The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.

A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care.

Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient’s gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner.

These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient’s or spouse’s/partner’s gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient’s wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.

Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient–caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers.

Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP.

TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives.

TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson’s carative model.

Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed (n = 3393) using Google NLP.

Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), “Treating the patient with respect” (+.54), and “Emotional, spiritual, bereavement support” (+.60). Lowest sentiment scores were “Insurance, administrative or billing” (–.37), “Lack of staffing” (–.32), and “Communication with the family” (–.01).

In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors’ engagement with survivorship care.

We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.

We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.

Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors’ anxieties about their future health.

In this study, we assessed the patient–oncologist relationship, conceptualized as the working alliance from a dyadic perspective, and its relation to locus of control.

One hundred and three oncologist–patient dyads were recruited. Measures included a sociodemographic and medical questionnaire; the “internal, powerful others, and chance” locus of control scale; and the working alliance inventory.

Application of the actor–partner interdependence model yielded 2 actor effects: a positive association between oncologist “internal” locus of control and oncologist working alliance, and a negative association between oncologist “chance” locus of control and oncologist working alliance. It also yielded one partner effect: a positive association between oncologist “internal” locus of control and patient working alliance.

The actor–partner effect suggests that oncologists’ locus of control has a role in the establishment of the patient–oncologist working alliance; oncologists’ internal locus of control is a dominant factor affecting not only their own perceived alliance but patients’ perceived alliance as well.

Advance care planning (ACP) conversations require the consideration of deeply held personal values and beliefs and the discussion of uncertainty, fears, and hopes related to current and future personal healthcare. However, empirical data are limited on how such spiritual concerns and needs are supported during ACP. This study explored board-certified healthcare chaplains’ perspectives of patients’ spiritual needs and support in ACP conversations.

An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey included 3 open-ended questions about patients’ hopes and fears and about how the chaplains addressed them during ACP conversations. Written qualitative responses provided by 244 of the chaplains were examined with content analysis.

The majority of the 244 chaplains were White (83.6%), female (59%), Protestant (63.1%), and designated to one or more special care units (89.8%). Major themes on patients’ hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions; (2) suffering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and (5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listening to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith, values, and preferences into ACP; and (3) education, empowerment, and advocacy.

ACP conversations require deep listening and engagement to address patients’ spiritual needs and concerns – an essential dimension of engaging in whole-person care – and should be delivered with an interdisciplinary approach to fulfill the intended purpose of ACP.

The investigators conducted a psychosocial needs assessment of mesothelioma patients through self-report measures of quality of life (QOL), coping, depression, and social support.

Patients with malignant pleural mesothelioma (MPM) (N = 67) completed a battery of assessments at a single timepoint after being approached during routine medical oncology clinic appointments or by letter.

Participants were predominately male (70.0%; n = 47) and ranged in age from 35 to 83 years old (M = 65.61, SD = 9.71). Most participants were white (88.0%; n = 59), and 10.0% (n = 7) were identified as Hispanic. The majority were married or living with a partner (93.0%; n = 62) and had some college or more education (64.0%; n = 43). Fourteen percent of participants (n = 11) endorsed significantly elevated depression symptoms. No significant demographic or clinical differences in depressed compared to nondepressed participants were observed, with a trend toward those identifying as Hispanic and those who were divorced as being more likely to be depressed. For the total sample, the most frequently endorsed coping strategies were active coping, emotional support, and acceptance.

The present study did not identify any clear correlates of depression or QOL among patients with MPM. This research contributes to the small literature on psychosocial functioning in patients with MPM and provides putative directions for future larger studies and the development of interventions to provide appropriate support to diverse patients with MPM.

To examine the thematic features of dignity therapy generativity documents of advanced cancer patients receiving chemotherapy in mainland China from the perspective of meaning-making during dignity therapy.

This is a qualitative descriptive study. Content analysis was used to analyze 24 dignity therapy generativity documents derived from a quasi-experimental trial of dignity therapy for advanced cancer patients receiving chemotherapy in a daycare center at a cancer hospital in northern China.

