We partner with a secure submission system to handle manuscript submissions.
Please note:
You will need an account for the submission system, which is separate to your Cambridge Core account. For login and submission support, please visit the
submission and support pages.
Please review this journal's author instructions, particularly the
preparing your materials
page, before submitting your manuscript.
Click Proceed to submission system to continue to our partner's website.
To save this undefined to your undefined account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you used this feature, you will be asked to authorise Cambridge Core to connect with your undefined account.
Find out more about saving content to .
To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle.
Find out more about saving to your Kindle.
Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.
Wernicke encephalopathy (WE) is an acute neuropsychiatric disorder caused by thiamine deficiency. The classical triad of symptoms for WE include mental status changes, ataxia, and ophthalmoplegia. In contrast, more uncommon symptoms include hallucinations. Known risk factors include alcoholism, malignancies, and chronic kidney disease, particularly hemodialysis. However, WE in nonalcoholic adults is often overlooked.
Methods
We report a WE patient with lung cancer undergoing hemodialysis who presented with the uncommon symptom of active hallucinations, which were improved by thiamine replacement therapy, despite a borderline whole blood thiamine concentration.
Results
An 81-year-old woman with lung cancer and undergoing hemodialysis was referred to our psycho-oncology department for active hallucinations that appeared suddenly 24 days earlier. She had been diagnosed with lung cancer 6 months earlier and was undergoing chemotherapy and radiotherapy. She had no alcohol dependence or anorexia before or after admission. Physical examination revealed active visual hallucinations and delirium. On suspicion of WE, intravenous thiamine was administered. One day after administration, the hallucinations and delirium improved. Her whole blood thiamine concentration was borderline (24 ng/ml).
Significance of results
WE might be a cause of active visual hallucinations as they disappeared on thiamine administration alone. We need to be aware of risk factors such as malignancies and hemodialysis, and it is important not to overlook WE.
Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection. However, all existing versions show some limitations with potential for improvement. This study aims to develop and initially validate a theory-driven and statistically sound SAHD short version based on a large multinational sample to advance the WTHD assessment in different countries and with different legislations.
Methods
A 3-step procedure was carried out including (1) theory-driven item selection, (2) exploratory, and (3) confirmatory factor analysis. We used a data set collected between 1998 and 2020 across 3 different countries (Germany, Spain, USA). Participants were N = 1156 complete cases (n = 181 German, n = 101 Spanish and n = 874 US) of severely ill adult in- and outpatients. They had to be ≥18 years and give informed consent.
Results
The exploratory factor analysis revealed that 10 of 11 items previously selected theory-driven loaded on either of 2 factors: (1) WTHD and (2) internal locus of control. These factors showed good to excellent reliability according to Cronbach’s α and McDonald’s Ω, as well as an excellent fit of our data as an overall model for the total sample.
Significance of results
The developed SAHD-10 represents a reliable and valid alternative to the SAHD and an efficient means to measure and further investigate a WTHD in cross-cultural clinical and research settings.
Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integrated in care planning. Our objective was to describe readiness, barriers, and facilitators of ACP among seriously ill Black older adults and their surrogates.
Methods
We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What “matters most” and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Results
Older adults (N = 30) and surrogates (N = 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes – illness experience, social connections, interaction with health providers, burden – supports identification of barriers and facilitators to ACP engagement.
Significance of results
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making.
Historically, patients with cancer were referred to palliative care near the end of life. In recent years, the increased integration of palliative care throughout the entire trajectory of illness has helped patients with cancer better manage their symptoms and improve QOL. However, it is unknown how patients think about the presence and role of earlier, integrated palliative care. This study explored how patients and caregivers experience cancer care in the context of palliative care co-management with oncology.
Methods
We conducted interviews with 18 patients and 13 caregivers to investigate perspectives, attitudes, and experiences surrounding cancer care, specifically with their experiences of co-management with a palliative care outpatient clinic and oncology. Using grounded theory, we identified a typology of patient and caregiver approaches when discussing the care they received and/or desired.
