To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.

This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.

The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).

The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.

The aim of this study was to translate, culturally adapt, and psychometrically evaluate the Brazilian version of the “End-of-Life Professional Caregiver Survey” (BR-EPCS).

This is an observational cross-sectional study. The sample was composed of 285 Brazilian healthcare professionals who work or worked in the palliative care area. A minimum number of 280 participants were established, following the recommendation of 10 subjects for each instrument item. The European Organisation for Research and Treatment of Cancer — Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation. For the precise/reliable evaluation of factors measured by the BR-EPCS, Cronbach's alpha (α) and composite reliability coefficients were used. The factorial analyses were made by means of the exploratory structural equation modeling methods and confirmatory factor analysis. We have conducted a multiple linear regression analysis to evaluate the sociodemographic variables' capabilities in the result prediction measured by BR-EPCS factors.

The factorial analysis showed the relevance of two factors: Factor 1 — “Given care effectiveness” (18 items; Cronbach's α = 0.94; Composite Reliability = 0.95) and Factor 2 — “Mourning and ethical and cultural values” (10 items; Cronbach's α = 0.89; Composite Reliability = 0.88). Multiple linear regression analyses revealed that the working time, sex, palliative care training, and its own advance directives are predictors of the constructs assessed by the BR-EPCS.

The BR-EPCS is a reliable, valid, and culturally appropriate tool to identify the educational needs of healthcare professionals who work with palliative care. This instrument can be used for educational and research reasons.

We previously reported that the nurse-assisted screening and psychiatric referral program (NASPRP) facilitated the psychiatric treatment of depressive patients, but the high refusal rate was a problem even though referral was recommended by the nurse to all positively screened patients. We modified the program so that the nurses could judge the final eligibility of referral using the result of the screening. This study assessed if the modified NASPRP led to more psychiatric referral of depressive patients.

We retrospectively evaluated the annual change of the psychiatric referral proportion and compared the findings among the usual care term, the NASPRP term, and the modified NASPRP terms.

The referral proportions of the modified NASPRP terms were 4.4% and 3.9%. These were not significantly higher than the usual care term (2.5%), and significantly lower than the NASPRP term (11.5%).

The modified NASPRP did not facilitate psychiatric treatment of depressive patients and another approach is needed.

We sought to characterize patients’ preferences for the role of religious and spiritual (R&S) beliefs and practices during cancer treatment and describe the R&S resources desired by patients during the perioperative period.

A cross-sectional survey was administered to individuals who underwent cancer-directed surgery. Data on demographics and R&S beliefs/preferences were collected and analyzed.

Among 236 participants, average age was 58.8 (SD = 12.10) years; the majority were female (76.2%), white (94.1%), had a significant other or spouse (60.2%), and were breast cancer survivors (43.6%). Overall, more than one-half (55.9%) of individuals identified themselves as being religious, while others identified as only spiritual (27.9%) or neither (16.2%). Patients who identified as religious wanted R&S integrated into their care more often than patients who were only spiritual or neither (p < 0.001). Nearly half of participants (49.6%) wanted R&S resources when admitted to the hospital including the opportunity to speak with an R&S leader (e.g., rabbi; 72.1%), R&S texts (64.0%), and journaling materials (54.1%). Irrespective of R&S identification, 68.0% of patients did not want their physician to engage with them about R&S topics.

Access to R&S resources is important during cancer treatment, and incorporating R&S into cancer care may be especially important to patients that identify as religious. R&S needs should be addressed as part of the cancer care plan.

The spiritual well-being scale (SWBS) is a widely used clinical scale which should be evaluated for Iranian patients with cancer. The aim of this study is to evaluate the psychometric properties of the Persian version of the SWBS in Iranian patients with cancer.

This cross-sectional, methodological study was conducted among Iranian patients with cancer (n = 400). The participants were recruited using convenience sampling. The content, construct, convergent and discriminant validity, and reliability of the Persian version of the SWBS were evaluated.

A two-factor structure for the scale was indicated with the factors being: connecting with God and meaningless life that explained 54.18% of the total variance of the concept of spiritual well-being. The results demonstrated the model had a good fit. Cronbach's alpha, McDonald's omega, and the inter-item correlation values of the factors indicated good internal consistency of the scale.

These results suggest that the Persian version of the SWBS is a reliable and valid measure to assess the spiritual well-being of patients with cancer through 16 items related to connecting with God and meaningless life.

Cervical cancer is known to affect survivors’ intimate relationships, as well as their communication and coping. Yet little is known about the perspectives of these survivors on their intimate relationships in the context of their needs during and after medical treatment. Additionally, only a few studies have focused on survivors’ perceived needs or on existing psychosexual support. Understanding these perceptions can help provide a tailored response and improve dyadic interventions. The aim of this study was to examine cervical cancer survivors’ perspectives on their intimate relationships during and after their treatment.

