Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population.

We performed a secondary analysis of the cross-sectional population-based 19th Social-Cultural Changes survey. A random sample of 2,581 Dutch-speaking people aged 18–95, living in Flanders or Brussels, were contacted for participation in the survey between March and July 2014 using a stratified two-step sample. Differences between groups are described using Pearson chi-square tests and analysis of variance.

Response rate was 58.7% (1,515/2,581). Over a 12-month period, 7.6% of respondents provided family care for someone with a serious illness (n = 114). They were most often aged 55–74 (36.0%), women (57.9%), worked full-time (42.3%); 31.8% provided at least 10 h of family care each week. Family caregivers of people with serious illness, compared with family caregivers of people with other conditions, provided more medical and nursing care (33.3% vs. 22.5%, p = 0.027), and experienced a higher burden of family caregiving (p = 0.038) but a similarly high meaningfulness of family caregiving.

A considerable part of the adult working population provides family care for someone with serious illness. While family caregiving for someone with serious illness shows similarities with family caregiving for people with other conditions in terms of caregiver characteristics and the impact of caregiving on work-life balance and the meaning derived from it, it is also associated with increased burden.

The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity.

A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners.

There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner.

These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.

Cancer does affect not only the lives of the patients but also that of their spouses. The aims of this systematic review are to (i) explore the gender differences in the impact of caregiving for cancer on spousal caregivers, (ii) facilitate the conceptual understanding of gender differences in caregiving, and (iii) identify directions for future research and clinical practice targeting spousal caregivers.

A comprehensive search was conducted of the electronic databases of MEDLINE, PsycINFO, EBSCO, and CINAHL Plus for papers published in English between 2000 and 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were used to identify, select, appraise, and synthesize the studies.

A total of 20 studies from seven countries were reviewed. Findings of the studies were presented using the biopsychosocial model. Spousal caregivers of cancer patients suffered from physical, psychological, and socioeconomic morbidities, with female spousal caregivers reporting a higher level of distress. The gendered positioning of spousal caregivers in the societal context had further brought about over-responsibility and self-sacrifice among women.

The gendered positions of cancer spousal caregivers further illustrated the gender differences in the caregiving experiences and consequences. Health-care professionals in routine clinical practice should be proactive in identifying physical, mental, and social morbidities among cancer spousal caregivers, particularly female ones, and providing timely interventions. Health-care professionals should recognize the pressing need for empirical research, political engagement, and action plans to address the health status and health-related behaviors of patients’ spouses along the cancer trajectory.

Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders.

Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups (n = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically.

Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others.

Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.

Knowledge, beliefs, and attitudes toward palliative care (PC) constitute barriers to its access. Few studies have focused on the intrinsic relationship between these variables, and none has examined the relationship between them and self-care self-efficacy.

To examine the direct and indirect effects of self-care self-efficacy, knowledge, and beliefs on attitudes toward PC.

A cross-sectional predictive study was conducted. Self-care self-efficacy, knowledge, attitudes, and beliefs about PC were analyzed using information from the Health Information National Trends Survey (HINTS 5, cycle 2, 2018). Data from 1,162 participants were considered. Structural equation modeling (SEM) was used to represent the statistical mediation model with latent and observable variables.

The structural model presents positive coefficients indicating that self-care self-efficacy significantly predicts knowledge (β = 0.127, p < 0.001) and beliefs (β = 0.078, p = 0.023). Similarly, knowledge is associated with attitudes (β = 0.179, p < 0.001) and beliefs (β = 0.213, p < 0.001). The beliefs measure is also significantly related to attitudes (β = 0.474, p < 0.001). In addition, this structural multiple mediation model shows optimal goodness-of-fit indices: χ2/df = 3.49, CFI = 0.983, TLI = 0.976, RMSEA = 0.046 [90% CI: 0.037–0.056], SRMR = 0.038.

Self-care self-efficacy is significantly associated with knowledge and beliefs about PC, which in turn are related to each other. Altogether, these variables predict positive attitudes toward PC. Understanding the relationship between these variables is relevant for targeting-specific populations and designing timely strategies to improve access to PC.

