Recent increases in homophobic and transphobic harassment, hate crimes, anti-lesbian, gay, bisexual, transgender, gender nonconforming, and queer (LGBTQ+) legislation, and discrimination in healthcare toward LGBTQ+ persons require urgent attention.

This study describes seriously ill LGBTQ+ patients’ and partners’ experiences of discriminatory care delivered by healthcare providers.

Qualitative data from a mixed-methods study using an online survey were analyzed using a grounded theory approach. Seriously ill LGBTQ+ persons, their spouses/partners and widows were recruited from a wide range of organizations serving the LGBTQ+ community. Respondents were asked to describe instances where they felt they received poor care from a healthcare provider because they were LGBTQ+.

Six main themes emerged: (1) disrespectful care; (2) inadequate care; (3) abusive care; (4) discriminatory care toward persons who identify as transgender; (5) discriminatory behaviors toward partners; and (6) intersectional discrimination. The findings provide evidence that some LGBTQ+ patients receive poor care at a vulnerable time in their lives. Transgender patients experience unique forms of discrimination that disregard or belittle their identity.

Professional associations, accrediting bodies, and healthcare organizations should set standards for nondiscriminatory, respectful, competent, safe and affirming care for LGBTQ+ patients. Healthcare organizations should implement mechanisms for identifying problems and ensuring nondiscrimination in services and employment; safety for patients and staff; strategies for outreach and marketing to the LGBTQ+ community, and ongoing staff training to ensure high quality care for LGBTQ+ patients, partners, families, and friends. Policy actions are needed to combat discrimination and disparities in healthcare, including passage of the Equality Act by Congress.

Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences.

Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted.

Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred.

The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.

While dying at home is often described as desirable, to our knowledge, no reviews have focused specifically on people’s reasons for wanting to die at home. This review describes the breadth of what is known about motivations, attitudes, ideas, and reasons underlying the decision to choose “home” as one’s preferred placed of death.

This review was guided by a scoping review methodology following a five-stage approach including: (1) identify the research question, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize and report the results.

Seventeen articles were identified that met inclusion/exclusion criteria and discussed motivations underlying people’s desires to die at home. Thirty-five percent of studies were from Canada (n = 6/17), 29% were from Europe (n = 5/17), and 29% were from Asia (n = 5/17). Most studies (n = 11/17) used methods that involved collecting and/or analyzing interview data from participants, while the remaining studies (n = 6/17) used methods that involved administering and analyzing surveys or questionnaires. Characteristics of participants varied, but most commonly, studies included people with advanced illnesses who were nearing death (35% of studies, n = 6/17). Motivations for choosing a home death included desires to preserve a sense of self, factors relating to interpersonal relationships, and topics such as culture, religion, socioeconomic status, living situation, and lived experience.

The many interconnected reasons that lead people to choose a home death vary, as individuals have a range of motivations for choosing to die at home, which are highly influenced by contextual and cultural factors. Ultimately, this review will provide a comprehensive description of factors which may inform end-of-life planning, highlighting needs to be considered when planning the preferred location of a death.

This study aimed to refine the content of a new patient-reported outcome (PRO) measure via cognitive interviewing techniques to assess the unique presentation of depressive symptoms in older adults with cancer (OACs).

OACs (≥ 70years) with a history of a depressive disorder were administered a draft measure of the Older Adults with Cancer – Depression (OAC-D) Scale, then participated in a semi-structured cognitive interview to provide feedback on the appropriateness, comprehensibility, and overall acceptability of measure. Interviews were audio-recorded and transcribed, and qualitative methods guided revision of scale content and structure.

OACs (N = 10) with a range of cancer diagnoses completed cognitive interviews. Participants felt that the draft measure took a reasonable amount of time to answer and was easily understandable. They favored having item prompts and response anchors repeated with each item for ease of completion, and they helped identify phrasing and wording of key terms consistent with the authors’ intended constructs. From this feedback, a revised version of the OAC-D was created.

The OAC-D Scale is the first PRO developed specifically for use with OACs. The use of expert and patient input and rigorous cognitive interviewing methods provides a conceptually accurate means of assessing the unique symptom experience of OACs with depression.

Psychological and existential distress is prevalent among patients with life-threatening cancer, significantly impacting their quality of life. Psilocybin-assisted therapy has shown promise in alleviating these symptoms. This systematic review aims to synthesize the evidence on the efficacy and safety of psilocybin in reducing cancer-related distress.

We searched MEDLINE, APA PsycINFO, Cochrane database, Embase, and Scopus from inception to February 8, 2024, for randomized controlled trials (RCTs), open-label trials, qualitative studies, and single case reports that evaluated psilocybin for cancer-related distress. Data were extracted on study characteristics, participant demographics, psilocybin and psychotherapy intervention, outcome measures, and results. Two authors independently screened, selected, and extracted data from the studies. Cochrane Risk of Bias for RCTs and Methodological Index for Non-Randomized Studies criteria were used to evaluate study quality. This study was registered with PROSPERO (CRD42024511692).

