision making using an exploratory path model. In particular, the research identified the direct effects of perceptions of uncertainty and effective decisions on decision regret and stress, and examined the indirect effects of being informed, having clear values, and being supported for decision regret and the stress of end-of-life decision making through the mediating variables of perceptions of uncertainty and effective decisions. Methods: Data were collected from 102 family surrogates who had participated in end-of-life decision making for patients with terminal cancer in a tertiary hospital. Results: Perception of effective decisions was a significant direct predictor of decision regret, and uncertainty was a significant predictor of stress among the participants. Being informed, having clear values, and being supported had a significant indirect influence on decision regret through the perception of effective decisions among family surrogates. However, only having clear values had a significant indirect influence on stress through the perception of uncertainty. The model explained 63.0% of decision regret and 20.0% of stress among the participants and showed a good fit with the data, ${\chi}^2=12.40$ (df=8, p=.134), TLI=.97, and RMSEA=.07. Conclusion: Nurses can support family surrogates in end-of-life decision-making processes to decrease their decision regret by providing information about end-of-life care choices, clarifying personal values, and supporting the decision-making process, and to relieve their stress by facilitating the clarification of personal values.
Most terminally ill cancer patients experience various physical and psychological symptoms during their illness. In addition to pain, they commonly suffer from fatigue, anorexia-cachexia syndrome, nausea, vomiting and dyspnea. In this paper, I reviewed some of the common non-pain symptoms in terminally ill cancer patients, based on the National Comprehensive Cancer Network (NCCN) guidelines to better understand and treat cancer patients. Cancer-related fatigue (CRF) is a common symptom in terminally ill cancer patients. There are reversible causes of fatigue, which include anemia, sleep disturbance, malnutrition, pain, depression and anxiety, medical comorbidities, hyperthyroidism and hypogonadism. Energy conservation and education are recommended as central management for CRF. Corticosteroid and psychostimulants can be used as well. The anorexia and cachexia syndrome has reversible causes and should be managed. It includes stomatitis, constipation and uncontrolled severe symptoms such as pain or dyspnea, delirium, nausea/vomiting, depression and gastroparesis. To manage the syndrome, it is important to provide emotional support and inform the patient and family of the natural history of the disease. Megesteol acetate, dronabinol and corticosteroid can be helpful. Nausea and vomiting will occur by potentially reversible causes including drug consumption, uremia, infection, anxiety, constipation, gastric irritation and proximal gastrointestinal obstruction. Metoclopramide, haloperidol, olanzapine and ondansetron can be used to manage nausea and vomiting. Dyspnea is common even in terminally ill cancer patients without lung disease. Opioids are effective for symptomatic management of dyspnea. To improve the quality of life for terminally ill cancer patients, we should try to ameliorate these symptoms by paying more attention to patients and understanding of management principles.
Purpose : Seoul National University Hospital developed a group counseling program for the terminal cancer patients and their family members. This program consists of each of doctor, nutritionist, nurse, pharmacist, and social worker to provide them with the information and to enhance their ability to cope with terminal cancer. This research aims to introduce this new program per se, and to appreciate its validity and applicability to the terminal cancer patients and their family members by analyzing the concerns and specific questions of the participants. Methods : The methodological approach employed in this research is 1996 content analysis of the group counseling reports, and interview of the 312 participants. The analysis includes the general characteristics of the subjects, family relationship to the patients, times of attendance to the group session, source of information to the program. Results : The participants consist of 261 family members(84%) and 51 patients(16%). Majority responded to the program with a single-attendance. Diagnosis are mainly lung cancer, stomach cancer, liver cancer. The ratio of participants by family members is decreased in the order of spouse, children, daughter-in-law, brothers and sisters, and parents. The source of information to the program is largely through medical staff(69%) as compared with posters in the hospital (26%). The participants are interested primarily in the medical information. Their interests are various, such as pain control, patient care, nutrition, psychosocial problem and etc. Conclusion : This program is characterized largely as a family-supporting program which primarily offers information for terminal cancer. This program is a sort of a hospice program, which maximizes the present quality of living of the terminal cancer patients as long as life continues by encouraging them to live with terminal cancer. Thus, this group program can be employed as an active support network for the patients and their family. In order to develop comprehensive care-giving services, it is required to have 24-hour telephone service, hospice facilities, home care service, and communication between the referral hospitals and the primary care physicians, in particular. Such a development of services is the ultimate goal for improving care. But the immediate goal of the program is to make possible better education for the patients and their family to live with terminal cancer.
