Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs’ psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT.

This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants.

Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs’ psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences.

SGOT is an impactful OHC used to meet AYAs’ social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.

This study aimed to evaluate the evidence of validity and accuracy for the Mindful Self-Care Scale-Brief (B-MSCS) in Brazil among family caregivers of people with cancer.

This was a cross-sectional study with a sample of 203 family caregivers of people with cancer. The instruments used in this study were the following: B-MSCS, Brief Resilience Scale, and Brief Scale for Spiritual/Religious Coping. Exploratory factor analysis was carried out using the principal axis factoring method and direct oblimin oblique rotation, and confirmatory factor analysis using the robust weighted least squares means and variance adjusted estimation method and GEOMIM oblique rotation. The internal consistency of the latent factors was measured using Cronbach’s alpha coefficients.

The 6-factor model showed good fit to the data, with satisfactory reliability indices and adequate representation of the scale’s internal structure. The results that can support arguments in favor of validity evidence based on internal structure for the B-MSCS-Brazilian version (BR) relate to a 19-item version which, grouped into 6 latent factors, explained 46.47% of the variance. The factor solution reproduced 79.2% of the theoretically expected structure and 5 items were excluded. The Cronbach’s alpha coefficient of the factors in the B-MSCS-BR ranged from 0.58 to 0.84. Positive religious/spiritual coping had a direct association with the B-MSCS-BR factors, with the exception of the Physical Care factor (r = 0.033, p = 0.635). Negative spiritual/religious coping was inversely associated with the Mindful Relaxation (r = −0.160, p = 0.023), Supportive Relationships (r = −0.142, p = 0.043), and Mindful Awareness factors (r = −0.140, p = 0.045). There were no associations between the B-MSCS-BR factors and resilience.

The findings reveal that the B-MSCS (19-item) is a valid, reliable, and culturally-appropriate instrument to examine the practice of mindful self-care by family caregivers of people with cancer in Brazil.

The existing studies among workers with a past cancer diagnosis have rarely focused on workers confronted with cancer recurrence or metastases specifically, so knowledge is lacking. The aim of this study, therefore, was to investigate the work functioning (work ability, burnout complaints, and work engagement) of workers with recurrent or metastasized cancer. Furthermore, the association of psychological capital (hope, optimism, resilience, and self-efficacy) with work functioning was studied.

Data from a survey study among workers 2–10 years past cancer diagnosis were used (N = 750); 73% reported a diagnosis of breast cancer and 27% a diagnosis of cancer other than breast cancer. Analysis of variance was used to compare participants with and without cancer recurrence or metastases regarding work functioning (work ability, burnout complaints, and work engagement) and psychological capital (hope, optimism, resilience, and self-efficacy). Multivariate regression analyses were used to analyze the association of type of cancer and psychological capital with work functioning among workers with cancer recurrence or metastatic cancer (n = 54), controlling for age.

Work ability is significantly lower among workers with cancer recurrence or metastases (controlling for age); however, burnout complaints and work engagement are at comparable levels. Among workers with cancer recurrence or metastases, a higher level of hope is positively associated with work ability and work engagement, and a higher level of hope or resilience is negatively associated with burnout complaints.

Among workers with cancer recurrence or metastases, work ability needs attention. Furthermore, especially the element hope of psychological capital is important to focus on because of the association with more favorable work functioning in general. The clinical psycho-oncological practice may benefit from these insights in guiding this vulnerable group of workers who are living with active cancer and many uncertainties.

The growing demand for palliative care has been accelerated due to the COVID-19 pandemic. However, providing community-based palliative care was also more difficult to do safely and faced several challenges. The goal of this integrative review was to identify, describe, and synthesize previous studies on the challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic.

Searches were carried out on the Ovid MEDLINE, CINAHL, PsycINFO, Social Care Online, PubMed, Embase, and Expanded Academic databases. Journals typically reporting palliative care and community health studies were also searched (Palliative Medicine, Journal of Pain and Symptom Management, and Health & Social Care in the Community). All articles were peer-reviewed and published in English between December 2019 and September 2022.

Database and hand searches identified 1231 articles. After duplicates were removed and the exclusion criteria applied, 27 articles were included in the final review. Themes in the research findings centered on 6 interconnected categories. The challenges imposed by the pandemic (lack of resources, communication difficulties, access to education and training, and interprofessional coordination), as well as the varying levels of success of the health-care responses, impacted the well-being of health professionals and, in turn, the well-being and care of patients and families.

The pandemic has provided the impetus for rethinking flexible and innovative approaches to overcome the challenges of delivering community palliative care. However, existing governmental and organizational policies require revision to improve communication and effective interprofessional collaboration, and additional resources are needed. A blended model of virtual and in-person palliative care delivery may provide the best solution to community palliative care delivery moving forward.

Advanced cancer patients’ understanding of their illness is key for making informed treatment decisions. Despite the known importance of patients’ awareness of their disease prognosis, it is debatable whether this awareness is positively, negatively, or not associated with clinical and psychological outcomes among patients with advanced cancer. This paper aims to determine the prevalence of and factors associated with prognostic awareness and its association with quality of life (QoL), spiritual well-being, pain control, and psychological distress in patients with advanced cancer in Indonesia.