Among the 24 advanced cancer patients whose generativity documents were analyzed, 14 were male and ranged in age from 26 to 78 years (average = 50.3). Two dimensions emerged from the data: (1) the sources of meaning in life, which consisted of social relationships, things and circumstances providing meaning in life, and (2) the ultimate meaning in life, referring to finding one’s real self and realizing the purpose in life, including personal life goals, dignity and autonomy, and morality of patients.

The multidimensional constructs of meaning in life with distinctive traditional Chinese cultural characteristics could provide insights into dignity-conserving care for advanced cancer patients with Chinese culture and provide evidence for refining the implementation protocol of DT through intentionally addressing the ultimate meaning of patients in the therapeutic session.

The study aimed to explore the determinants of quality of life (QoL) among Omani family caregivers (FCGs) of adult patients with cancer pain.

A descriptive cross-sectional design, measures of caregiver reaction, knowledge about cancer pain, self-efficacy for cancer pain and other symptom management, QoL, and patient functional status were used to collect data from 165 FCGs and patients. Descriptive, correlation, and regression analyses were performed.

Most patients had intermittent (83%) and severe (50.9%) cancer pain. The FCGs had low QoL (58.44 ± 17.95), and this mostly impacted support and positive adaptation (55.2%). Low QoL was associated with low self-rated health, low confidence in the ability to control the patient’s pain, low self-efficacy, high perceived distress due to patient pain, and a high impact of caregiving on physical health. The level of caregiver distress due to the patient’s pain (p < 0.01), patient’s functional status (p < 0.01), and perceived impact of caregiving on health (p < 0.05) were significant predictors of overall QoL.

Omani FCGs of patients with cancer pain suffer a negative impact on their QoL, and this is related to the patient’s level of pain and functional status, caregiver’s health, and self-efficacy in cancer pain and symptom management. The FCGs’ QoL may be enhanced by augmenting their skills and self-efficacy in cancer pain and symptom management and by health promotion programs.

This study examined the relationship between moral distress, individual and professional values in oncology nurses.

Employing structural equation modeling, a descriptive-correlational study was conducted among 116 oncology nurses. Data were collected using the Moral Distress Scale-Revised Adult Nurses, the Nursing Professional Values Scale, and the Values Scale.

The mean moral distress frequency was evaluated as low (1.6 ± 0.7) and the intensity as moderate (1.9 ± 0.8). Both the Nursing Professional Values Scale and Values Scale subdimension mean scores were at levels evaluated as high. There was no specific value that stood out from the others. Structural equation modeling analysis showed that individual values were found to have a direct and negative significant effect on moral distress intensity (β = −0.70, p < 0.01) and frequency (β = −0.58, p <0.01) and professional values had a direct positive and significant effect on moral distress intensity (β = 0.37, p < 0.05) and frequency (β = 0.25, p < 0.05).

It is believed that more national and international studies need to be conducted to examine the relationship between the moral distress concept and values. While individual values were found to have a direct and negative significant effect on moral distress, professional values had a direct positive and significant effect on moral distress.

Measuring tools are essential in assessing the quality of care. This study aimed to evaluate the validity and reliability of the Turkish version of the Palliative Nursing Care Quality Scale (PNCQS-T) and the sociodemographic characteristics affecting the quality of care.

This methodological study, whose linguistic equivalence was confirmed by the translation/back translation method, was carried out with the participation of 209 nurses. Personal Information Form and PNCQS-T were used as data collection tools. Construct validity was determined by confirmatory factor analysis (CFA). Reliability was tested with internal consistency and item-total correlation coefficients.

Adaptation results showed that the Turkish version of the scale is adequate for linguistic and content validation. The Turkish adaptation’s original scale of 20 items was reduced to 18. As in the original scale, all items were combined under a single dimension in the Turkish adaptation. Modified CFA indicated a well-fitting model. PNCQS-T explained 42.1% of the total variance. Cronbach’s alpha value was 0.92. The lowest score obtained from the scale is 18; the highest score is 90. Higher scores indicated that the palliative care provided by nurses was of good quality.

The Turkish version of the PNCQS-T is reliable for assessing the quality of palliative care provided by nurses in Turkey.

To explore the expectations of Brazilian and German patients regarding metastatic cancer and palliative chemotherapy.

Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. The interviews were transcribed and analyzed using the thematic analysis approach to identify common themes. The sociodemographic data were collected using an instrument developed by the authors.