Results
Our data revealed 3 approaches to thinking about palliative care in cancer care. While some participants embraced the “Cure Centrality” approach, caring only about fighting the disease, others adopted a “Quality-of-Life (QOL) Centrality” approach, desiring their health-care team to prioritize a broader range of concerns. A third approach, The “Dual Centrality” approach, espoused values from both approaches.
Significance of results
While co-management of palliative care and oncology is complementary by design, our data suggest that patients and caregivers take a variety of approaches to their copresence. For some patients, palliative care served as an important legitimizing resource for patients desiring expanded priorities in their care (e.g. higher value on QOL and symptom management) and enabling patient-centered care.
Pain is a frequent symptom in cancer patients (CP), and its multidimensional assessment is essential for a comprehensive approach and to establish clinical prognoses. The Short-Form McGill Pain Questionnaire (SF-MPQ) is an internationally recognized tool for the multidimensional assessment of pain, both in clinical and research settings. However, no studies have been reported in Latin America that determine its psychometric properties in CP and chronic pain.
Objectives
To determine the psychometric properties of the SF-MPQ in adult Mexican cancer patients with chronic pain.
Methods
An instrumental design was used with a non-probabilistic convenience sample of 222 cancer patients treated at the pain clinic of a tertiary care hospital. Analyses were conducted to evaluate factorial structure (exploratory and confirmatory factor analysis [CFA]), reliability (internal consistency), measurement invariance, and criterion validity (concurrent and divergent).
Results
CFA verified a 9-item structure divided into 2 factors: (1) Affective-Nociceptive and (2) Neuropathic. A global Cronbach’s alpha coefficient of .82 and a global McDonald’s Omega index of .82 were identified. Configural, metric, and scalar invariance (ΔCFI ≤ .01; ΔRMSEA ≤ .015) were confirmed regarding the sex variable. Finally, the SF-MPQ showed a positive correlation with the Numerical Rating Scale (rho = .436, p< .01) and a negative correlation with the EORTC-QLQ C30 (rho = −.396, p< .01).
Significance of results
The Mexican version of the SF-MPQ presented adequate psychometric properties and fit indices, making it a valid and reliable instrument for use in clinical and research settings in Mexico. Its use is recommended for the comprehensive assessment of pain in oncology in Mexico, as it allows for the understanding of pain characteristics beyond intensity, guiding the establishment of clinical prognoses.
This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to create a comprehensive and inclusive instrument tailored to this unique population, addressing the gap in existing tools that do not meet these specific needs.
Methods
The validation process included a literature review and consultations with experts. A pilot study refined the items, followed by a cross-sectional study involving pediatric palliative patients and their caregivers. Statistical analyses, such as Cronbach’s alpha for internal consistency and exploratory factor analysis for structural validity, were utilized.
Results
The PACOPED QL, comprising 50 items across 8 domains and 6 subdomains, demonstrated strong reliability with Cronbach’s alpha and Guttman split-half reliability both exceeding .9. Validity assessments confirmed its suitability for children with complex illnesses. The tool was refined through expert consultations and pilot testing, reducing items from an initial 85 to a final 50, ensuring relevance and clarity.
Significance of results
The PACOPED QL shows strong reliability and validity in assessing QoL in pediatric palliative patients. Its comprehensive structure makes it a promising tool for clinical practice and research, addressing a critical need for a tailored assessment in this population. The instrument’s robust psychometric properties indicate its potential utility in improving the QoL assessment and care for children with life-threatening illnesses. Further studies are encouraged to confirm its effectiveness across various settings.
This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.
Methods
Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.
Results
Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.
Significance of results
The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.
Compassionate Cities are a novel approach to health-promotive palliative care that uses a population-based approach to promote health and encourage its citizens to act with confidence to help others during death, dying, or bereavement. This study aimed to provide a critical account of how the leaders of a Compassionate City adopted the initiative and how they experienced its development and implementation.
Methods
An interpretative qualitative case study was conducted in a newly established Compassionate City in the UK. Data was collected using in-depth interviews, documentary analysis, and non-participatory observations. Reflective thematic analysis was used to analyze the contents of the multiple resources.
