Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers’ heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers’ knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers’ perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices.

Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized.

Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26–72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers.

Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

To describe the development and implementation of a novel tool designed to enhance nurse–patient communication in a major academic cancer center, which nurses can learn quickly, incorporate into their primary palliative care practice, and broadly disseminate in order to improve the patient experience.

An evidence-based empathic communication tool and educational program were designed to provide essential skills to oncology nurses in having discussions with patients about their personal values. Evaluation included nurse focus groups, pre- and post-course evaluations and interviews, and patient questionnaires.

Nurses were satisfied with the educational program and found the communication tool effective in a variety of clinical situations including discussions about personal values. Patients reported increased occurrences of these discussions when nurses utilized the framework (97% vs. 58%, p < 0.0001) and a higher quality of clinician communication (mean [SD] from 0 = very worst to 10 = very best: 7.18 [2.3] vs. 5.04 [2.9], p = 0.001).

Skilled, empathic communication is an essential component of high-quality primary palliative care. Oncology nurses are well suited to lead communication and provide this care as part of an interprofessional team. The training and tool described here are targeted and efficient, and prepare nurses to respond skillfully to emotion while facilitating important discussions about patient values.

In 2019, the Danish parliament issued legislation requiring Danish physicians to clarify and honor seriously ill patients’ treatment preferences. The American POLST (Physician Orders for Life-Sustaining Treatment) document could be a valuable model for this process. The aim of the study was to examine patients' preferences for life-sustaining treatment and participant assessment of a Danish POLST form.

The study is a prospective intervention based on a pilot-tested Danish POLST form. Participant assessments were examined using questionnaire surveys. Patients with serious illness and/or frailty from seven hospital wards, two general practitioners, and four nursing homes were included. The patients and their physicians completed the POLST form based on a process of shared decision-making.

A total of 95 patients (aged 41–95) participated. Hereof, 88% declined cardiopulmonary resuscitation, 83% preferred limited medical interventions or comfort care, and 74% did not require artificial nutrition. The preferences were similar within age groups, genders, and locations, but with a tendency toward younger patients being more in favor of full treatment and nursing home residents being more in favor of cardiopulmonary resuscitation. Questionnaire response rates were 69% (66/95) for patients, 79% (22/28) for physicians, and 31% (9/29) for nurses. Hereof, the majority of patients, physicians, and nurses found that the POLST form was usable for conversations and decision-making about life-sustaining treatment to either a high or very high degree.

The majority of seriously ill patients did not want a resuscitation attempt and opted for selected treatments. The majority of participants found that the Danish POLST was usable for conversations and decisions about life-sustaining treatment to either a high or a very high degree, and that the POLST form facilitated an opportunity to openly discuss life-sustaining treatment.

Sexual self-concept has an influence on the sexual behaviors of women with breast cancer. Supportive programs for these women have demonstrable empirical efficacy; however, their effectiveness has not been examined. The aim of this study was to investigate the effect of a supportive program based on social networks on the sexual self-concept of women with breast cancer.

In this randomized controlled single-blind trial, 60 women were assigned to the intervention (n = 30) and control (n = 30) groups using permuted block randomization. Overall, eight 45-min intervention sessions were held (twice a week). The primary outcome was sexual self-concept, and the secondary outcomes were women's sexual quality of life and participants’ satisfaction. The questionnaires were completed by patients before the intervention and immediately and 1 month after the intervention.

The generalized equation estimation test showed that the positive sexual self-concept score of the intervention group versus the control group had increased by 15.67 points (P < 0.001, effect size = 2.00) 1 month after the intervention. The negative sexual self-concept score had decreased by 2.65 points (P < 0.001, effect size = 0.74), and the situational sexual self-concept score had upturned by 6.82 points (P < 0.001, effect size = 2.08) in the intervention group at the same period. Also, the sexual quality of life score in the intervention group compared to the control group generally increased by 13.82 points (P < 0.001, Effect size = 2.08) 1 month following the intervention.

A social networking support program can be a promising approach to improve the sexual self-concept of women with breast cancer.

Iranian Clinical Trial Register, IRCT20150608022609N8. Registered on 2 July 2020.