A total of 48 patients participated in the study (58% were Brazilian and 42% were German). Of all participants, 35% were men and 65% were women. The participants’ mean age was 41 years. The general idea captured from the interviewees’ speech was that their diseases were curable or “while there is chemotherapy, there is life”; thus, the data analysis enabled the elaboration of the central theme, entitled “Mistaken expectations of metastatic cancer patients regarding palliative chemotherapy: While there is chemotherapy, there is life,” with 5 subthemes, namely: (1) communication and expectations; (2) normal life; (3) the person behind the disease; (4) religiosity and spirituality; and (5) the fortitude to choose between continuing or discontinuing treatment.

Regardless of cultural aspects, patients with metastatic cancer on palliative chemotherapy tend to believe in the healing potential of treatments. Dividing expectations only into curable or incurable is insufficient, as even patients who have acknowledged the incurability of their disease expect to live, as long as they remain under treatment as if the disease did not exist.

The Necesidades Paliativas CCOMS-ICO© (NECPAL) screening tool was developed to identify patients in need of palliative care and has been used in Israel without formal translation, reliability testing, or validation. Because cultural norms significantly affect subscales such as social vulnerability and health-care delivery, research is needed to comprehensively assess the NECPAL’s components, adapt it, and validate it for an Israeli health-care setting. This study linguistically and culturally translated the NECPAL into Hebrew to examine cultural and contextual acceptability for use in the Israeli geriatric health sector. The newly adapted tool was measured for itemized and scale-level content validity, inter-rater reliability (IRR), and construct validity.

The NECPAL was back-translated and its content validated by a 5-member expert panel for clarity and relevance, forming the Israeli-NECPAL (I-NECPAL). Six health-care professionals used the I-NECPAL with 25 post-acute geriatric patients to measure IRR. For construct validity, the known-groups method was used, as there is no “gold standard” method for identifying palliative needs for comparison with the NECPAL. The known groups were 2 fictitious cases, predetermined of palliative need. Thirty health-care professionals, blinded to the predetermined palliative status, used the I-NECPAL to determine whether a patient needs a palliative-centered plan of care.

The findings point to acceptable content and construct validity as well as IRR of the I-NECPAL for potential inclusion as a tool for identifying geriatric patients in need of palliative care. Content-validity assessment brought linguistic changes and the exclusion of the frailty parameter from the annex of chronic diseases. The kappa-adjusted scale-level content-validity index indicated a high level of content validity (0.96). IRR indicated a high level of agreement (all parameters with an “excellent–good” agreement level). The sensitivity (0.93), specificity (0.17), positive predictive value (0.53), and negative predictive value (0.71) revealed how heavily the scale weighed upon the surprise question. These metrics are improved when removing the surprise question from the instrument.

Similar to other countries, the Israeli health-care system is regulated by policies that portray the local beliefs and culture as well as evidence-based practice. The decision about when to switch a patient to a palliative-centered plan of care is one such example. It is thus of utmost importance that only locally adapted and vigorously tested screening tools be offered to health-care providers to assist in this decision. The I-NECPAL is the first psychometrically tested palliative needs identification tool for use in the geriatric population in Israel, on both a scale and an itemized level. The results indicate that it can immediately replace the current unvalidated version in use. Further research is needed to determine whether all parts of the scale are relevant for this patient population.

Adult daughters concerned about getting breast cancer throughout their lives and required support because their mothers had breast cancer.

This article aims to examine the revised Information and Support Needs Questionnaire (ISNQ) and validate it in a Taiwanese community population comprising daughters of mothers with breast cancer.

Using convenience sampling, daughters of mothers with breast cancer were recruited and were separated into 2 samples (Sample 1, n = 102, and Sample 2, n = 118). First, we translated and modified the ISNQ to ensure cultural adaptation and formed ISNQ Chinese version (ISNQ-C). Second, we conducted an exploratory factor analysis using both samples to explore the ISNQ-C factor structure. Finally, we tested the criterion validity and known‐group validity of the ISNQ-C using Sample 2.

Thirty-two items addressing 5 factors were identified for the ISNQ‐C. Each factor had good internal consistency. The criterion validity was supported by significant correlations between the ISNQ‐C scores and scores on the impacts of an event, anxiety, and depression. Known‐group comparisons revealed that the group with deceased mothers reported significantly more unmet needs related to “releasing my anxiety” compared to the group where the mother was stable and undergoing regular follow-ups.