Results
Five observations, 4 document analyses, and 11 interviews with members of the Compassionate City steering committee were conducted. We identified 4 themes: right model, right people, in the right place, at the right time; building a network of organizations and individuals; building sustainable community capacity to deal with grief, loss, and bereavement; and, embedding and sustaining the Compassionate City initiative. The study also found that cross-cutting factors such as leadership, visibility of work, evaluation, communication, and funding influenced and shaped the key themes when developing and implementing the Compassionate City.
Significance of results
This study provides broad insight into the key actions taken by the leaders of a Compassionate City aiming to improve the end-of-life experience of its citizens. We highlight the many challenges and complexities faced by the leaders when translating the concepts of Compassionate Cities into practice and identify key elements to consider for the successful implementation of future initiatives.
Stigma in lung cancer patients may be associated with various negative outcomes such as increased psychosocial symptoms, severity of physical symptoms, and may act as a barrier to medical help-seeking behavior. The Cataldo Lung Cancer Stigma Scale (CLCSS) is one of the most widely used instruments for assessing health-related stigma in lung cancer patients.
Objectives
To determine the psychometric properties of the CLCSS in a Mexican sample of lung cancer patients.
Methods
A non-experimental, instrumental design was employed, using non-probabilistic sampling based on availability. The sample included 265 lung cancer patients. Confirmatory Factor Analysis (CFA) was conducted to assess construct validity, and Cronbach’s alpha and McDonald’s Omega were used for internal consistency and test-retest reliability, respectively, through Pearson correlation coefficient.
Results
The 17-item version yielded a model with 4 factors (stigma and shame, social isolation, discrimination, and smoking) explaining 50.74% of the variance, with adequate values of internal consistency and test-retest reliability.
Significance of results
The Mexican version of the CLCSS is culturally appropriate, brief, psychometrically valid, and reliable for assessing health-related stigma in Mexican lung cancer patients.
Although pediatric cancer often causes significant stress for families, most childhood cancer survivors are resilient and do not exhibit severe or lasting psychopathology. Research demonstrates some survivors may report benefit-finding or positive outcomes following this stressful life event. However, considerably less research has included families of children who are unlikely to survive their illness. Thus, this study investigated benefit-finding among parents and their children with advanced cancer, as well as associated demographic and medical factors.
Methods
Families (N = 72) of children with advanced cancer (ages 5–25) were recruited from a large pediatric hospital. Advanced cancer was defined as relapsed or refractory disease, an estimated prognosis of <60%, or referral to end-of-life care. Participants completed a demographic survey and the Benefit Finding Scale at enrollment.
Results
Children, mothers, and fathers reported moderate to high benefit-finding scores. Correlations between family members were weak and non-significant. Children reported significantly higher benefit-finding than fathers. Demographic and medical factors were not associated with benefit-finding in children, mothers, or fathers.
Significance of results
Families of children with advanced cancer reported moderate to high benefit-finding regardless of background or medical factors. Children identified benefits of their cancer experience independent of the experiences of their mothers and fathers. Larger studies should continue to examine factors associated with positive and negative outcomes in the context of childhood cancer to inform interventions.
Previous studies have shown that nurses’ spiritual care competence is related to characteristics of personal spirituality, training adequacy, and comfort, confidence, and frequency of provision of spiritual care. However, these studies assumed that all participants understood spiritual care in the same way, and used self-ratings of spiritual care competence, which are problematic. Our previous study found that spiritual care was understood in 4 qualitatively different ways that can be arranged in order of competence. This study aimed to re-examine the relationships between nurse characteristics and spiritual care competence, using spiritual care understanding as a proxy for competence.
Methods
Data was collected from a convenience sample of nurses who completed an anonymous, online survey. The survey provided qualitative data about what spiritual care means for them. The survey also provided quantitative data regarding nurse characteristics. This study created sub-groups of nurses based on their understanding of spiritual care, and used the quantitative data to construct a profile of nurse characteristics for each sub-group. Kruskal–Wallis statistical tests determined whether nurse characteristics differed across the 4 sub-groups.
Results
Spiritual care competence was not related to confidence or comfort in providing spiritual care. Relationships with spirituality, training adequacy, and frequency of provision of spiritual care were not linear; i.e., higher competence did not always correspond with higher scores of these characteristics.
