Male rectal and anal cancer patients demonstrate high rates of sexual dysfunction. This pilot randomized controlled trial tested a psychoeducational intervention designed to improve psychosexual adjustment.

Rectal or anal cancer patients were randomized to a Sexual Health Intervention for Men (intervention) or to a referral and information control (control). The intervention included control activities plus 4 sexual health intervention sessions every 4–6 weeks and 3 brief telephone calls timed between these sessions. Assessments were completed pre-intervention (baseline) and 3 months (follow-up 1) and 8 months (follow-up 2) post-intervention. Differences were assessed with statistical significance and Cohen’s d effect sizes (d = 0.2, small effect; d = 0.5, moderate effect; d = 0.8, large effect).

Ninety subjects enrolled. Forty-three participants completed at least 1 follow-up assessment (intervention, n = 14; control n = 29). At follow-up 1, men in intervention, compared to control, improved on all domains of the International Index of Erectile Function (IIEF) (p < 0.001 to p < 0.05) and demonstrated large effects (d = 0.8 to d = 1.5). Similarly, at follow-up 2, changes in all domains of the IIEF except the orgasm domain were either statistically significant or marginally statistically significant (p = 0.01 to p = 0.08) and demonstrated moderate to large treatment effects for intervention versus control (d = 0.5 to d = 0.8). Men in the intervention, compared to control, demonstrated decreased sexual bother at follow-up 1 (p = 0.009, d = 1.1), while Self-Esteem and Relationship (SEAR) total scores and the SEAR sexual relationship subscale demonstrated moderate increases for intervention versus control (d = 0.4 to d = 0.6).

This study provides initial evidence for combining a psychoeducational intervention with medical interventions to address sexual dysfunction following rectal and anal cancer. Trials register number: NCT00712751 (date of registration: 7/10/2008).

The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death.

This qualitative study obtained interview data from N = 44 5–18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology.

Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country.

This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs’ psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs’ lived experiences.

We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews.

AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences.

Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools.

The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool.

Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified “family relationships,” “global pain,” and “family roles and accomplishments” as being of most importance to patients.

The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient–caregiver and patient–HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

Given the many statistical analysis options used for randomized controlled trials (RCTs) of behavioral interventions and the lack of clear guidance for analysis selection, the present study aimed to characterize the predominate statistical analyses utilized in RCTs in palliative care and behavioral research and to highlight the relative strengths and weaknesses of each of these methods as guidance for future researchers and reform.

All RCTs published between 2015 and 2021 were systematically extracted from 4 behavioral medicine journals and analyzed based on prespecified inclusion criteria. Two independent raters classified each of the manuscripts into 1 of 5 RCT analysis strategies.

There was wide variation in the methods used. The 2 most prevalent analyses for RCTs were longitudinal modeling and analysis of covariance. Application of method varied significantly by sample size.

Each statistical analysis presents its own unique strengths and weaknesses. The information resulting from this research may prove helpful for researchers in palliative care and behavioral medicine in navigating the variety of statistical methods available. Future discussion around best practices in RCT analyses is warranted to compare the relative impact of interventions in a more standardized way.

In 2018, a study was conducted in the Eastern and South-eastern Europe and Central Asia. National leaders of palliative care were asked to describe developments in postgraduate education in their region. They were asked whether the introduction of a European curriculum would be useful in their country. The aim was to explore the structures of postgraduate education at country level in order to define the barriers and opportunities.

This is an ethnographic study based on semi-structured field interviews. A thematic analysis was chosen for data extraction and a narrative synthesis for the systematic presentation and critical discussion of the results.

Thirty-two interviews were recorded in 23 countries. The analysis revealed 4 main themes: (1) general barriers to access, (2) necessary to improve palliative care education, (3) palliative care core curriculum – the theoretical framework, and (4) challenges in implementation. These main themes were complemented by 19 subthemes.

Palliative care is understood as a universal idea, which in practice means accepting social pluralism and learning to respect unique individual needs. This makes teaching palliative care a very special task because there are no golden standards for dealing with each individual as they are. In theory, a European curriculum recommendation is useful to convince governments and other key stakeholders of the importance of postgraduate education. In practice, such a curriculum needs to be adapted to the constraints of health services and human resources. Validated quality assessment criteria for palliative care education are crucial to advance postgraduate education.

Palliative sedation (PS) is an intrusive measure to relieve patients at the end of their life from otherwise untreatable symptoms. Intensive discussion of the advantages and limitations of palliative care with the patients and their relatives should precede the initiation of PS since PS is terminated by the patient’s death in most cases. Drugs for PS are usually administered intravenously. Midazolam is widely used, either alone or in combination with other substances. PS can be conducted in both inpatient and outpatient settings; however, a quality analysis comparing both modalities was missing so far.

This prospective observational study collected data from patients undergoing PS inpatient at the palliative care unit (PCU, n = 26) or outpatient at a hospice (n = 2) or at home (specialized outpatient palliative care [SAPV], n = 31) between July 2017 and June 2018. Demographical data, indications for PS, and drug protocols were analyzed. The depth of sedation according to the Richmond Agitation Sedation Scale (RASS) and the degree of satisfaction of staff members and patient’s relatives were included as parameters for quality assessment.