Fourteen studies met the inclusion criteria, comprising three RCTs, five open-label trials, five qualitative studies, and one single case report. Psilocybin therapy consistently showed significant reductions in depression, anxiety, and existential distress, with improvements sustained over several months. Adverse effects were generally mild and transient.

This systematic review highlights the potential of psilocybin-assisted therapy as an effective treatment for reducing psychological and existential distress in cancer patients. Despite promising findings, further large-scale, well-designed RCTs are needed to confirm these results and address existing research gaps.

This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.

This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.

There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.

The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers’ caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.

To describe the frequency of prognostic awareness (PA) in a population of advanced cancer patients in a Latino community and to explore the relationship between accurate PA with emotional distress and other covariates.

In this cross-sectional study performed in Puente Alto, Chile, advanced cancer patients in palliative care completed a survey that included a single question to assess PA (Do you believe your cancer is curable? yes/no). Patients reporting that their cancer was not curable were considered as having accurate PA. Demographics, emotional distress, quality of life, and patient perception of treatment goals were also assessed. Analyses to explore associations between PA and patient variables were adjusted.

A total of 201 patients were included in the analysis. Mean age was 65, 50% female. One hundred and three patients (51%) reported an accurate PA. In the univariate analysis, accurate PA was associated with not having a partner (p = 0.012), increased emotional distress (p = 0.013), depression (p = 0.003), and were less likely to report that the goal of the treatment was to get rid of the cancer (p < 0.001). In the multivariate analysis, patients with accurate PA had higher emotional distress or depression, were less likely to have a partner, and to report that the goal of the treatment was to get rid of the cancer.

Half of a population of Latino advanced cancer patients reported an accurate PA. Accurate PA was associated with increased emotional distress, which is similar to what has been reported in other countries. Weaknesses in prognostic disclosure by clinicians, local cultural factors, or higher motivation to seek prognostic information among distressed cancer patients could explain this association. Strategies to emotionally support patients when discussing prognostic information should be implemented.

Patients with cancer benefit greatly from receiving palliative care (PC), improving their overall survival and quality of life. Despite its benefits, PC is underutilized among patients with hematologic malignancies (HMs), particularly among Black patients, who face higher symptom burdens and lower survival rates compared to White patients. The purpose of this review was to identify and describe what is known about PC use among Black HM patients in the United States.

This review was conducted using the Joanna Briggs Institute approach for scoping reviews and included a search of the databases MEDLINE (PubMed), Embase (Elsevier), Scopus and Web of Science (Clarivate). The search was developed and conducted by a professional medical librarian in consultation with the author team and focused on keywords such as Black/African American patients, HM, and PC. Articles were screened and selected based on predefined inclusion criteria and carried out using Covidence software for systematic review management.

Seven publications were included in the final sample and most used quantitative methods and data from large national databases such as the National Cancer Database. Four of the studies reported that Black patients with HM were less likely to receive or use PC compared to White patients. Access to PC was associated with better outcomes, such as lower hospital charges and a reduced likelihood of dying within 30 days of initiating palliative radiotherapy.

This scoping review highlights ongoing inequities in the use of PC among Black patients with HM which mirrors trends in patients with solid cancers. Future studies should be conducted to understand the determinants of these disparities and to also build testable interventions to improve PC use within this underserved population.

Palliative care services are unavailable for the vast majority of children in Bhutan. Children’s palliative care has not been incorporated into training programs for health professions, leading to limited knowledge and awareness of how best to support children facing serious or life-threatening conditions.

To describe the impact of the Project ECHO children’s palliative care course on participants’ knowledge, comfort, and attitudes and to evaluate the overall acceptability of an online training to support palliative care training in Bhutan.

Before-and-after surveys of program participants were conducted, assessing changes in knowledge, comfort, and attitudes. Participants’ overall experiences and acceptability of the learning program were assessed through an end-of-program survey.

Participants were primarily nurses (49%) or physicians (34%). Most participants (68%) worked in pediatric and/or neonatal care. Participants’ knowledge of core palliative care concepts improved significantly between the beginning and end of the course. Participants’ comfort and attitudes toward palliative care also improved, with significance effect sizes in most domains (11/18). Satisfaction with the program was high, with 100% of participants agreeing that the training was applicable to their clinical practice. Although most participants (56%) identified a personal need for additional clinical training to support practice change.

Project ECHO can be used to deliver palliative care education, with improved palliative care knowledge, comfort, and attitudes among program participants. A short online training program can generate interest in palliative care, which can be leveraged to further develop palliative care services in settings where palliative care is currently unavailable.

Breast cancer is the leading cancer in Ghana, Africa, accounting for 31% of all cancers in women. The effects of breast cancer are not limited to the woman but also impact the spouse’s anxiety, depressed mood, and coping behavior. Helping Her Heal (HHH)-Ghana is a culturally adapted evidenced-based intervention with potential to improve health outcomes of spouse caregivers.