The present study adopted a qualitative-phenomenological approach. In-depth, semi-structured interviews were conducted with 15 survivors of cervical cancer between the ages of 38 and 44 who were diagnosed at stages I–II and were treated with radiotherapy or chemo-radiotherapy and surgery. Data collection continued until saturation of concepts was reached. The results underwent thematic analysis.

Analysis of the findings revealed two key themes: (1) Together and apart in the shadow of cervical cancer. This theme focuses on the recovery period as a potential opportunity for changing and improving the couple relationship, such that men no longer withdraw but rather provide their partners with needed support and encouragement. (2) Changes in sexual life and couple intimacy. This theme focuses on changes in sexual relations, which have become a burden, painful, and something to avoid.

The study provides a comprehensive picture of intimate relationships during and after cervical cancer treatment and highlights the women's needs and desires for support from their intimate partners. The discussion notes that oncology providers can better facilitate supportiveness on the part of cervical cancer partners by offering better couple-oriented education and interventions to promote couple communication.

Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies.

This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool.

The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses.

More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients’ health literacy levels to address their advance care planning needs.

Meaninglessness is one of the most common psychological problems in cancer patients, which can lead to anxiety, depression and psychological distress, and diminished quality of life. Recent evidence indicates that meaning-centered group psychotherapy (MCGP) effectively enhances the meaning in life among cancer patients. This study aimed to evaluate the impact of MCGP on the meaning in life, post-traumatic growth, psychological distress, and fear of recurrence among Chinese cancer patients with a favorable prognosis.

Sixty-six cancer patients were randomly assigned to either the MCGP group (n = 33) or the control group (n = 33). Participants in the MCGP group underwent a 4-week, 8-session MCGP, while those in the control group received usual care. Meaning in life, post-traumatic growth, psychological distress, and fear of recurrence were assessed at both baseline and postintervention to evaluate the impact of the intervention. The intervention outcomes were analyzed using paired t-tests or analysis of covariance, as appropriate.

Patients in the MCGP group demonstrated significant improvements in meaning in life, post-traumatic growth, and fear of recurrence from baseline to postintervention. In comparison to the control group, the MCGP group displayed positive effects on meaning in life and post-traumatic growth following the intervention. However, no significant effects were observed in terms of psychological distress and fear of recurrence.

Our research offers evidence supporting the effectiveness of MCGP in enhancing meaning in life and post-traumatic growth among Chinese cancer patients with a favorable prognosis.

The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units.

Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021.

A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients’ comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care.

End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.

On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5–6, 2021.

Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses.

The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development.

Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

Persistent pain is common and inadequately treated in cancer patients. Behavioral pain interventions are a recommended part of multimodal pain treatments, but they are underused in clinical care due to barriers such as a lack of the resources needed to deliver them in person and difficulties coordinating their use with clinical care. Pain coping skills training (PCST) is an evidence-based behavioral pain intervention traditionally delivered in person. Delivering this training via the web would increase access to it by addressing barriers that currently limit its use. We conducted a patient pilot study of an 8-week web-based PCST program to determine the acceptability of this approach to patients and the program features needed to meet their needs. Focus groups with healthcare providers identified strategies for coordinating the use of web-based PCST in clinical care.

Participants included 7 adults with bone pain due to multiple myeloma or metastasized breast or prostate cancer and 12 healthcare providers (4 physicians and 8 advanced practice providers) who treat cancer-related bone pain. Patients completed web-based PCST at home and then took part in an in-depth qualitative interview. Providers attended focus groups led by a trained moderator. Qualitative analyses identified themes in the patient and provider data.

Patients reported strongly favorable responses to web-based PCST and described emotional and physical benefits. They offered suggestions for adapting the approach to better fit their needs and to overcome barriers to completion. Focus groups indicated a need to familiarize healthcare providers with PCST and to address concerns about overburdening patients. Providers would recommend the program to patients they felt could benefit. They suggested applying a broad definition of cancer pain and having various types of providers help coordinate program its use with clinical care.

Web-based PCST was acceptable to patients and providers. Our findings suggest that patients could benefit from this approach, especially if patient and provider barriers are addressed.

Adjusting to cancer is an ongoing process, yet few studies explore this adjustment from a qualitative perspective. The aim of our qualitative study was to understand how patients construct their experience of adjusting to living with cancer.

Qualitative analysis was conducted of written narratives collected from four separate writing sessions as part of a larger expressive writing clinical trial with renal cell carcinoma patients. Thematic analysis and constant comparison were employed to code the primary patterns in the data into themes until thematic saturation was reached at 37 participants. A social constructivist perspective informed data interpretation.