Patients undergoing PS at the PCU were slightly younger compared to outpatients (hospice and SAPV combined). Most patients suffered from malignant diseases, and midazolam was the backbone of sedation for inpatients and outpatients. The median depth of sedation was between +1 and −3 according to the RASS with a trend to deeper sedation prior to death. The median degree of satisfaction was “good,” scored by staff members and by patient’s relatives. Significant differences between inpatients and outpatients were not seen in protocols, depth of sedation, and degree of satisfaction.

The data support the thesis that PS is possible for inpatients and outpatients with comparable results. For choosing the best place for PS, other aspects such as patient’s and relative’s wishes, stress, and medical reasons should be considered.

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.

The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient’s death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver’s meaning-making that occurred after the patient’s death.

In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver’s perspective before and after the death of the patient. Thematic content analysis method was conducted.

A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers’ recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, “Have I done enough?,” Significance in the timing of events, and Gaining strength and personal growth.

The deathbed is a salient time for family caregivers as they prepare for patient’s death. There are opportunities to provide support to the family based on the study findings.

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.

Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.

Ambispective study with the participation of 14 PPCT working in Spain.

From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years’ experience (66.7% vs. 45.5%, p = 0.018).

PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables.

A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions.

A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy.

This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.

Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement.

The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient’s death.

The model selection chose 4 demographic and 4 preloss variables: family member’s nervousness and stress, the patient’s sense of security during palliative care, family members’ sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members’ continuing bond – internalized and continuing bond – externalized.

How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

Sleep disturbances are common among adult patients with cancer and their caregivers. To our knowledge, no sleep intervention to date has been designed to be provided to both patients with cancer and their caregivers simultaneously. This single-arm study aimed to pilot test the feasibility and acceptability, and to illustrate the preliminary efficacy on sleep efficiency of the newly developed dyadic sleep intervention, My Sleep Our Sleep (MSOS: NCT04712604).

Adult patients who were newly diagnosed with a gastrointestinal (GI) cancer and their sleep-partner caregivers (n = 20 persons: 10 dyads, 64 years old, 60% female patients, 20% Hispanic, 28 years relationship duration), both of whom had at least mild levels of sleep disturbance (Pittsburgh Sleep Quality Index [PSQI] ≥ 5) participated in this study. MSOS intervention consists of four 1-hour weekly sessions delivered using Zoom to the patient–caregiver dyad together.

We were able to enroll 92.9% of the eligible and screened patient–caregiver dyads within 4 months. Participants reported high satisfaction in 8 domains (average 4.76 on a 1–5 rating). All participants agreed that the number of sessions, interval (weekly), and delivery mode (Zoom) were optimal. Participants also preferred attending the intervention with their partners. Both patients and caregivers showed improvement in sleep efficiency after completing the MSOS intervention: Cohen’s d = 1.04 and 1.47, respectively.

Results support the feasibility and acceptability, as well as provide the preliminary efficacy of MSOS for adult patients with GI cancer and their sleep-partner caregivers. Findings suggest the need for more rigorous controlled trial designs for further efficacy testing of MSOS intervention.

Since 2015, the Harvard Workshop on Research Methods in Supportive Oncology has trained early-career investigators in skills to develop rigorous studies in supportive oncology. This study examines workshop evaluations over time in the context of two factors: longitudinal participant feedback and a switch from in-person to virtual format during the COVID pandemic.

We examined post-workshop evaluations for participants who attended the workshop from 2015 to 2021. We qualitatively analyzed evaluation free text responses on ways in which the workshop could be improved and “other comments.” Potential areas of improvement were categorized and frequencies were compiled longitudinally. Differences in participants' ratings of the workshop and demographics between in-person and virtual formats were investigated with t-tests and Chi-square tests, respectively.

286 participants attended the workshop over 8 years. Participant ratings of the workshop remained consistently high without substantial variation across all years. Three main themes emerged from the “other comments” item: (1) sense of community; (2) passion and empowerment; and (3) value of protected time. Participants appeared to identify fewer areas for improvement over time. There were no significant differences in participant ratings or demographics between the in-person and virtual formats.

While the workshop has experienced changes over time, participant evaluations varied little. The core content and structure might have the greatest influence on participants’ experiences.

Since the onset of COVID-19 pandemic, additional risk factors affecting family caregivers’ mental health have arisen. Therefore, personal stress coping strategies and family dynamics became important factors in reducing the impact of the pandemic on family caregivers’ mental health. The present research aimed to estimate the association between COVID-19 stressors and family caregiving burden. Moreover, moderating effects of emotion dysregulation and family functioning on this association were investigated.

This study analyzed data collected in April 2021 from 154 family caregivers (Mage = 38.79, SDage = 9.36, range = 22–64) recruited through Amazon’s Mechanical Turk (MTurk). The impact of COVID-19 stressors on family caregiving burden was tested, and moderating impacts of emotion dysregulation and family functioning were also investigated.

Both COVID-19 stress exposure and stress appraisal were positively associated with family caregiving burden. Emotion dysregulation and problematic family functioning were also positively associated with family caregiving burden. A significant moderating effect of emotion dysregulation was found, such that family caregivers with higher emotion dysregulation were likely to feel more caregiving burden when they experienced more COVID-19 stressors.

The current research highlighted the role of emotion regulation in reducing the negative impact of COVID-19 stressors on family caregiving burden. The research also emphasizes the need for intervention programs to improve emotion regulation strategies to decrease family caregiving burden during the pandemic.