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Hospice is an important method of promoting quality end-of-life (EoL) care, yet its utilization is relatively low in underserved populations. The unique characteristics of a border community—such as a lack of healthcare resources and cultural integration—impact EoL decision making. The aim of our study was to assess the willingness to use hospice care services and its predictors among family caregivers of Latino patients in the United States (U.S.)–Mexico border region of Southern California.
Method:
This study analyzes secondary data from a home health agency in the U.S.–Mexico border region. Quantitative data were collected via a face-to-face interview with 189 caregivers of patients enrolled in the agency. Bivariate tests and logistic regression were employed to address our study objectives.
Results:
The majority (83%) of family caregivers were willing to use hospice services for their loved ones. The factors impacting willingness to use hospice services included the primary language of the caregiver (OR = 6.30, CI95% = 1.68, 23.58); trust in doctors to make the right decisions (OR = 3.77, CI95% = 1.05, 13.57); and the belief that using hospice care means giving up on life (OR = 0.52, CI95% = 0.30; 0.88). Caregivers who trusted doctors to make the best decisions for their loved ones and English-speaking caregivers were more willing to utilize hospice services, while caregivers who held a strong belief that hospice care means giving up on life were less likely to consider using hospice care for their loved ones.
Significance of results:
The willingness of family caregivers to use hospice services for their loved ones is influenced by cultural perspectives about hospice care. As the importance of family involvement in EoL care planning has been highlighted, family caregivers' beliefs about hospice care services need to be addressed within their particular cultural context.
Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home.
Method:
Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a 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 DT and HADS were applied, and sociodemographic and medical data were collected.
Results:
A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0–40 = 30.3%, 50–70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and –LR = 0.203 (<0.3).
Significance of results:
The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.
Beginning in 2007, all newly diagnosed cancer patients at the Koo Foundation Sun Yat-Sen Cancer Center (KF–SYSCC) were screened for psychosocial distress. Our social workers, as part of the psychosocial care team (PCT), have engaged in proactive outreach with patients identified as distressed. The goal of the present study was to assess the prevalence of psychosocial distress and the extent of contact between the PCT and distressed patients.
Method:
Newly diagnosed patients who were treated at KF–SYSCC between 2007 and 2010 for cancer were eligible if there were at least 100 patients with the same type of cancer. Before treatment began, they were screened with the Pain Scale and the Distress Thermometer (DT) and had the option to specify a desire for help. The rates of distress were analyzed by cancer type and by probable related factors. Information regarding contact with the PCT was retrieved from computerized databases.
Results:
Overall, some 5,335 cancer patients representing 12 major cancer types were included in our study. Of these, 1,771 (33.20%) were significantly distressed. By multivariate logistic regression, younger age, female gender, higher pain score, and disease stage, but not cancer type, were found to be associated with higher rates of distress. Among these distressed patients, 628 (36%) had some contact with the PCT.
Significance of results:
This Taiwanese study with a large sample size revealed a prevalence rate of psychosocial distress similar to rates found in Western countries. Contact with the PCT was established in only 36% of significantly distressed patients, despite a proactive outreach program. It is very important to have screening results made available in a timely fashion to the psycho-oncology team so that appropriate care can be offered promptly.
Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.
Method:
Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.
Results:
Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.
Significance of results:
Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.
The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.
Methods:
This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.
Results:
Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.
Significance of Results:
This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
The importance of spirituality in the dying process is well documented. However, what spirituality means in these situations is hard to discern because few people (patients, families, researchers, or caregivers) will view spirituality in the same way. The present research supports the use of a spiritual framework consisting of five common attributes (meaning, beliefs, connections, self-transcendence, and value) as a mechanism for viewing spirituality for people nearing the end of life. Using qualitative interviews from two related studies, our study aims to describe the prevalence of spirituality and its nature according to these five spiritual attributes.
Methods:
Data from two previous studies were analyzed. The first employed the methods of grounded theory to understand the strategies adolescents used to manage the impending death of a parent. Some 61 participants from 26 families were interviewed, including ill parents/patients, well parents/caregivers, and adolescents. The second study consisted of 15 interviews with the surviving parent and adolescents from 6 of these families after the death of the parent.