Journal of the Korea Academia-Industrial cooperation Society
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v.13
no.4
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pp.1706-1713
/
2012
The purpose of this study was to analyze the need for child hospice care in families of children with cancer for outpatient. The participants were 83 parents of children with cancer. This survey was conducted from January 2011 to March 2011 at four hospitals in Daegu. Data were collected through self-report questionnaires and analyzed by descriptive statistics, t-test and ANOVA using the SPSS/WIN Program. Needs for hospice care for the participants were high. The need for "emotional care of children" showed the highest, "control of secondary physical problems", "acceptance of the family's difficulty", "management for terminal physical symptoms", "spiritual care for preparing for death". With respect on the demographic characteristics of the participants, there were statistically significant differences in hospice care needs, among to the religion, sibling, relatives, whether of the cancer. The above findings indicate that needs for hospice care for the participants were high about emotional care, especially as it is related to children's anxiety. Therefore hospice care, based on emotional part, should be provided systematic hospice care with specialized multidisciplinary child hospice care team, child hospice center.
Purpose: The purpose of this study was to analyze the need for child hospice care programs in families of children with cancer. Methods: The survey of 104 families who were taking care of children with cancer was conducted. This survey was conducted from February 2004 to July 2004 at two general hospitals in Seoul. The data were collected through a self-reporting questionnaire of 22 items. The items were classified into five areas by factor analysis to identify the construct validity. The reliability of the tool was established by Cronbach's alpha as .94 and the data collected were analyzed by descriptive statistics, t-test and ANOVA. Results: 1) The degree of need for hospice care of the subjects showed a high average of 3.40 (${\pm}3.8$). The need for 'emotional care of children' showed the highest mean (M=3.55), 'management of terminal physical symptoms'(M=3.49), 'control of secondary physical problems' (M=3.41), 'acceptance of the family's difficulty' (M=3.20), 'spiritual care for preparing for death'(M=3.17), respectively. 2) With respect to the demographic characteristics of the subjects, there were statistically significant differences in hospice care needs, according to the child's mother's age (F==4.980, P=.009), whether or not there were cancer patients among their siblings or relatives (t=2.423, P=.017). Conclusion: The family of children with cancer have a heavy burden of ambivalence, especially in relieving the anxiety and fear of their children, communicating about death, and managing physical symptoms. Child hospice care must be provided considering the needs of families of children with cancer. Thus popular needs as well as hospice nurses' higher concern and support for hospice care of children require further education and program development to meet the current demands.
Kim, Yun Hee;Lee, Seung Hun;Lim, Ho Seop;Choi, Young Jin;Kim, Yun Jin;Lee, Sang Yeoup;Lee, Jeong Gyu;Jeong, Dong Wook;Yu, Kyoung Hwa
Journal of Hospice and Palliative Care
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v.18
no.4
/
pp.314-321
/
2015
Purpose: It is well known that a terminal cancer condition affects not only patient themselves but their family members because the patients experience a variety of symptoms. This study was aimed to investigate modifiable factors that influence family caregivers' quality of life, depression, and anxiety. Methods: From January 2015 through May 2015, a survey was conducted with 61 family caregivers of hospice patients who were hospitalized in two university hospitals and one municipal hospital in Busan. The questionnaire was consisted of characteristics of family caregivers and patients, the Korean version of the Caregiver Quality of Life Index-Cancer (CQOLC-K), Beck's Depression Inventory II (BDI-II), Beck's Anxiety Inventory (BAI), and patient's symptom controlling scores rated by family caregivers. Results: Family caregivers' depression was associated with religion. Quality of life and depression of family caregivers were also influenced by monthly household income. Patient age was inversely related to family caregiver's quality of life ($r_s=-0.259$, P=0.043). Family caregivers' quality of life was associated with patient's anxiety (r=0.443, P=0.001). Family caregivers' depression was affected by patient's constipation (r=0.276, P=0.046), anxiety (r=0.508, P<0.001), and daytime drowsiness (r=0.377, P=0.005). And family caregivers' anxiety was influenced by patients' sleep disturbance (r=0.276, P=0.046), depression (r=0.297, P=0.031), and anxiety (r=0.357, P=0.009). Conclusion: According to our findings, family caregivers had higher quality of life and less depression and anxiety when symptoms in hospice patients were well controlled.
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