Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers.

The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis.

We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the “diagnosis journey.” Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on “diagnosis communication pitfalls” where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants’ reactions and adjustments post-ALS diagnosis are described in “the aftermath of diagnosis.” In this third theme, we highlight participants’ shock and their need to rethink overall life plans and roles in their family.

Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.

To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care.

A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was conducted from October 2022 to January 2023 using 9 electronic databases and gray literature. Studies on spiritual care interventions in palliative care were included. Disagreements between the 2 reviewers were resolved by discussion or a third reviewer.

A total of 47 studies were included in this review. All selected articles were published between 2003 and 2022. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering: conversations between the patient and a team member, religious practice interventions, therapeutic presence, guided music therapy, multidisciplinary interventions, guided meditation, art therapy, and combined interventions with multiple components such as music, art, integrative therapy, and reflection.

Our study identified few spiritual care interventions in palliative care worldwide. Although this review noted a gradual increase in studies, there is a need to improve the reporting quality of spiritual care interventions, so they can be replicated in other contexts. The different interventions identified in this review can be a contribution to palliative care teams as they provide a basis for what is currently being done internationally to alleviate suffering in palliative care and what can be improved. No patient or public contribution was required to design or undertake this methodological research.

The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions.

Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted.

Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions.

Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.

Existing systematic reviews related to advance care planning (ACP) largely focus on specific groups and intervention efficacy or are limited to contextual factors. This research aims to identify the modifiable factors perceived by different users of ACP in healthcare settings and inform healthcare professionals about the factors affecting ACP practice.

Five English-language databases (ProQuest, PubMed, CINAHL Plus, Scopus, and Medline) and two Chinese-language databases (CNKI and NCL) were searched up to November 2022. Empirical research identifying factors related to ACP in healthcare settings was included. ACP is defined as a discussion process on future end-of-life care. Thematic synthesis was performed on all included studies.

A total of 1871 unique articles were screened; the full texts of 193 were assessed by 4 reviewers, and 45 articles were included for analysis. Twenty-two (54%) studies were qualitative, 15 (33%) were quantitative, and 6 (13%) used mixed methods. Foci varied from 28 (62%) studies on a single subject group (either patient, family, or physician), 11 (25%) on 2 subject groups (either patient and family or patient and healthcare professional), and 6 (13%) covered 3 subject groups (patient, family, and healthcare professional). Among the 17 studies involving more than 1 subject group, only 2 adopted a dyadic lens in analysis. Complex interwoven factors were categorized into (1) intrapersonal factors, (2) interpersonal factors, and (3) socio-environmental factors, with a total of 11 themes: personal belief, emotions, the burden on others, timing, responsiveness, relationship, family dynamics, experience, person taking the lead, culture, and support.

Patients, families, and healthcare professionals are the essential stakeholders of ACP in healthcare settings. Factors are interweaved among the intrapersonal, interpersonal, and socio-environmental dimensions. Research is warranted to examine the dynamic interactions of the 3 essential stakeholders from a multidimensional perspective, and the mechanism of the interweaving of factors.

The research aimed to test the job demands-resources (JD-R) model on a sample of Italian oncology workers, and the role of perceived organizational support (POS) as a moderator of the effects of JD on outcomes (job satisfaction and burnout [BO]).

Based on the JD-R model, a correlational study was designed to investigate the relationships between JD, POS as a job resource, self-esteem (as a personal resource), and job outcomes (BO and job satisfaction); the research involved a sample of oncology nurses (N = 235) from an Italian public hospital, who completed a questionnaire during working hours. Relationships between variables were investigated with multiple regressions and moderation analysis.

Results confirmed that JD predict both BO and job satisfaction; POS is a weak predictor of job outcomes, but its mediator role in the JD-outcomes relationship was confirmed: the more the nurses perceive a supportive organization, the weaker the positive relationship between JD and BO.

Findings are consistent with other contributions that highlighted that organizational job resources may attenuate the adverse effect of JD on positive and negative outcomes: POS may play a central role in employee well-being and health, acting as a possible moderator, and somehow defusing the positive association between JD and outcomes.