Meaning-centered psychotherapy (MCP) principles may provide a framework for engaging healthcare professionals in meaning-centered exploration as a novel approach to prevent burnout and enhance wellbeing in healthcare professionals through heightening personal meaning. This case study aimed to teach MCP to masters-trained social workers for use with medical patients. While the primary aim was to teach MCP to masters-trained social workers, this proof-of-concept project and this paper focus on a secondary aim of enhancing meaning and connection in the virtual workplace.

A group of social workers participated in a 7-session MCP pilot from October 13th to November 24th, 2020. After each session, participants were asked to complete an anonymous continuing education evaluation with questions regarding clarity, organization, and relevance of the presentation related to use with their patient populations. Additional open-ended items queried participants for general comments about their experience using MCP to enhance professional fulfillment during COVID-19.

Nine social workers participated in the MCP pilot. Several qualitative themes emerged, including enhanced meaning, communication, connection, and agency in the virtual workplace.

This pilot demonstrated the feasibility and acceptability of using an adapted MCP instruction with hospital-based social workers during the COVID-19 pandemic to facilitate wellbeing. While MCP was originally created to intervene with patients with life-threatening illnesses, the brief, manualized experiential nature of the intervention lends itself to modification with staff for the purpose of enhancing meaning and community in their own lives.

This study investigated the possible correlation between emotional distress linked to dignity and dysfunctional temporal orientations in the oncological context.

We conducted an exploratory study between December 2020 and February 2021, referring to a sample of 107 patients in active treatment for solid tumors belonging to the Oncology Department of the Fondazione Poliambulanza (Brescia, Italy). We administered two self-report questionnaires: the Patient Dignity Inventory (PDI-IT) (Italian version, Grassi L, Costantini A, Caruso R, et al. (2017) Dignity and psychosocial-related variables in advanced and nonadvanced cancer patients by using the patient dignity inventory-Italian version. Journal of Pain and Symptom Management 53(2), 279–287), as a measure of perceived level of dignity, and the Italian version of the Zimbardo Time Perspective Inventory scale (ZTPI) (Zimbardo PG and Boyd JN (2009) Il paradosso del tempo. La nuova psicologia del tempo che cambierà la tua vita. Milano: Mondadori), as a measure of the experiential dimensions of time, such as past, present, and future.

From the PDI-IT emerged that our sample reported high levels of physical and psychological distress. Furthermore, we founded higher distress in patients under 55 years (p = 0.04) and lower distress in retired patients (p = 0.01). The ZTPI showed in our patients prevailing orientations to the past-positive (39.3%) and the future (37.4%). We noticed a gender difference: men were mainly oriented to the future while women to the past-positive. Moreover, married subjects reported a prevalent orientation to past-positive and the future. Finally, data analysis found moderate positive correlation between the “Negative Past” dimension of ZTPI and high levels of physical (r = 0.203, p = 0.03) and psychological distress (r = 236, p = 0.01).

In our experience in oncology, dignity and time perspective play a central role as indicators of the quality of care. Our study shows the importance of a treatment path that integrates the constructs of Dignity and Time Perspective to favor a better psychological adaptation.

Literature suggests that home care professionals could be at higher risk of burnout than their colleagues in hospital settings, but research on home-based palliative care is still limited. Our study investigates psychosocial risk factors and burnout among workers involved in palliative care, comparing inpatient hospice, and home care settings.

A cross-sectional study was carried out in a single palliative care organization providing inpatient hospice-based and home care-based assistance in a large urban area of Northern Italy. Participants completed a self-administered questionnaire collecting socio-demographic and occupational data, psychosocial risk factors, and burnout scales (Psychosocial Safety Climate 4; Conflict and Offensive Behavior — COPSOQ II; Work Life Boundaries; Work-home Interaction; Peer Support — HSE; Copenhagen Burnout Inventory).