Inflammation may contribute to the high prevalence of depressive symptoms seen in lung cancer. “Sickness behavior” is a cluster of symptoms induced by inflammation that are similar but distinct from depressive symptoms. The Sickness Behavior Inventory-Revised (SBI-R) was developed to measure sickness behavior. We hypothesized that the SBI-R would demonstrate adequate psychometric properties in association with inflammation.

Participants with stage IV lung cancer (n = 92) were evaluated for sickness behavior using the SBI-R. Concomitant assessments were made of depression (Patient Hospital Questionniare-9, Hospital Anxiety and Depression Scale) and inflammation [C-reactive protein (CRP)]. Classical test theory (CTT) was applied and multivariate models were created to explain SBI-R associations with depression and inflammation. Factor Analysis was also used to identify the underlying factor structure of the hypothesized construct of sickness behavior. A longitudinal analysis was conducted for a subset of participants.

The sample mean for the 12-item SBI-R was 8.3 (6.7) with a range from 0 to 33. The SBI-R demonstrated adequate internal consistency with a Cronbach's coefficient of 0.85, which did not increase by more than 0.01 with any single-item removal. This analysis examined factor loadings onto a single factor extracted using the principle components method. Eleven items had factor loadings that exceeded 0.40. SBI-R total scores were significantly correlated with depressive symptoms (r = 0.78, p < 0.001) and CRP (r = 0.47, p < 0.001). Multivariate analyses revealed that inflammation and depressive symptoms explained 67% of SBI-R variance.

The SBI-R demonstrated adequate reliability and construct validity in this patient population with metastatic lung cancer. The observed findings suggest that the SBI-R can meaningfully capture the presence of sickness behavior and may facilitate a greater understanding of inflammatory depression.

The aim of this methodological study was to test the validity and reliability of the Turkish version of the Family Inventory of Needs.

The universe of the study consisted of 300 family members of inpatients hospitalized in the palliative care units of four hospitals in northern Turkey between April 12, 2019 and December 30, 2019. The translation process was performed in multiple stages using the forward–backward translation model. The reliability of the Family Inventory of Needs was evaluated using the Cronbach α 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 Kaiser–Meyer–Olkin value of the Family Inventory of Needs was found to be 0.893. The items of the Family Inventory of Needs were found to explain 45.23% of the total variance in scores. The Turkish form of the scale consisted of the importance and fulfillment subdimensions, and had 19 items. The ICCs of the test–retest scores of the importance and fulfillment subdimensions of the Family Inventory of Needs were found to be, respectively, ICC = 1.000 and ICC = 0.730 with a positive, linear, and highly significant relationship between the scores. The item-total score correlation coefficients of the scale were found to vary between 0.920 and 0.908 in the importance subdimension, and between 0.930 and 0.922 in the fulfillment subdimension.

The Turkish version of the Family Inventory of Needs was found to be a valid and reliable measurement tool that can be safely used with the family members of Turkish inpatients.

The purpose of this study was to determine whether the presence of gynecologic malignancies predicts the likelihood of a tertiary palliative care unit hospital admission.

In this study, patients admitted to a specialized tertiary palliative care unit (TPCU) with gynecologic malignancies were compared to national and provincial death rates to determine if gynecologic malignancy predicts admission, and subsequent death, in a TPCU.

Eighty-two gynecologic cancer patients were admitted to our TPCU over the 5- year study period. Out of all cancer deaths in the TPCU, death from ovarian cancer was 3.7% compared with 2.4% (p = 0.0068) of all cancer deaths in Manitoba and 2.3% (p = 0.0043) of all cancer deaths in Canada. Cervical cancer accounted for 1.7% of all our patients deaths compared with 0.7% (p = 0.0001) provincially and 0.6% (p = 0.0001) nationally. Uterine cancer deaths were not significantly different from the provincial and national death rates, whereas vulvar and fallopian cancers were too rare to allow for statistical analysis.

Gynecologic cancers may be predictive of admission to a palliative care unit.