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.

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.

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.

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.

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.

Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers’ ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children’s palliative care (CPC) by answering the question, “What are the experiences of EM families of children’s palliative care across developed countries?”

A systematic search of articles from 6 databases (Scopus, Medline, Web of Science, APA PsycINFO, CINAHL, and Global Health) with no limit to the date of publication. The search was conducted twice, first in June 2022 and again in December 2022. The extracted data were analyzed using thematic synthesis.

Eight studies explored the experiences of families of EM in different high-income countries. Four themes were identified: unmet needs leading to communication gaps, accessibility of hospital services and resources, the attitude of healthcare workers, and the need for survival as an immigrant.

Overall, the study shows EM families rely heavily on healthcare professionals’ cultural competence in delivering palliative care for their children. There is an interplay between EM families’ culture, spiritual ties, communication, and social needs from this review. Understanding how to bridge the communication gap and how families use their culture, faith, and spirituality to manage their pain, and grief and improve their quality of life would be extremely beneficial for healthcare practitioners in increasing their support to EM families accessing CPC.

Social workers are vital in delivering psychosocial services in palliative care, yet their specific roles in palliative oncology remain undefined. This study aimed to delineate the current practice role of oncology social workers involvement in palliative care in the United States.

This study utilized a cross-sectional design and involved secondary analysis of data from a nationwide survey focused on workforce conditions for oncology social workers. The participants were social workers who were directly involved in providing care to cancer patients and delivering palliative care services. They completed an online survey in which they indicated the relevance of 91 tasks related to their practice. The survey also collected individual demographic and work-related characteristics. Exploratory factor analysis was used to achieve the study objective.

Responses from a secondary data set of 243 oncology social workers involved in palliative care results in a 6-factor solution comprising 34 tasks. These factors were identified as: Therapeutic Interventions for Individuals, Couples, and Families; Facilitate Patient Care Decision-making; Care Coordination; Assessment and Emotional Support; Organization and Community Service; and Equity and Justice. All 6 factors demonstrated good internal reliability, as indicated by Cronbach’s alpha scores above 0.70.

The findings can be used to develop job descriptions and education for social workers employed in palliative cancer care. The clear role descriptions also make social work visible to other professionals in palliative oncology. By clarifying the roles of oncology social workers, this study contributes to the improvement of palliative care delivery and enhances interprofessional collaboration within cancer care teams.

Virtual reality (VR) offers the prospect of a safe and effective adjunct therapeutic modality to promote mental health and reduce distress from symptoms in palliative care patients. Common physiological and psychological symptoms experienced at the end of life may impact the person’s participation in day-to-day activities that bring them meaning. The purpose of this study was to examine the effect of VR interventions on occupational participation and distress from symptoms.

To describe the stimulus, results, and learnings from a single-site pilot study of virtual reality therapy in a specialist palliative care setting.

Participants engaged in a VR session lasting from 9 to 30 minutes related to coping with pain, inner peace and mindfulness, adventure, and bucket list.

The pilot prospective quantitative observational cohort study was conducted from November 2021 through March 2022 using a pre-post VR intervention research design. Quantitative data was collected using patient-rated assessments and a wireless pulse oximeter. Occupational performance, satisfaction, and distress symptoms were measured using the Canadian Occupational Performance Measure and the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). The intervention and study design adhered to international guidelines.

Ten participants engaged in the VR interventions. Data showed significantly improved occupational performance and satisfaction scores (p < .001), decreases in PCOC SAS distress from pain (p = .01), fatigue (p < .001), and heart rate (p = .018). No adverse side effects were observed.

Outcomes included an analysis of virtual reality’s effectiveness to alleviate symptom burden and increase occupational participation for palliative care patients. Of specific interest to the research team was the application of virtual reality in a community–based and inpatient palliative care context to supplement allied health services and its feasibility of integration into standard palliative care.

VR therapy showed positive improvements in the participants’ occupational performance, satisfaction, and distress from pain and fatigue.

The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts.

In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients’ altruistic acts; and possible interventions fostering patient altruism.

Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients’ altruistic motivations.

We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.