The study sample included 106 subjects (95% of the overall eligible working population) who were predominantly female (68%) and nurses (57%), with a mean age of 41 years. Compared to inpatient hospice staff, home care workers reported more frequent communications with colleagues (p = 0.03) and patients/caregivers (p = 0.01), while there were no differences in the perception of work intrusiveness. Inpatient hospice workers showed lower peer support (p = 0.08) and lower psychosocial safety climate (p = 0.001) than home care colleagues. The experience of aggressive behaviors was rare, and it was relatively more frequent among inpatient hospice workers, female workers, and health assistants. Average scores of burnout scales were similar for both groups except for caregiver-related burnout, which was higher among inpatient hospice workers compared to home care colleagues (p = 0.008). The number of subjects at risk for work-related burnout was similar for both groups.

Our study confirms the presence of psychological and physical fatigue in both home-based and inpatient hospice palliative care. Results suggest that home care assistance may not be characterized by higher psychological burden compared to inpatient hospice setting. Given the general tendency to increase home-based care in our aging population, it is essential to broaden the knowledge of psychosocial risks in this specific context to properly protect workers’ health.

Fatigue is frequently co-existing with other symptoms and is highly prevalent among patients with cancer and geriatric population. There was a lack of knowledge that focus on fatigue clusters in older adults with cancer in hospice care.

To identify fatigue-related symptom clusters in older adult hospice patients and discover to what extent fatigue-related symptom clusters predict functional status while controlling for depression.

This was a cross-sectional study in a sample of 519 older adult hospice patients with cancer, who completed the Memorial Symptom Assessment Scale, the Center for Epidemiological Studies Depression, Boston Short Form Scale, and the Palliative Performance Scale. Data from a multi-center symptom trial were extracted for this secondary analysis using exploratory factor analysis and hierarchical multiple regression analysis.

Data from 519 patients (78 ± 7 years) with terminal cancer who received hospice care under home healthcare services revealed that 39% of the participants experienced fatigue-related symptom clusters (lack of energy, feeling drowsy, and lack of appetite). The fatigue cluster was significantly associated positively with depression (r = 0.253, p < 0.01), and negatively with functional status (r = −0.117, p < 0.01) and was a strong predictor of participants’ low functional status. Furthermore, depression made a significant contribution to this predictive relationship.

Older adult hospice patients with cancer experienced various concurrent symptoms. The fatigue-specific symptom cluster was identified significantly associated with depression and predicted functional status. Fatigue should be routinely monitored in older adults, especially among hospice cancer patients, to help reduce psychological distress and prevent functional decline.

Spiritual care is a component of quality palliative care, but healthcare providers have reported lack of training as a barrier to its provision. This paper describes the evaluation of the Interprofessional Spiritual Care Educational Curriculum (ISPEC)© which is a six-module evidence-based curriculum developed for teaching interprofessional spiritual care based on a generalist-specialist model of spiritual care.

The course was run online in 2020 and attended by 20 healthcare workers who were invited to join the evaluation. Questionnaires were completed by participants before the training program (baseline), immediately after the training (post), and 3 months following the end of the program (follow-up). After the follow-up questionnaires, participants were invited to join a Focus Group to expand on their responses. Descriptive and exploratory statistical analysis was performed on quantitative data, and qualitative data was subjected to Thematic Analysis.

Exploratory data analysis showed that self-reported competence, confidence, and comfort in providing spiritual care significantly improved following training (p = 0.002) and were maintained over time (p = 0.034). In qualitative analysis, the main themes were: (1) overwhelmed by content; (2) the importance of practical training; (3) spiritual care is for everyone; (4) spiritual care should come from the heart; (5) training needs to be inclusive; and (6) spirituality is culturally specific.

This article describes an evaluation of the ISPEC© spiritual care training course administered to an Australian healthcare cohort using an online format. These preliminary findings suggest that the ISPEC© program is effective in improving the ability of healthcare professionals to provide spiritual care. More work is needed to improve the cultural relevance of the program in Australia.

Dignity therapy (DT) is a brief psychotherapeutic intervention with beneficial effects in the end-of-life experience. Since it provides a continuing bond between the bereaved and their loved ones, we speculated that it could be offered as a novel bereavement intervention following the patient's death. We aimed to develop, translate, and validate the Posthumous DT Schedule of Questions (p-DT-SQ), for administration with bereaved relatives or friends.