This cross-sectional questionnaire-based survey was part of a multicountry study titled “Asian Patient Perspectives Regarding Oncology Awareness, Care and Health (APPROACH).” Patients were asked what they knew about their cancer and treatment. QoL and spiritual well-being were measured using the Functional Assessment of Cancer Therapy – General (FACT-G) and Functional Assessment of Chronic Illness Therapy – Spiritual Well-being (FACIT-Sp) questionnaire. Psychological distress experienced by patients was recorded via the Hospital Anxiety and Depression Scale. Pain severity was also assessed. Data from 160 patients were analyzed using descriptive statistics and multivariable regression models.

Of the 160 patients who participated, 55 (34.4%) were unaware of their cancer stage. Those who were aware of their stage of cancer were younger than those who were not aware (45.7 years vs 50.4 years, p = .015). There was no significant difference in spiritual well-being and other domains of QoL between those who were aware and those who were not aware of their advanced cancer stage. There was also no significant difference in anxiety depression or pain severity, even after adjustment for demographic and clinical characteristics.

Given the high prevalence of patients who wrongly thought their cancer was curable, more could be done to improve disease and prognostic understanding among patients with advanced cancer in Indonesia. Those who were aware of their advanced cancer stage did not have a poorer QoL, nor did they have more anxiety or depression than those who were unaware. This finding suggests that concerns about the negative impact of prognostic disclosure may be unfounded.

Spirituality, emotional intelligence, and palliative care (PC) knowledge have a positive and direct influence on self-efficacy and on perception of preparation and ability to provide end-of-life (EOL) care. The aim of this work is to propose a conceptual model that relates spirituality, emotional intelligence, PC knowledge, self-efficacy, and the preparation and ability to provide EOL care by doctors and nurses.

Quantitative, exploratory, descriptive, and inferential study applied to doctors and nurses in a hospital in the north of Portugal, between May and July 2022. The data collection instrument includes a questionnaire. The relationships between latent variables were evaluated using structural equation models by the partial least squares method using the Smart PLS 3.0 software. It was obtained the previous authorization of the ethics committee.

The results (n = 380) indicate that self-efficacy, spirituality, and PC knowledge have a positive influence on the ability to provide EOL care. Emotional intelligence and spirituality have a direct and positive effect on self-efficacy. There is no direct influence of emotional intelligence on the ability to provide EOL care, but emotional intelligence has an indirect effect mediated by self-efficacy.

Spirituality, self-efficacy, and emotional intelligence are very important for the ability of doctors and nurses to provide EOL care. The identification of predictive factors of the ability to provide EOL care and the determination of the relationship between them can improve the provision of EOL care, reduction of health costs, timely and early referral of people to PC, and increase life quality.

To investigate the prevalence and current approaches to clinical management of chronic nonmalignant pain in patients referred to palliative care services.

A systematic review was performed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered with PROSPERO (CRD42021205432). Six databases were searched on 25 August 2020 and again on 11 July 2022: PubMed and Ovid MEDLINE, Elsevier Scopus, PsychINFO, the Cochrane Library, and CINAHL. Search included prevalence or intervention studies with patients who had chronic nonmalignant pain and were referred to palliative care services. Screening was undertaken independently by 2 reviewers.

The searches returned 417 titles; subsequent screening identified 5 eligible studies, 4 from the USA and 1 from Hong Kong, including 2 cohort and 3 cross-sectional studies. Sample sizes ranged from 137 to 323, with a total of 1,056 patients. The prevalence of chronic nonmalignant pain ranged from 14% to 34% across different palliative care settings. There was significant crossover of pain types; 54% of patients with chronic no-malignant pain had additional cancer-related pain or cancer treatment–related pain. Opioids were used to manage stand-alone chronic nonmalignant pain for 39% of patients compared to 58% with mixed chronic nonmalignant pain and other pain diagnoses.

Five studies have documented the prevalence of chronic nonmalignant pain of 14–34% in palliative care. Further research including prevalence and treatment studies would provide clearer evidence for best practice management of chronic nonmalignant pain in the palliative care setting.

The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine.

A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals.

Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles.

This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on “persistently high” and “low stable” trajectories of healthcare utilization in patients who received palliative care support at home.

Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis.

Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers’ mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations.

Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

Early identification of palliative care (PC) needs is crucial to provide appropriate holistic care to patients. The objective of this integrative review is to synthesize the methods used to identify the prevalence of PC needs.

An integrative review search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus with full text, ProQuest, Wiley InterScience, ScienceDirect, Scopus, PubMed, and Web of Science with publications from 2010 to 2020 was carried out in English. Empirical studies examining the methods used to determine the prevalence of PC needs were included. The methods of data extraction of the included articles were categorized by data source, study setting, and data collector. Quality appraisal was performed using QualSyst.

Of the 5,410 articles screened, 29 were included in this review. Two articles identified the prevalence of PC needs in a community that was supported by a network of volunteers, while 27 studies considered this at a continent, country, hospital, and/or primary care facility level as represented by physicians, nurses, and researchers.

Various methods have been used to determine the prevalence of PC needs, and the outcomes are valuable for policymakers in developing PC services when allocating resources at the national and community levels. Future research to identify PC needs across health settings, especially primary care facilities, should consider providing PC across a spectrum of care settings.