Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that, so far, is considered always fatal. Treatments mainly consist in increasing survival and aim to improve the quality of life of people with ALS (pwALS). Social support and spirituality have been shown to play a key role in pwALS’ quality of life. Our study explored it in depth by investigating the underlying mechanisms linking social support, spirituality, and emotional well-being.

Thirty-six pwALS underwent a battery of tests evaluating emotional well-being (emotional well-being scale of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire), social support (6-item Social Support Questionnaire), and spiritual well-being (12-item Functional Assessment of Chronic Illness Therapy – Spiritual well-being). Our recruitment was web-based through the FILSLAN and the ARSLA websites as well as through Facebook® advertisements (ALS groups). Data were analyzed by Pearson correlation analysis and Process macro was used in an SPSS program to analyze the mediator variable effect.

Availability of social support, spiritual well-being, and 2 of its dimensions, i.e., meaning and peace, were positively correlated with emotional well-being. The mediational analyses showed that spiritual well-being, meaning, and peace act as mediators in the association between availability of social support and good emotional well-being.

Availability of social support and spirituality are essential for the emotional well-being of pwALS. Spirituality as a mediator between availability of social support and emotional well-being appears as real novel finding which could be explored further. Spiritual well-being, meaning, and peace appear as coping resources for pwALS. We provide practical guidance for professionals working with pwALS.

The evaluation of the quality of life (QoL) of patients with colorectal cancer (CRC) is an essential measure to measure the impact of the disease and treatments on the lives of patients. However, in Latin America there is no validated and reliable instrument to assess this construct.

This study aims to validate the EORTC QLQ-CR29 instrument in the Mexican population with CRC.

This study aims to validate the EORTC QLQ-CR29 instrument in the Mexican population with CRC. The study used an instrumental design and a nonprobabilistic sample due to availability, made up of 251 patients with CRC, with an average age of 54.7 ± 12.28 years. Exploratory and confirmatory factor analyses were performed, as well as concurrent validity tests.

The exploratory factorial analysis yielded 4 factors that explained 51.64% of the variance, with a Cronbach reliability coefficient of .766 and an Omega index of .725. The confirmatory factor analysis indicated that the proposed theoretical model fits the data almost perfectly, with an error close to 0, which shows that it is a balanced and parsimonious instrument to measure the QoL of the patients with CRC.

The EORTC QLQ-CR29 instrument proved to be a valid and reliable instrument for use in clinical care and research directed at patients with CRC in Mexico. Its use is recommended by multidisciplinary health teams in oncology in Mexico, since it allows knowing the patient’s perspective on the impact of CRC on their life, guiding therapeutic decision-making and being a primary outcome measure.

An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents’ views of their adolescent’s behavioral response to their advanced cancer or what the parent did to interpret or manage that response.

To describe patient-reported concerns about their adolescent and how they responded to their adolescent’s behavior.

Single occasion interviews were administered to 6 adolescent-rearing parents with Stage IV cancer. Interviews were analyzed using inductive content analysis by trained coders. Trustworthiness of results was protected through peer debriefing, coding to consensus, and maintaining an audit trail.

The core construct that explained study data was Being There without Taking Over, comprised of 4 domains: Struggling to Read My Child, Attempting to Talk with My Child about My Cancer, Trying to Maintain Optimism, and Understanding My Child.

Parents were deeply concerned about the impact of their advanced cancer on their adolescent but were unable to distinguish between cancer-related distress and adolescent angst. They feared initiating cancer-related discussions and struggled with their own feelings of guilt and parental inadequacy but did not turn to professionals for help.

Adolescent-rearing patients with advanced disease need to be triaged into services that offer a framework from which parents can interpret their child’s behavior and learn ways to have adolescent-appropriate conversations about the cancer. Such services should also help parents gain skills to manage feelings of parental inadequacy and guilt. In the absence of services, parents struggle and do not know how to interpret and respond to their adolescent’s cancer-related behavior.

Critical illness is associated with multiple undesired impacts, including residual psychological distress, frequently associated with recollections of critical illness. Dignity-related distress is highly prevalent among the one-fifth of critically ill patients who are alert. The distress may be associated with unpleasant recollections of care. We examined whether patients at risk for dignity-related distress had recall of their reported distress approximately 1 week after assessment and whether this recall differed from another high-risk group, specifically patients undergoing dialysis for end-stage renal disease.