Results:
The original research from which these data were drawn did not seek to describe spirituality. However, spiritual themes were prevalent in the stories of many participants and included each of the five spiritual attributes.
Significance of Results:
Our findings demonstrate the prevalence of spirituality in the everyday lives of these families and supports the use of the spiritual framework according to the five common attributes to describe spirituality.
Communication based on patient preferences can alleviate their psychological distress and is an important part of patient-centered care for physicians who have the task of conveying bad news to cancer patients. The present study aimed to explore the demographic, medical, and psychological factors associated with patient preferences with regard to communication of bad news.
Methods:
Outpatients with a variety of cancers were consecutively invited to participate in our study after their follow-up medical visit. A questionnaire assessed their preferences regarding the communication of bad news, covering four factors—(1) how bad news is delivered, (2) reassurance and emotional support, (3) additional information, and (4) setting—as well as on demographic, medical, and psychosocial factors.
Results:
A total of 529 outpatients with a variety of cancers completed the questionnaire. Multiple regression analyses indicated that patients who were younger, female, had greater faith in their physician, and were more highly educated placed more importance on “how bad news is delivered” than patients who were older, male, had less faith in their physician, and a lower level of education. Female patients and patients without an occupation placed more importance on “reassurance and emotional support.” Younger, female, and more highly educated patients placed more importance on “additional information.” Younger, female, and more highly educated patients, along with patients who weren't undergoing active treatment placed more importance on “setting.”
Significance of Results:
Patient preferences with regard to communication of bad news are associated with factors related to patient background. Physicians should consider these characteristics when delivering bad news and use an appropriate communication style tailored to each patient.
The spiritual well-being of terminally ill cancer patients is an important indicator of the quality of their lives and of the quality of hospice care, but no validated tools are available for assessing this indicator in Taiwan.
Method:
The present cross-sectional study validated the Spiritual Well-Being Scale–Mandarin version (SWBS–M) by testing its psychometric properties in 243 cancer patients from five teaching hospitals throughout Taiwan. Construct validity was tested by factor analysis and hypothesis testing. Patients' spiritual well-being and quality of life were assessed using the SWBS–M and the McGill Quality of Life Questionnaire (MQoL), respectively.
Results:
Overall, the SWBS–M had an internal consistency/reliability of 0.89. Exploratory factor analysis showed that the SWBS–M had an underlying two-factor structure, explaining 46.94% of the variance. SWBS–M scores correlated moderately with MQoL scores (r = 0.48, p < 0.01). Terminally ill cancer patients' spiritual well-being was inversely related to their average pain level during the previous 24 hours (r = –0.183, p = 0.006). Cancer patients' spiritual well-being also differed significantly with their experience of pain (t = –3.67, p < 0.001); terminally ill cancer patients with pain during the previous 24 hours had a lower sense of spiritual well-being than those without pain.
Significance of results:
Our findings support a two-factor model for the SWBS–M in terminally ill Taiwanese cancer patients. We recommend testing the psychometric properties of the SWBS–M in different patient populations to verify its factorial structure in other Asian countries.
The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program.
Method:
A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes.
Results:
Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care.
Significance of Results:
Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family's life for years during their child's cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.
Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician–patient communications at the end of life.
Method:
During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis.
Results:
Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from “hope for a cure” to “hope for a good death.” Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term “incurable illness,” but rather by informing the patient that they had no remaining curative treatments available.
Significance of results:
Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.
This study examined insomnia in the context of breast cancer, both as an independent symptom and as a component of a symptom cluster that includes depression, anxiety, fatigue, and pain.
Method:
Women with a history of breast cancer currently taking an aromatase inhibitor and who had completed cancer treatment at least one month prior to enrollment were included (n = 413). Participants completed validated measures of insomnia, fatigue, pain, depression, and anxiety. Factor analysis was utilized to examine the extent to which these symptoms could be represented by common latent factors. Insomnia severity was then separated into a symptom cluster component (I–SC) and an insomnia-unique (I–U) component. The associations between each insomnia component and demographic and clinical factors were examined in multivariate models.
