Family caregiver's experiences in caring for a patient with terminal cancer at home in Japan

2007 ◽  
Vol 5 (4) ◽  
pp. 389-395 ◽  
Author(s):  
Tomomi Sano ◽  
Etsuko Maeyama ◽  
Masako Kawa ◽  
Yuki Shirai ◽  
Mitsunori Miyashita ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Family Members ◽  
Primary Caregivers ◽  
Palliative Care Service ◽  
Terminal Cancer ◽  
Time Of Death ◽  
The Family ◽  
Personal Qualities ◽  
At Home

ABSTRACTObjectives:The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.Methods:One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).Results:Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.Significance of results:Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.

Late Referrals to Specialized Palliative Care Service in Japan

2005 ◽  
Vol 23 (12) ◽  
pp. 2637-2644 ◽  
Author(s):  
Tatsuya Morita ◽  
Tatsuo Akechi ◽  
Masayuki Ikenaga ◽  
Yoshiyuki Kizawa ◽  
Hiroyuki Kohara ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Effective Response ◽  
Specialized Palliative Care ◽  
Palliative Care Units ◽  
Bereaved Family

Purpose To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. Subjects and Methods A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). Results Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. Conclusion In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.

Factors that Promote Success in Home Palliative Care: A Study of a Large Suburban Palliative Care Practice

2002 ◽  
Vol 18 (4) ◽  
pp. 282-286 ◽  
Author(s):  
Vincent Maida
Keyword(s):  
Palliative Care ◽  
Home Ownership ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Physician ◽  
Care Practice ◽  
Evaluation Tool ◽  
Home Death ◽  
Home Based ◽  
At Home

It has been repeatedly shown that most people would prefer to die in their own homes. However, many factors affect the feasibility of this choice. This study retrospectively examined the medical and nursing charts of 402 cancer patients who wished to die at home and had been referred to a palliative care service. Of those reviewed, 223 (55%) died at home, while 179 died in hospitals. The presence of more than one caregiver, an increased length of time between diagnosis and referral to a palliative care physician, an increased length of time under that physician's care, older age at referral, home ownership, and race were all significantly associated with home death, as were certain cancer diagnoses. The most compelling of these predictive factors have formed the basis for an evaluation tool, soon to be validated, to help palliative health professionals assess the viability of home-based palliative care culminating in a home death.

scholarly journals Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’

2013 ◽  
Vol 5 (3) ◽  
pp. 206 ◽  
Author(s):  
Yvonne Bray ◽  
Felicity Goodyear-Smith
Keyword(s):  
Palliative Care ◽  
Ethnic Diversity ◽  
Care Service ◽  
Family Members ◽  
Ethnic Disparities ◽  
Palliative Care Service ◽  
Cultural Groups ◽  
Structured Interviews ◽  
Information Giving ◽  
Family Perceptions

INTRODUCTION: The vision for palliative care service provision in New Zealand is for all people who are dying and their families to have timely access to culturally appropriate, quality palliative care services. An Auckland hospice’s records show that the ethnically diverse population statistics were not reflected in the referrals for hospice services. The aim of this research was to gain a patient-and-their-family perspective on the hospice, including exploration of components of service care that could be improved for various cultural groups. METHODS: Patients currently under the care of the hospice and family members were recruited from hospice records. Semi-structured interviews were conducted to explore the emerging issues. The study collected data from a purposive sample of 18 palliative care patients or carer family members, ranging in age from 39 to 81 years, who reflected the ethnic diversity of the population of the region. Interviewing was carried out by an experienced research assistant and continued until data saturation was reached. FINDINGS: Four key themes emerged – hospice personnel’s approach to patients, quality of service, cultural barriers, and strategies for future improvement. It was determined that the latter two were the most significant to address in this article. CONCLUSION: The study revealed the need for information-giving and education, including public profiling of the hospice to strengthen community involvement. Strategies to reduce ethnic disparities include strengthening the awareness of, and access to, services by connecting with cultural groups through churches, community and specific cultural media. KEYWORDS: Cultural competency; hospice care; palliative care; patient education; terminal care

Palliative care quality measures: an exploratory study

2019 ◽  
pp. bmjspcare-2018-001679
Author(s):  
Alessandra Buja ◽  
Michele Rivera ◽  
Vincenzo Baldo ◽  
Marta Soattin ◽  
Ylenia Rizzolo ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Indicators ◽  
Care Service ◽  
Healthcare Providers ◽  
Palliative Care Service ◽  
Care Quality ◽  
Local Health ◽  
Monotonic Trend ◽  
Intensity Of Care ◽  
At Home

ObjectivesThe aim of this study was to investigate how palliative care service structures and processes correlate with their outputs and outcomes, measuring the latter respectively in terms of intensity of care and death at home.MethodsThe Veneto Regional Health Authorities collected a set of 37 quality indicators for the year 2016, covering the following five dimensions: service integration, service structure, accessibility, professional processes and organisational processes. Their validity was assessed by a panel of 29 palliative care experts. A score was assigned to each indicator on the basis of its relevance. Non-parametric correlations between the care quality indicators and the measures of the palliative care outputs and outcomes were investigated, along with the presence of a monotonic trend in the performance of the local health units (LHU) grouped by ‘low’, ‘medium’ or ‘high’ scores and differences between these groups of LHUs.ResultsThe data showed that palliative care service structure and professional processes were the dimensions correlating significantly with the intensity of care coefficient. An increasingly significant statistical trend was found in both the intensity of care coefficient and the proportion of deaths at home for the three groups of LHUs in terms of the professional processes dimension.ConclusionsDespite its limitations, this study brought to light some statistically significant findings that are worth investigating in larger samples. To achieve improvements in the quality of palliative care, it is important for healthcare providers to know which variables most affect the output and especially the outcomes of the services offered.