Significance of results
The results raise concerns about the construct validity of using comfort and confidence as estimates of spiritual care competence. That the relationships between competence and spirituality, training adequacy, and frequency of spiritual care provision was not as linear as portrayed in extant literature, suggests that outcomes of training may depend on the type of spiritual care understanding subscribed to by training participants. The findings offer insights about how nurses could achieve high levels of spiritual care performance.
Older adults often have a heightened awareness of death due to personal losses. In many low- and middle-income countries, including Nigeria, conversation about end-of-life issues and advanced care planning (ACP) among older adults is gradually emerging. Our study explored older adults’ knowledge and perceptions towards advanced directives and end-of-life issues in a geriatric care setting in Nigeria.
Methods
A cross-sectional study was conducted among older adults (aged ≥60 years) in a geriatric outpatient clinic. Data were collected using an interviewer-administered, semi-structured questionnaire, tested at a significance level set at alpha 0.05.
Results
The study included 204 participants with a mean age of 71.3 ± 7.2 years, predominantly female (67.2%). Few of the participants have heard about end of life (20.1%), living will (19.1%), power of attorney (19.6%), and ACP (25.9%). About 29.9% of the respondents considered having a living will, of which about 34.4% have written one. Only 23 (11.3%) would consider discussing ACP in the future, 32 (15.7%) would discuss place of care, and 30 (14.7%) place of death. Preparedness for end of life and knowledge of ACP was higher among males, those with formal education, and those with good self-rated health (p < 0.05).
Significance of results
The study highlighted gap in awareness and engagement in ACP among older adults in a country like Nigeria. This lack of knowledge can lead to inadequate end-of-life care and unpreparedness for critical health decisions for older adults in Africa. Thus, improving awareness and understanding of ACP can empower older adults, ensuring their end-of-life preferences are respected, enhancing the quality of care, and reducing the emotional and financial burden on families.
Cancer diagnosis and treatment can result in a significant psychological burden. This study sought to investigate the prevalence of major depression, associated treatments, and suicidal ideation in cancer survivors compared to a non-cancer cohort.
Methods
This is a retrospective, population-based study using survey responses from the National Survey on Drug Use and Health collected from January 2015 to December 2019. Survey data sets were queried for all respondents who provided a cancer history. Respondents with a reported history of cancer (“cancer survivors”) were further stratified by whether they reported a “recent” cancer diagnosis within the past 12 months. Survey responses were evaluated for recent diagnoses of and treatments for major depressive disorder and suicidal ideation.
Results
Among the 212,411 survey respondents identified, 7,635 (3.6%) reported a cancer history, with 1,486 (0.7%) reporting a recent cancer history. There were no differences in prevalence of major depression between cancer survivors and participants without cancer (9.3% vs 9.2%, p = 0.762), though the prevalence was slightly higher among recent cancer survivors (10.0% vs 9.2%, p = 0.259). Among respondents diagnosed with major depression, cancer survivors were significantly more likely to receive treatment for depression (78.6% vs 60.3%, p < 0.001). Suicidal ideation was significantly lower among cancer survivors (5.1% vs 6.2%, p < 0.001) including recent survivors (5.0% vs 6.2%, p < 0.001).
Significance of results
There was no overall difference in the prevalence of major depression between cancer survivors and respondents without cancer. Survivors with major depression were more likely to receive treatments. Prevalence of major depression was higher in recent cancer survivors.
Neonatal intensive care units (NICUs) emerge as one of the areas where palliative care is most needed. This study was conducted to examine the attitudes and compassion fatigue levels of NICUs nurses working in Şanlıurfa, where the fertility rate and infant mortality are highest in Turkey, toward palliative care.
Design
This study was conducted in descriptive type.
Methods
The research was carried out with 204 (85%) nurses who agreed to participate in the research between October 2022 and February 2023, out of 240 neonatal intensive care nurses working in the NICU of 2 training and research hospitals and a university hospital in Şanlıurfa. The data of the study were collected using an Introductory Information Form, the Neonatal Palliative Care Attitude Scale, and the Compassion Fatigue Short Scale.