The original DT-SQ was adapted for application with bereaved relatives or friends. It was translated and back-translated to European Portuguese and revised by an expert committee. Content validity was assessed by the Content Validity Coefficient (CVC). The instrument was tested in a sample of 50 individuals from a large Senior Residence in Lisbon (10 elderly people and 40 healthcare professionals), who assessed face validity.

The p-DT-SQ showed very good CVC (0.94) and face validity: it was considered clear, easy to understand, reasonable in length, and not difficult to answer. Participants felt comfortable answering the p-DT-SQ and felt it could positively affect the way themselves or others would remember their loved ones, allowing an understanding of the deceased's concerns, interests, and values.

We created and validated an adapted version of the DT-SQ to be used posthumously by bereaved family and friends. The European Portuguese version of the p-DT-SQ is clear, comprehensible, and aligned with the fundamentals of DT. While our data suggest its beneficial effects for those who are bereft, future research is needed to examine the impact of p-DT-SQ for those who are grieving.

We examined barriers and facilitators to patient-family physician discussions in Israel about advance care planning, including preparation of an advance directive by adults over age 65, as part of a program in two community health clinics which afforded family physicians the opportunity to dedicate time to such discussions with patients. To the best of our knowledge, the program is the first of its kind in Israel.

We used thematic analyses of qualitative data collected through 22 interviews with patients with pro-advanced care planning attitudes and three focus groups with eleven family physicians.

Overall, three themes in the interviews with patients and two themes in the focus groups with physicians emerged. The program gave people with pro-advanced care planning attitudes the opportunity to follow through with their ideas. We found that patients viewed their family physicians as facilitators and that the use of an information leaflet was an effective way to promote advance directives. Family physicians expressed positive attitudes toward assisting patients in the preparation of advance directives and welcomed an allotment of time for this endeavor as part of their schedule but expressed hesitation about assisting patients concerning legal and moral issues.

A pro-advanced care planning attitude is not enough for patients to complete the process of creating an advance directive; patients need active encouragement and intervention in order to turn their ideas into action. More patient and physician education are necessary to enable patients to protect their right to self-determination in end-of-life medical decision-making and to support physicians as facilitators of the process.

Adolescent and young adult (AYA) cancer patients may be at high risk of experiencing psychological distress because their diagnosis came during a key time of consolidation of identity and social growth. This study aimed (1) to examine the prevalence of psychological distress among AYA cancer patients within a year of diagnosis to long-term survivors and (2) to describe socio-demographic and cancer-related characteristics associated with psychological distress.

In a cross-sectional web-based survey, patients who scored 5 or more on the Kessler Psychological Distress Scale were assessed for significant psychological distress. Logistic regression examined whether demographics, clinical variables, and social support were associated with psychological distress.

A total of 206 young adult cancer patients participated. The median age at the survey was 34.5 years (range: 22–39 years), and 87.4% were female. The prevalence of psychological distress was 55.3%. Psychological distress among patients diagnosed within a year and long-term survivors (≥10 years since diagnosis) was significantly higher than patients 1–4 years since diagnosis. Pain, decrease in income after a cancer diagnosis, experience of negative change in work/school after a cancer diagnosis and poor social support were significantly associated with psychological distress.

Over half of young adult patients had significant psychological distress in Japan. Our findings potentially contribute to the intervention components for distress management among AYA cancer survivors.

This study is aimed to evaluate the validity and reliability of the Cancer Stigma Scale for the Turkish population (CASS-T).

The sample of the study consisted of 412 students of a foundation university located in Ankara, Turkey. The reliability of the CASS was evaluated using the Cronbach alpha reliability coefficient and item-total score correlations. Exploratory factor analyses were applied to examine the factor structure of the scale and its construct validity. To test the time invariance of the scale, the relationships between the scores obtained from the first and second applications were examined using the intraclass correlation coefficient (ICC).

The Cronbach's alpha coefficient of CASS-T was 0.83. In the factor analysis, it was confirmed that the scale has a six-dimensional structure in parallel to original version, namely Avoidance, Severity, Responsibility, Policy opposition, Awkwardness, and Discrimination. The ICC values all remained in the range that indicates the reliability of the 0.63–0.71 to be substantial. The contribution of the six factors of the CASS-T scale to the variance is 57.8.