A Universal Health Coverage goal is to provide access to affordable palliative care to reduce disparities in end-of-life (EOL) outcomes. To assess progress toward this goal in Sri Lanka, our primary aim was to systematically assess differences in patients’ physical, psychological, social and spiritual outcomes, and their perceived quality of care by their socioeconomic status (SES).

As part of the multi-country APPROACH (Asian Patient Perspectives Regarding Oncology Awareness, Care and Health) study, we surveyed 199 patients with a stage IV solid malignant tumor and aged >21 years from the largest government cancer hospital in Sri Lanka. We assessed their physical (physical and functional well-being, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual outcomes and perceived quality of care (physician communication, nursing care, and coordination/responsiveness).

Low SES patients reported significantly lower physical and functional well-being, emotional well-being, spiritual well-being including meaning/peace and faith; and significantly higher symptom burden, anxiety and depressive symptoms compared with patients from high SES (p < 0.05 for all outcomes).

Results have implications regarding reducing barriers in access to appropriate palliative care and EOL care services to stage IV cancer patients from low SES in Sri Lanka.

The Schedule of Attitudes Toward Hastened Death (SAHD) has emerged as a valid and reliable tool to assess the wish to hasten death (WTHD) among patients diagnosed with advanced cancer; however, the instrument has never been culturally adapted and validated for patients in Mexico. This study sought to validate and abbreviate the SAHD tool for use among patients attending the Palliative Care Service of the Instituto Nacional de Cancerología in Mexico.

The SAHD was culturally adapted from a previously published validation in patients from Spain. Eligible patients included Spanish literate subjects treated as outpatients in the Palliative Care Service, with an Eastern Cooperative Oncology Group (ECOG) performance status of 0–3. Patients were asked to answer the Mexican version of SAHD (SAHD-Mx) instrument and the Brief Edinburgh Depression Scale (BEDS).

A total of 225 patients were included in the study. Median positive response in the SAHD-Mx was 2 (range 0–18). Positive correlation was identified between the SAHD-Mx scale and ECOG performance status (r = 0.188, p = 0.005), as well as BEDS (r = 0.567, p < 0.001). SAHD-Mx displayed strong internal consistency (alpha = 0.85) and adequate reliability from test–retest phone interviews (r = 0.567, p < 0.001). Using the confirmatory factor analysis model, a factor was identified and the number of items was reduced to 6, including items 4, 5, 9, 10, 13, and 18.

The SAHD-Mx emerges as an adequate tool, with appropriate psychometric characteristics, for assessing WTHD among patients diagnosed with cancer undergoing palliative care in Mexico. .

There is concern that hydroxyzine exacerbates delirium, but a recent preliminary study suggested that the combination of haloperidol and hydroxyzine was effective against delirium. This study examined whether the concomitant use of hydroxyzine and haloperidol worsened delirium in patients with cancer.

This retrospective, observational study was conducted at 2 general hospitals in Japan. The medical records of patients with cancer who received haloperidol for delirium from July to December 2020 were reviewed. The treatments for delirium included haloperidol alone or haloperidol combined with hydroxyzine. The primary outcome was the duration from the first day of haloperidol administration to the resolution of delirium, defined as its absence for 2 consecutive days. The time to delirium resolution was analyzed to compare the haloperidol group and hydroxyzine combination group using the log-rank test with the Kaplan–Meier method. Secondary outcomes were (1) the total dose of antipsychotic medications, including those other than haloperidol (measured in chlorpromazine-equivalent doses), and (2) the frequencies of detrimental incidents during delirium, specifically falls and self-removal of drip infusion lines. The unpaired t-test and Fisher’s exact test were used to analyze secondary outcomes.

Of 497 patients who received haloperidol, 118 (23.7%) also received hydroxyzine. No significant difference in time to delirium resolution was found between the haloperidol group and the hydroxyzine combination group (log-rank test, P = 0.631). No significant difference between groups was found in either chlorpromazine-equivalent doses or the frequency of detrimental incidents.

This study showed that the concomitant use of hydroxyzine and haloperidol did not worsen delirium in patients with cancer.