The ISNQ‐C demonstrated good reliability and validity in terms of assessing needs among daughters of mothers with breast cancer in Taiwan. Using this assessment tool before genetic counseling to target the individual needs of this population at risk for breast cancer would be helpful to provide personalized care.

This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians.

This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ).

Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient’s demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians’ inner conviction about the need of PS-ES.

Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey.

This was a methodological study conducted with 222 pediatric nurses. Data were collected using the information form for pediatric nurses and the “stress scale for nurses performing end-of-life care for children.” Content and construct validity, item analysis, confirmatory factor analysis and internal consistency were used to evaluate the data. The Global Pharmaceutical Regulatory Affairs Summit checklist was followed in this study.

The content validity index of the scale was 0.93. Item-total score correlation values ranged from 0.594 to 0.885. The 5-factor structure of the scale was confirmed as a result of confirmatory factor analysis. Factor loads were greater than 0.30, and fit indices were greater than 0.80. The Cronbach’s alpha coefficient of the Turkish version of the scale was 0.97.

The stress scale for nurses performing end-of-life care for children is a valid and reliable measurement tool for the Turkish sample. This scale facilitates the assessment of the stress levels of pediatric nurses who provide end-of-life care to children. Also, this scale can be used in interventional studies to improve the well-being of pediatric nurses.

This study examined potential predictors of persistent depressive symptoms in a cohort of seriously ill older adults (aged 65+ years) receiving home care services.

This was a retrospective cohort study using secondary data collected from the Resident Assessment Instrument for Home Care for all assessments completed between 2001 and 2020. The cohort included seriously ill individuals with depressive symptoms at baseline and who continued to have depressive symptoms on reassessment within 12 months (n = 8,304). Serious illness was defined as having severe health instability, a prognosis of less than 6 months, or a goal of care related to palliative care (PC) on admission to the home care program.

The mean age of the sample was 80.8 years (standard deviation [SD] = 7.7), 61.1% were female, and 82.1% spoke English as their primary language. The average length of time between assessments was 4.9 months (SD = 3.3). During that time, 64% of clients had persistent symptoms of depression. A multivariate logistic regression model found that language, pain, caregiver burden, and cognitive impairment were the most significant predictors of experiencing persistent depressive symptoms.

Persistent depressive symptoms are highly prevalent in this population and, left untreated, could contribute to the person experiencing a “bad death.” Some of the risk factors for this outcome are amenable to change, making it important to continually assess and flag these factors so interventions can be implemented to optimize the person’s quality of life for as long as possible.

The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data.

Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points.

The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure–related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points.

Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.

Timely, effective and personalized identification of the multidimensional needs in patients with advanced cancer are major goals of appropriate palliative care (PC) delivery. However, there is considerable variation in structures, processes, and patient demographics that might influence the intensity of end-of-life care. This study aims to characterize patterns in clinical and demographic characteristics at the inception point and their association with the intensity of care during the last month of life in advanced cancer patients assisted at home.

Cancer patients entered in home PC during 2020 in Italy were considered. The association between home PC services during the last month of life (primary outcome) and demographic data, performance status (Karnofsky Performance Score [KPS]), symptoms, and therapies at the entry was explored in this retrospective study.

Among 1,721 consecutive patients (919 in Centre-North and 802 in Centre-South Italy), patients from Centre-South were younger (p < 0.001), had worse KPS (p < 0.001), and shorter survival (p = 0.010). Patient age was inversely associated with the number of total/physician/nurses services during the last month of life (p < 0.001, p = 0.001, and p = 0.008, respectively). Patients with severe symptoms (asthenia, pain, and anxiety) at inception needed more PC services at the end of life (p = 0.026, p = 0.008, and p = 0.038, respectively). The distribution of workload differed according to the geographical area, with higher number of PC services provided by physicians (p < 0.001) in Centre-North and by nurses (p = 0.002) in Centre-South.

These findings highlight major disparity in access and nature of PC in a country with universal access to health services. Studies aimed at comparing PC models among different countries should pay attention to the local heterogeneity within each health-care system.