Interconnection described the overarching theme underlying the process of adjusting to cancer and involved four interrelated themes: (1) discontinuity—feelings of disconnection and loss following diagnosis; (2) reorientation—to the reality of cancer psychologically and physically; (3) rebuilding—struggling through existential distress to reconnect; and (4) expansion—finding meaning in interconnections with others. Participants related a dialectical movement in which disruption and loss catalyzed an ongoing process of finding meaning.

Our findings suggest that adjusting to living with cancer is an ongoing, iterative, nonlinear process. The dynamic interactions between the different themes in this process describe the transformation of meaning as participants move through and revisit prior themes in response to fluctuating symptoms and medical news. It is important that clinicians recognize the dynamic and ongoing process of adjusting to cancer to support patients in addressing their unmet psychosocial needs throughout the changing illness trajectory.

This article summarizes the findings from a 3-year independent evaluation of a regional Child Bereavement Service (CBS). The service was commissioned by a Primary Care Trust in Northern England, and funded by a British cancer charity, Macmillan Cancer Support. The need for a CBS was recognized by members of a Palliative Care Group who identified a gap in local services for bereaved children, who may be susceptible to short/long-term psychiatric/psychological disorders. The service was established to offer support for professionals working with bereaved children and their family.

Interventions provided by the service included pre/post bereavement support, individual work with the child and/or family, and group work. An evaluation (2004–2007), was conducted to inform service development utilizing semi-structured interviews with parents/carers of service users (n = 20), and semi-structured interviews with healthcare professionals (n = 8). Interviews were recorded, transcribed verbatim, and analyzed using grounded theory methods.

Referrals were higher than expected. Sixty per year were anticipated; however, in the first year alone, there were 255 referrals. Health and social care professionals who attended training courses, provided by the CBS staff, expressed confidence in providing bereavement support themselves, or by making appropriate referrals to the CBS. Parents and carers welcomed a service specifically for their children.

The CBS is a viable organization that supports bereaved children as expressed in this article.

The management of and prognosis for delirium are affected by its subtype: hypoactive, hyperactive, mixed, and none. The DMSS–4, an abbreviated version of the Delirium Motor Symptom Scale, is a brief instrument for the assessment of delirium subtypes. However, it has not yet been evaluated in an intensive care setting.

We performed a prospective/descriptive cohort study in order to determine the internal consistency, reliability, and validity of the relevant items of the DMSS–4 versus the Delirium Rating Scale–Revised-98 (DRS–R-98) and the original DMSS in a surgical intensive care setting.

A total of 289 elderly, predominantly male patients were screened for delirium, and 122 were included in our sample. The internal consistency of the DMSS–4 items was excellent (Cronbach's α = 0.92), and between the DMSS–4 and DRS–R-98 the overall concurrent validity was substantial (Cramer's V = 0.67). Within individual motor subtypes, concurrent validity remained at least substantial (Cohen's κ = 0.65–0.81) and sensitivity high (69.8 to 82.2%), in contrast to those of the no-motor subtype, with less validity and sensitivity (κ = 0.28, 22%). Similarly, total concurrent validity between the DMSS–4 and the original DMSS reached perfection (Cramer's V = 0.83), as did agreement between the subtypes (κ = 0.83–0.92), while sensitivity remained high (88.2–100%). Only in those with delirium with no-motor subtype was agreement moderate (κ = 0.56) and sensitivity lower (67%). Specificity was high across all subtypes (91.2–99.1%). The DMSS–4 yielded very sensitive ratings, particularly for hypoactive and hyperactive motor symptoms, and interrater agreement was excellent (Fleiss's κ = 0.83).

We found the DMSS–4 to be a most reliable and valid brief assessment of delirium in characterizing the subtypes of delirium in an intensive care setting, with increased sensitivity to hypoactive and hyperactive motor alterations.

The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services.

The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals).

Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding.

Two main themes addressing perceptions of current psychological provision emerged: “understanding psychological support” and “unmet psychological need.” Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems.

Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.

Our aim was to outline a procedure for obtaining a rapid autopsy in order to collect high-quality postmortem tissue for genomic analysis.

This report details a bi-institutional collaborative effort to coordinate a rapid autopsy for a pediatric patient who had died at home. We discuss the scientific rationale for offering a rapid autopsy to caregivers of pediatric patients as well as parental perspectives on broaching the subject of autopsy. We then review the logistics and coordination involved with planning a rapid autopsy and the sequence of events needed to maximize tissue quality.

We report the successful coordination of a rapid autopsy for a patient who died in a hospice setting at her out-of-state home. The time interval from death to the start of the rapid autopsy procedure was 4.5 hours, despite the logistical considerations demanded by the location of the patient. Tumor aliquots and nonneoplastic tissues were successfully snap frozen for downstream genomic studies.

Physicians should consider trialing a rapid autopsy program at their institution that could be offered to caregivers of pediatric patients. This case report offers a framework to help clinicians develop their own rapid autopsy programs as well as guidelines to help streamline this process for appropriate candidates going forward.