The purpose of the study was to ascertain the feasibility, acceptability, and short-term impact of HHH-Ghana, a culturally adapted evidenced-based intervention for spouses of women with breast cancer in Ghana.

The study used a single group pre–post design. Participants (n = 14) were recruited from medical care providers and were eligible if they were spouse caregivers of wives with Stage I, II, or III breast cancer, were 18 years or older, and had been living with their wives for at least 6 months. Data were obtained by spouse self-report on standardized measures of depressed mood, anxiety, self-care skills, self-efficacy to support their wife, self-efficacy to carry out their own self‐care, and the quality of marital communication about breast cancer. Exit interviews were additionally obtained to describe the gains spouses attributed to their participation in the study.

The HHH-Ghana study was feasible and acceptable. Spouses actively engaged in each intervention session and completed the at-home assignments; retention was 87.5%. Spouses significantly improved on standardized measures of anxiety (p = 0.010), depressed mood (p = 0.002), self-care skills (p = 0.006), and their self-efficacy in supporting their wife (p = 0.001) and in carrying out their own self-care (p = 0.011). Although there was no statistically significant change in marital communication, spouses reported in their exit interviews that the intervention enabled them to communicate better and be more attentive listeners to their wives.

Results warrant a larger clinical trial in Ghana.

Research on grief among family caregivers of individuals with dementia has seen a notable increase. Our objective was to synthesize the relationship between coping factors and pre-death grief (PDG).

(Prospero protocol: CRD42024560208) We conducted a systematic review of literature from PubMed, Web of Science, Scopus, PsycInfo, and Medline up to July 2024. Included studies encompassed quantitative, qualitative, and mixed methods approaches. During the study selection process, we excluded data on intervention effectiveness and studies not published in English. The quality of the studies was evaluated using the Mixed Methods Appraisal Tool. Evidence was summarized narratively.

Participants in this study are family caregivers who take care of dementia patients.

We included data from 12 studies in our analysis. The majority of these investigations were carried out in Western countries. The research primarily involved spousal or adult child caregivers and centered on PDG. We included validated measures of PDG in each study.

Among the reviewed studies, five reported on coping strategies, while seven addressed coping resources. Overall, the findings indicated that the application of coping strategies, specifically positive coping strategies, is effective in alleviating PDG and mitigating the effects of caregiving burden on PDG. Coping resources – including self-efficacy, sense of coherence, and support from friends and family – appear to have a beneficial impact in reducing PDG. Additionally, the quality of relationships with friends and family members was found to be a significant factor. Moreover, spiritual and religious beliefs, along with community faith, have been identified as crucial elements in alleviating grief experienced by caregivers.

Knowing what coping strategies and resources are beneficial to decrease PDG experiences among dementia caregivers.

The use of palliative care (PC) services from people of Islamic faith is seen limited. There are a fundamental lack of PC services appropriate to the target group and a lack of knowledge and acceptance. The transition from curative to PC is often perceived as problematic. Factors influencing PC use and end-of-life (EOL) decisions and preferences among people of Islamic faith are largely unclear.

A scoping review was carried out using the methodology of the Joanna Briggs Institute. Studies of any design, published in English, German, or Arabic, and published by the end of August 2022, were eligible for inclusion. The systematic literature search was conducted in MEDLINE via PubMed, CINAHL, Cochrane Library, and Web of Science. Study statements were analyzed with a clear distinction between PC as EOL care and other EOL decisions, such as euthanasia, withdrawal, or withholding of one or more life-sustaining treatments or medications.

Sixty studies published between 1998 and 2022 were included. Only a few studies made statements about EOL care. The majority of studies focused on forms of euthanasia and indicated negative attitudes toward euthanasia, assisted suicide, and some other EOL decisions. Reasons for rejection include theological arguments, ethical and moral considerations, and others. Reasons for acceptance were principles of good death and dying, medical justifications, and others. The following barriers to the use of PC were identified laws and policies, lack of necessary resources, cultural norms and values, structure of the health-care system, communication and interaction between patients, relatives, and health-care staff, and others.

This review identifies the preferences for and difficulties in making EOL decisions and identifies barriers to specific PC for the Muslim population. Findings suggest how these barriers might be overcome.

Motor neurone disease (MND) results in complex and disabling symptoms that give rise to significant and challenging care needs. While much of the care required is typically provided by the partner of the individual who has been diagnosed with MND, there are few studies that have investigated the impact of MND on the couple’s relationship.

To establish the current state of the research literature examining the impact of MND on the couple’s relationship.

A scoping review was undertaken with thematic analysis used to synthesize the data.

The scoping review identified 15 studies that were thematically analyzed to identify prominent themes. The following 5 themes were identified: adjusting to new roles; changes in communication and values; spouse well-being and health; and changes to social relationships and intimacy changes.

This scoping review highlighted the impact of the MND trajectory on the couple’s relationship overall and on key areas of couple communication and functioning. These areas can be used to guide the development of interventions and services that are tailored to the needs of couple relationships. Further understanding of the factors impacting the couple’s relationship on the MND journey and how to navigate these factors is critically warranted.