The prospective cohort study included patients with critical illness and patients with end-stage renal disease enrolled from intensive care units (ICUs) and dialysis units at 1 academic center. Distress was assessed using the Patient Dignity Inventory (PDI). Participants received in-patient or telephonic follow-up 7–10 days after the initial interaction. Follow-up encounters focused on recollection of key aspects of the interpersonal interaction as well as the content of the PDI.

A total of 32 critically ill patients participated in initial assessment and follow-up. In total, 26 dialysis patients participated in both phases. The groups’ demographics differed. Fifty percent (n = 16) of critically ill patients and 58% (n = 15) of dialysis patients reported a mean score per item of >1.6, corresponding with severe distress on the PDI. Among the ICU patients, the 95% upper 2-sided confidence interval for the median level of recall was commensurate with the participant having had no recall of the initial interview beyond remembering that there was an interview. The end-stage renal disease group did not demonstrate significantly better recall.

Dignity-related distress is high in both critically ill patients and those with end-stage renal disease; however, recollection of assessment is poor in both groups. Any intervention designed to mitigate dignity-related distress will need either to be immediately deployable or not to be reliant upon recollection for impact.

In Chinese culture, family members are the main decision maker on end-of-life (EoL) issues for patients with advanced cancer. Yet little is known about Chinese families’ confidence in making EoL decisions and its associated factors. This study aims to investigate the status and associated factors of Chinese family members’ confidence in making EoL decisions for patients with advanced cancer.

This cross-sectional study used a convenience sample of 147 family members of patients with stage III or stage IV cancer from a tertiary cancer center in Guangzhou, China. The questionnaires included demographic information of patients and their family members, patients’ EoL preferences, and the Chinese version of the Family Decision-Making Self-Efficacy (FDMSE) Scale.

A total of145 family members (98.64%) completed the questionnaires. The average score of FDMSE was 3.92 ± 0.53. A multiple regression analysis showed that the factors associated with FDMSE included patients’ duration of disease, health insurance, participation in EoL decision-making, the expression of unfilled wishes, and family members’ employment status.

Chinese family members were not confident enough in making EoL decisions for patients with advanced cancer. It is recommended to develop cultural-tailored advanced care planning models to clarify patient preferences and to enhance the family members’ self-efficacy in making EoL decisions with or for patients with advanced cancer.

Palliative care access in Nepal is severely limited, with few health-care providers having training and skills to pain management and other key aspects of palliative care. Online education suggests an innovation to increase access to training and mentoring, which addresses common learning barriers in low- and middle-income countries. Project ECHO (Extensions for Community Health Care Outcomes) is a model of online education which supports communities of practices (COPs) and mentoring through online teaching and case discussions. The use of online education and Project ECHO in Nepal has not been described or evaluated.

An online course, consisting of 14 synchronous weekly palliative care training sessions was designed and delivered, using the Project ECHO format. Course participants included health-care professionals from a variety of disciplines and practice settings in Nepal.

The goal of this study was to evaluate the impact of a virtual palliative care training program in Nepal on knowledge and attitudes of participants.

Pre- and post-course surveys assessed participants’ knowledge, comfort, and attitudes toward palliative care and evaluated program acceptability and barriers to learning.

Forty-two clinicians, including nurses (52%) and physicians (48%), participated in program surveys. Participants reported significant improvements in their knowledge and attitudes toward core palliative care domains. Most participants identified the program as a supportive COP, where they were able to share and learn from faculty and other participants.

Project ECHO is a model of online education which can successfully be implemented in Nepal, enhancing local palliative care capacity. Bringing together palliative care local and international clinical experts and teachers supports learning for participants through COP. Encouraging active participation from participants and ensuring that teaching addresses availability and practicality of treatments in the local health-care context addresses key barriers of online education.

This study describes a model of structured virtual learning program, which can be implemented in settings with limited access to palliative care to increase knowledge and attitudes toward palliative care. The program equips health-care providers to better address serious health-related suffering, improving the quality of life for patients and their caregivers. The program demonstrates a model of training which can be replicated to support health-care providers in rural and remote settings.