P-143: Family members' perceptions of palliative care service needs of advanced dementia patients

2007 ◽  
Vol 3 (3S_Part_2) ◽  
pp. S144-S145
Author(s):  
Karen B. Hirschman ◽  
Jennifer M. Kapo ◽  
Sarahlena Panzer ◽  
David J. Casarett
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Service Needs ◽  
Advanced Dementia ◽  
Dementia Patients

Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences

1998 ◽  
Vol 14 (2) ◽  
pp. 14-22 ◽  
Author(s):  
Kelli I. Stajduhar ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Qualitative Methods ◽  
Family Caregiving ◽  
Family Members ◽  
Loved One ◽  
The Family ◽  
Care At Home ◽  
Depth Interviews ◽  
Hiv Aids ◽  
At Home

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

How much psychological distress is experienced at home by patients with palliative care needs in Germany? A cross-sectional study using the Distress Thermometer

2016 ◽  
Vol 15 (2) ◽  
pp. 205-213 ◽  
Author(s):  
Stefanie Küttner ◽  
Johannes Wüller ◽  
Tania Pastrana
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Karnofsky Performance Status ◽  
Care Service ◽  
Performance Status ◽  
Significant Proportion ◽  
Palliative Care Service ◽  
Distress Thermometer ◽  
Related Factors ◽  
At Home

AbstractObjective:The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.Method:Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.Results:A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0–40 = 34%, 50–70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were “fatigue” (90%), “getting around” (84%), “eating” (63%), “bathing/dressing” (60%), and “sleep” (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it “relieving.”Significance of results:A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.

Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study

2005 ◽  
Vol 19 (4) ◽  
pp. 319-327 ◽  
Author(s):  
Mariko Shiozaki ◽  
Tatsuya Morita ◽  
Kei Hirai ◽  
Yukihiro Sakaguchi ◽  
Satoru Tsuneto ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Bereaved Family

scholarly journals Home Palliative Care for Advanced Cancer: PC Can Be Introduced at Diagnosis or at Relapse in Thai Society, Independent of Oncology Service

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 112s-112s
Author(s):  
I. Nuchprayoon
Keyword(s):  
Palliative Care ◽  
Cancer Therapy ◽  
Advanced Cancer ◽  
Care Service ◽  
Palliative Care Service ◽  
Metastatic Breast ◽  
Cancer Center ◽  
Ageing Population ◽  
Oncology Service ◽  
At Home

Background: Thailand is a resource-limited country with universal health care. Cancer services are available for everyone for free, but the system has been overloaded due to limited number of qualified specialist physicians, nurses, radiology technicians, and growing demand from ageing population. Patients with advanced cancer are often not referred to a palliative care (PC) service until multiple treatment failure. Aim: To provide a better access to PC, we initiated an independent palliative care counseling and home service, focusing on families of patients with advanced cancer. Methods: The families of patients with advanced cancer were referred to our home palliative care service through cancer patient support groups, self-referral or from other physicians. Eligibility for PC was guided through a Thai national guideline of cancer treatment as well as by NCCN guideline. Early stage cancer were excluded from the service and referred to oncology service of patient's choice. For each family, we arranged a family meeting/counseling session at patient's home or a designated place and introduce palliative care as well as cancer therapy options. If the patient choose palliative care, then we provide home PC. Patients are followed at home by home visits, and continually communicated online and by phone. Family members visits palliative clinic for morphine and other medications. Results: In the first 3 years of operation, 53 adult patients with advanced or recurrent cancer and their families were counseled. Fifty chose home palliative care service, exclusively (30) or along with a hospital oncology service (20), while 3 patients preferred life-prolonging cancer therapy. The average age (±SD) of patients were 60 (±16) years. The most common cancers were stage IV or metastatic breast (7), lung (6), colorectal (6), and leukemia/lymphoma (6). The median survival time of this PC cohort was 3.1 months, with 16 (32%) living > 6 months, and 10 (20%) > 1 year. Of 36 patients who had died, 22 (61%) died at home, 13 (36%) at a local hospital, and 1 (3%) at a cancer center. Conclusion: For advanced cancer patients, palliative care can be introduced early and efficiently by PC team and most people would prefer PC. PC counseling may serve as an entry point to cancer care system. For patients who choose early palliative care, it can reduce burden on the existing busy oncology service, while providing satisfaction on patients and family.

Economic and clinical outcomes of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service

2020 ◽  
Vol 44 (5) ◽  
pp. 791
Author(s):  
Sam G. Moreton ◽  
Emily Saurman ◽  
Glenn Salkeld ◽  
Julie Edwards ◽  
Dawn Hooper ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nurse Practitioner ◽  
Hospital Admissions ◽  
Care Service ◽  
Palliative Care Service ◽  
Hospitalisation Cost ◽  
Community Based ◽  
Care Services ◽  
Palliative Care Services ◽  
At Home

ObjectiveThe aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS) MethodsParallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. ResultsPatients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients’ choices regarding place of care and death and what was ‘important’ to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance. ConclusionsNurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic?National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add?The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners?Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.

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