Results:
A single-factor solution provided the best fit to the symptom measures. Some 53.3% of the variance in insomnia severity was captured by this symptom cluster (I–SC), with the remaining 43.7% being unique to insomnia (I–U). Unique patterns of demographic factors (e.g., age and body–mass index), but not clinical factors, were associated with each insomnia measure.
Significance of results:
Approximately 50% of insomnia severity was related to the symptom cluster, with the rest being unique to insomnia. Different sociodemographic risk factors were related to the different insomnia measures. Stronger underlying foundations for the mechanisms of each component could lead to refined diagnoses and targeted interventions for addressing the overall insomnia burden in cancer patients.
The purpose of our systematic review was to determine whether the introduction of palliative care (PC) teams reduces length of stay and/or mortality for terminally ill patients (TIPs) in an intensive care unit (ICU).
Method:
We hoped to examine studies that compared TIPs in an ICU who received end-of-life care following implementation of a PC team (intervention group) to those who received care where PC teams had not yet been introduced (control group). We searched MEDLINE via PubMed, LILACS, Scopus, Embase, and Cochrane CENTRAL (search conducted in December of 2015) without language restrictions. Our outcome measures were length of stay in an ICU, presented as an average difference with a corresponding 95% confidence interval (CI95%), and mortality in the ICU, presented as a risk ratio with a corresponding CI95%. Two of our authors independently extracted all of the data.
Results:
Of the 399 publications identified, 27 were selected for full-text analysis and 19 were excluded, leaving 8 articles for inclusion, which involved a total of 7,846 patients. A metaanalysis of mortality in the ICU was conducted with four studies. Lower mortality was found in the intervention group: risk ratio = 0.78 (CI95% = 0.70–0.87), p < 0.00001, I2 = 18%. Length of stay in the ICU was presented as a mean and standard deviation in four studies, and the result was a reduction of ~2.5 days in the length of stay with application of the intervention: mean = –2.44 days (CI95% = –4.41 to –0.48), p = 0.01, I2 = 86%.
Significance of results:
Introduction of palliative care teams can reduce mortality rates in the ICU, and perhaps shorten length of stay in the ICU for terminally ill patients.
The concept of “wisdom” is beginning to emerge in the oncology literature, raising questions concerning: (1) how the concept of wisdom is used in oncology literature; (2) the ways in which wisdom has been a focus of inquiry within oncology care; and (3) how wisdom is characterized when the term is used.
Method:
A scoping review, using Arksey and O'Malley's five-step framework, was undertaken to address these questions. In consultation with oncology reference librarians, “wisdom”- and “oncology”-related search terms were identified, and four electronic databases were searched: CINAHL, SocINDEX, PubMed, and PsychINFO. After removal of duplicates and application of inclusion and exclusion criteria, 58 records were identified and included for analysis.
Results:
The concept of wisdom was employed with a breadth of meanings, and 58 records were schematized into 7 genres, including: (1) empirical research with wisdom foregrounded as a study focus (n = 2); (2) empirical research articles where “wisdom” appears in the findings (n = 16); (3) a quality-improvement project where wisdom is an embedded concept (n = 1); (4) essays where wisdom is an aspect of the discussion (n = 5); (5) commentary/opinion pieces where wisdom is an aspect of its focus (n = 6); (6) personal stories describing wisdom as something gleaned from lived experience with cancer (n = 2); and (7) everyday/taken-for-granted uses of wisdom (n = 26).
Significance of Results:
The notion of wisdom has a taken-for-granted presence in the published oncology literature and holds promise for future research into patient and clinician wisdom in oncology care. Nonetheless, the terminology is varied and unclear. A scholarly focus on wisdom has not been brought to bear in cancer care to the degree it has in other fields, and research is in the early stages. Various characterizations of wisdom are present. If such a resource as “wisdom” exists, dwelling in human experiences and practices, there may be benefit in recognizing wisdom as informing the epistemologies of practice in oncology care.