To explore the learning experiences of participants (learners and teachers), in a yearlong tele-teaching and mentoring program on pediatric palliative care, which was conducted using the Project ECHO (Extension for Community Healthcare Outcomes) model and consisted of 27 teaching and clinical case discussion sessions for palliative medicine residents in India and Bangladesh. The goal of the study is to explore how participation and learning is motivated and sustained for both residents and teachers, including the motivators and challenges to participation and learning in a novel online format.

Qualitative interviews with ECHO participants, including learners and teachers were conducted. Interviews were recorded and transcribed. Thematic analysis of interview data was conducted within an interpretive description approach.

Eleven physicians (6 residents, 5 teachers) participated in interviews. Key elements of the ECHO program which participants identified as supporting learning and participation include small group discussions, a flipped classroom, and asynchronous interactions through social media. Individual learner characteristics including effective self-reflection and personal circumstances impact learning. Providing opportunities for a diverse group of learners and teachers, to interact in communities of practice (COP) enhances learning. Three major themes and 6 subthemes describing learning processes were identified. Themes included (1) ECHO program structure, (2) learner characteristics, and (3) COP. Subthemes included flipped classroom, breakout rooms, learning resources, personal circumstances, self-awareness of learning needs, and community interactions.

Project ECHO suggests a novel model to train health providers, which is effective in low- and middle-income countries. Online learning programs can lead to learning through community of practice when learners and teachers are able to interact and engage in peer support and reflective practice. Educators should consider incorporating small group discussions, a flipped classroom design, and opportunities for asynchronous interactions to enhance learning for participants in online learning programs.

Ketamine has been widely used in refractory pain as an opioid adjuvant. Evidence suggests that ketamine can also have an essential role in easing depressive symptoms. Its rapid onset of action makes it a valuable choice in palliative care.

We present a case of a 70-year-old man with stage IV renal carcinoma and bone metastasis. The main symptoms included neuropathic pain, depression, and a persistent and severe desire for death.

We started continuous subcutaneous infusion with morphine 30 mg and ketamine 100 mg/day. The dose of ketamine was incremented to the maximum of 250 mg/day. During the 28-day treatment, we observed an overall improvement in neuropathic pain, depressive symptoms, and other end-of-life psychological aspects of distress. Only minor psychological side effects were identified, which were controlled by using midazolam in the continuous subcutaneous infusion.

Some studies have already demonstrated the benefits of ketamine use in alleviating depression, using parental infusion or oral formulas, which are administered in hospice care. Our report enhances the benefit of the subcutaneous route for palliative patients cared for at home.

The clinic visit is a critical point of contact for family caregivers. However, only 37% of family caregivers are able to accompany patients to visits. When they cannot attend, caregivers receive visit information to assist with their caregiving. However, little is known about how method of receiving information from clinic visits is associated with important caregiver outcomes. This study sought to determine whether mode of receiving clinic visit information (speaking with the patient, attending the visit, or using an after-visit summary [AVS]) was associated with changes in caregiver burden, caregiver preparedness, and the positive aspects of caregiving.

Cross-sectional web-based survey of a national sample of adult family caregivers. Multiple linear regression models determined associations between communication modes and caregivers’ burden, preparedness, and positive aspects of caregiving, adjusting for sociodemographic covariates.

Respondents (N = 340) were mostly male (58%), White (59%), ranged from 18 to 85 years old, and supported patients with conditions including diabetes, dementia, and cancer. Speaking with patients was associated with increases in positive aspects of caregiving (95% CI = 2.01, 5.42) and an AVS was associated with increases in positive aspects of caregiving (95% CI = 0.4, 3.56) and preparedness for caregiving (95% CI = 0.61, 3.15). Using any method of receiving information from visits was associated with the greatest increase in preparedness, compared to not receiving visit information. We did not observe an association between method of communication and caregiver burden.

Method of communicating visit information is associated with improvements in caregiver preparedness and the positive aspects of caregiving, though caregiver burden may be unaffected by information exchange. Given the limitations of current communication methods, future work should explore directionality of the associations we found and identify visit communication strategies with caregivers that optimize caregiver and patient outcomes.