The Turkish version of the CASS was confirmed to have good reliability and validity for evaluating stigma toward cancer in Turkish society.

To investigate the spiritual care needs and their attributes among Chinese elders hospitalized for severe chronic heart failure (CHF) based on the Kano model, in order to provide a reference for improving the quality and satisfaction of spiritual care.

An observational design was implemented, and the STROBE Checklist was used to ensure quality reporting of the study. The demographic characteristics questionnaire, the Nurse Spiritual Therapeutics Scale, and the Kano model–based Nurse Spiritual Therapeutics Attributes Scale were used. A convenience sample of 451 patients were selected from 2 hospitals. Descriptive statistics, and Kano model were used to analyze the data.

The total score of spiritual care needs was 29.95 ± 7.51. Among the 12 items, 3 items were attractive attributes, all of which were located in Reserving Zone IV; 5 items were one-dimensional attributes, of which 3 were located in Predominance Zone I and 2 were located in Improving Zone II; 2 items were must-be attributes, all of which were located in Improving Zone II; and 2 items were indifference attributes, all of which were located in Secondary Improving Zone III.

The spiritual care needs among Chinese elders hospitalized for severe CHF were moderate. The must-be and one-dimensional attributes mainly focus on “creating a good atmosphere” and “sharing self-perception” dimensions, while attractive attributes mainly focus on “sharing self-perception” and “helping thinking” dimensions. It is suggested that hospital authority should develop and innovate attractive attributes on the basis of maintaining and perfecting must-be and one-dimensional attributes, and objectively analyze and optimize indifference attributes.

Theoretical and conceptual frameworks are often underutilized in research, which may diminish understanding of the phenomena and contribute to the under-development of interventions. The topic of low/disparate rates of Advance Care Planning (ACP) among African Americans has been researched extensively; however, the use of theoretical and/or conceptual frameworks has not been reported. The purpose of this review is to describe theoretical and/or conceptual frameworks utilized in studies that investigated factors affecting perceptions of ACP or ACP rates among African Americans.

Utilizing a narrative, literature review process, themes were generated, applied, and described with frequencies across broad categories of study characteristics, framework categories and key constructs, mode of framework application, and quality of framework reporting.

Four main types of frameworks were found with behavioral frameworks dominating the collection of studies. Complex, systems theoretical frameworks were less common. Framework use and reporting quality findings are described.

The problem of disparate rates of ACP among African Americans is nuanced and varied, stemming from both internal (e.g., personal, behavioral) and external factors (e.g., living conditions). While important and necessary to focus on internal, psychological factors, it is also vital to incorporate systems’ theories such as the Cumulative Disadvantage Theory to better understand and demonstrate inherent complexities. Recommendations for framework use are discussed for research and clinical application. Incorporating complexity science approaches and multi-systems theories may support multi-level modeling needed to understand this problem and reduce ACP disparities in this population.

Palliative care guidelines recommend an interdisciplinary approach to address patients’ awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will.

We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation.

Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality.

Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

There has been increasing recognition of the potential of games in health; however, knowledge of their application in palliative care is lacking. Therefore, this study aimed to identify and map the available evidence on the use of games in palliative care, analyzing how research has been conducted on this topic and identifying gaps in knowledge.

A scoping review was carried out. The literature search was conducted using the respective descriptors and search syntax appropriate to each of the databases searched. The review included all study types with no time limits.

Of the 685 articles initially identified, 53 were included for final analysis. Several different game types were identified, with the majority of studies using role-play (n = 29) and card games (n = 17). The games analyzed were essentially aimed at empowering patients (n = 14), and in some cases, extended to families or caregivers, as well as to medical and nursing students. The analysis of the articles in this review resulted in two major themes: Role-playing for training in palliative care and card games to discuss end-of-life care.

Games allow space for the expression of emotions and promote creativity. They can be applied both in a training context, to enable health professionals to develop essential skills in palliative care, and for patients, families, and caregivers, allowing them to talk about serious things while playing.