Results
Nurses; compassion fatigue scale mean score was 61.46 ± 26.64, palliative care scale mean score was 3.13 ± 0.74 for organization subdimension, 2.85 ± 0.73 for resources subdimension, and 3.08 ± 0.89 for clinician subdimension. In the results of the study, 8 barriers (parents do not participate in decisions, there is not enough staff, lack of time to spend with the family, lack of policies/rules in institutions for palliative care, lack of education and communication, society’s beliefs, nurses’ personal attitudes toward death, and lack of appreciation of past experiences with palliative care) and 6 facilitators (Nurses’ ability to express their perceptions, views and beliefs about palliative care, to participate and support palliative care, to inform parents, to provide counseling, adequate physical conditions) for palliative care were determined.
Conclusion
While it was determined that nurses had a slightly below moderate level of compassion fatigue and a close attitude toward organization and resources toward palliative care, it was determined that ethical conflict toward palliative care was high in clinical subdimension scores.
Objectives and Significance of Results
It is recommended that all nurses working in the NICU obtain certificates, improvements in resources such as personnel and equipment, improvements in the shift work system and development of policies/rules in institutions for palliative care.
The study used a methodological design to adapt a Turkish translation and validate the Bolton Compassion Strengths Indicators scale.
Methods
The sample of the study consisted of 500 nursing students. Partial least squares structural equation modelling was used to analyze the construct and internal validiy. The values of average variance explained were analyzed for convergent validity. Tukey’s test of additivity examined the additivity, and Hotelling’s T2 test examined the mean difference between items. Internal consistency and test–retest reliability were ensured for reliability. Test and retest scores were compared by applying the paired samples t-test and Wilcoxon test, and the fit was analyzed through the intra-class correlation coefficient.
Results
The Turkish version of the scale consisted of 34 items and 8 subscales. The Cronbach’s alpha coefficient of the overall scale was 0.954. The scale was highly reliable and displayed psychometric solid properties.
Significance of results
It has been determined that the Turkish version of the Bolton Compassion Strengths Indicators scale is a comprehensive, easy-to-understand measurement tool with a broad perspective that can be safely applied to future nurse candidate students. The scale has been evaluated as a reliable measurement tool that can provide cross-cultural measurement.
The rising incidence of cancer has led to an increased number of adult children impacted by parental cancer. Previous research primarily focused on younger individuals, leaving a gap in understanding the experiences of adult children aged 20–35.
Objectives
To examine a model that integrates the interrelationships among the disease’s characteristics (i.e., disease stage), illness representations, coping strategies, and posttraumatic growth (PTG) in young adults with parents diagnosed with cancer. In addition, we examined indirect relationships involving illness representations as independent variables, coping strategies as mediators, and PTG as the outcome variable.
Purpose
The rising incidence of cancer has led to an increased number of adult children impacted by parental cancer. Previous research primarily focused on younger individuals, leaving a gap in understanding the experiences of adult children aged 20–35. This study examines a model that integrates the interrelationships among the disease’s characteristics (i.e., disease stage), illness representations, coping strategies, and posttraumatic growth (PTG) in young adults with parents diagnosed with cancer. In addition, we examined indirect relationships involving illness representations as independent variables, coping strategies as mediators, and PTG as the outcome variable.
Methods
A cross-sectional survey was conducted with 109 adult children (ages 20–35) of cancer patients. Data were collected using the Posttraumatic Growth Inventory, the Brief Illness Perception Questionnaire, and the COPE questionnaire. Path analysis was performed to test the study’s hypotheses.
Results
The findings revealed that illness representations and coping strategies accounted for significant variance in PTG. Higher perceived severity of the parent’s illness was associated with greater use of problem-focused and emotion-focused coping strategies, which were linked to higher PTG. Lower perceived control over the illness was associated with less use of problem-focused coping and subsequently lower PTG.
Conclusions
This study underscores the importance of subjective perceptions and coping strategies in fostering PTG among young adults with parents diagnosed with cancer. The findings highlight the need for tailored psychosocial interventions to enhance adaptive illness representations and effective coping strategies, promoting resilience and growth in this unique demographic.