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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.
This study aimed to examine the feasibility and preliminary effectiveness of a behavioral activation (BA) program for the bereaved of cancer patients toward reducing depressive symptoms.
Methods
The BA program for the bereaved was a partially modified version for cancer patients. This program encompassed a preinterview and seven 50-minute sessions every 1–2 weeks, using worksheets, with homework assignments each day. To examine feasibility, the completion rates of intervention and 3 months of follow-up were examined. To examine the preliminary effectiveness, psychological symptoms were assessed with the Patient Health Questionnaire (PHQ-9; primary outcome) and Beck Depression Inventory-II (BDI-II) for depression and the Generalized Anxiety Disorder-7 (GAD-7) for anxiety. These were evaluated 3 times: before, immediately after, and 3-month post-intervention. Non-parametric tests were used for comparison of scores at 3 time points and calculation of effect size.
Results
Of the 42 bereaved who were contacted, 21 were eligible and 20 were participated, while 19 and 18 were in the completed intervention and completed 3-month post-intervention categories (intervention completion rate was 95% and follow-up completion rate was 90%). PHQ-9, BDI-II, and GAD-7 showed significant reductions immediately and 3 months after the intervention compared to pre-intervention, and the effect sizes were all large after 3 months, although they were less than immediately after (PHQ-9: 0.89, 0.71; BDI-II: 0.88, 0.67; GAD-7: 0.57, 0.53).
Significance of results
This study indicated that the BA program for the bereaved of cancer patients was feasible and effective vis-à-vis reducing depressive symptoms.
The coronavirus pandemic has caused concern in the community, especially in patients. Spirituality, hopelessness, and quality of life have an impact on the management of the process in cancer patients during these crisis periods. To investigate COVID-19 anxiety’s mediating role in hopelessness’ relationships with the quality of life and spiritual well-being among cancer patients.
Methods
This study used a cross-sectional design to collect data from cancer patients using self-administered questionnaires. The study recruited 176 cancer patients receiving treatment at a university hospital. The participants completed measures of spiritual well-being, COVID-19 anxiety, hopelessness, and quality of life. Following preliminary analyses, a mediation model was analyzed using the PROCESS macro for SPSS, with the bootstrap method applied (model 4).
Results
The results showed that spiritual well-being was negatively associated with COVID-19 anxiety and hopelessness, and positively associated with the quality of life. COVID-19 anxiety was associated positively with hopelessness, and negatively with the quality of life. Moreover, COVID-19 anxiety mediated the relationship between hopelessness, spiritual well-being, and quality of life.
Significance of results
This study provides evidence for COVID-19 anxiety’s mediating role in the relationship between spiritual well-being and quality of life and hopelessness among cancer patients. The findings suggest that interventions aimed at reducing COVID-19 anxiety may be effective in reducing hopelessness among cancer patients, by promoting higher levels of spiritual well-being and improving quality of life.
The primary aims of this multicenter, prospective observational study were to investigate spiritual well-being, resilience, and psychosocial distress in an Italian sample of glioblastoma patients undergoing radiochemotherapy. The secondary aim was to explore the influence of demographic, clinical, and psychological characteristics on survival.
Methods
The assessment was conducted only once, within the first week of radiochemotherapy treatment. Spiritual well-being was evaluated by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp-12), and religious/spiritual beliefs and practices were evaluated by the System of Belief Inventory. Resilience was evaluated by the Connor−Davidson Resilience Scale (CD-RISC). Psychosocial distress was evaluated the by Distress Thermometer and Hospital Anxiety Depression Scale. We conducted an univariable analysis of overall survival (OS) using data from the most recent follow-up available, considering demographic and clinical variables that could influence survival. Follow-up was defined as either the time of death or the latest follow-up visit recorded.
Results
We recruited 104 patients, and the median follow-up time was 18.3 months. “Distressed” patients had lower scores than “not distressed” patients on the FACIT-Sp-12 and CD-RISC. While OS was not significant according to the FACIT-Sp-12 threshold, the Kaplan−Meier log-rank test was 0.05 according to the CD-RISC threshold. Among demographic variables, age showed significant associations with OS (p = 0.011). Resilience showed significant associations with OS (p = 0.025).
Significance of results
Data showed that high spiritual well-being was associated with high resilience and an absence of psychosocial distress in our sample of glioblastoma patients undergoing radiochemotherapy. Patients with greater resilience survived longer than those with lesser resilience. Profiling spiritual well-being and resilience in glioblastoma patients undergoing radiochemotherapy can be seen as a resource to identify novel characteristics to improve clinical take-in-charge of glioblastoma patients.
To explore patients’ awareness levels of palliative care (PC) and how this awareness shapes their preferences regarding the timing and approach for discussing it.
Methods
The study, conducted at a prominent institution specializing in oncology care, enrolled women aged 18–75 years who had been diagnosed with breast cancer. Patients completed guiding questions: Do you know what PC is?, When is the most appropriate time and the most appropriate way to discuss PC?. The interviews were conducted exclusively via video call and were recorded, transcribed, and then deleted.
Results
The study involved 61 participants, averaging 49 years old. Almost half (47.5%) had completed high school. Qualitative data analysis revealed 9 thematic categories. Regarding the first question, 2 divergent categories emerged: care for life and threatening treatment. For the second question, opinions diverged into 4 categories: At an early stage, mid-course of the disease, as late as possible, and no time at all. For the third question, 3 categories emerged: communication and support, care setting and environment, and improving the PC experience.
Significance of Results
This study reveals diverse perspectives on patients’ awareness and preferences for discussing PC, challenging the misconception that it’s only for end-of-life (EOL) situations. Comprehending PC influences when and how patients discuss it. If tied solely to EOL scenarios, discussions may be delayed. Conversely, understanding its role in enhancing advance support encourages earlier conversations. Limited awareness might delay talks, while informed patients actively contribute to shared decision-making. Some patients prefered early involvement, others find mid-treatment discussions stress-relieving. Community support, quiet environments, and accessible resources, underscoring the importance of a calm, empathetic approach, emphasizing the importance of understanding its role in advance support and providing valuable implications for enhancing patient care practices, theories, and policies.
While caring for seriously ill children is a rewarding experience, pediatric healthcare providers may experience sadness and emotional distress when their patient dies. These feelings, particularly when not addressed, can lead to negative health and occupational outcomes. Remembrance practices can provide a safe space for staff to process their grief. This study explored pediatric healthcare providers’ perceptions of an annual Pediatric Remembrance Ceremony (PRC) and a quarterly program, Good Grief and Chocolate at Noon (GGCN), to learn what components of the programs were considered meaningful and the personal impact on those who attended. The programs pivoted to a virtual platform during the COVID-19 pandemic, and the study also assessed providers’ perspectives of attending the programs virtually.
Methods
A 19 multiple choice survey instrument was designed, reviewed, piloted, revised, and re-piloted by an interdisciplinary bereavement committee prior to administration. The survey included 2 open-ended questions, inviting additional insights into personal impact and future directions for remembrance programs. The survey was administered on an encrypted online platform.
Results
Components of the PRC respondents most valued included the opportunity for staff to choose a name of a patient they cared for and to light a candle for that patient as their name is read. Those who participated in GGCN found story sharing helpful, along with having a speaker address a topic around loss and grief during the second half of the session. Both programs provided reflection, solidarity, and memorialization. Most respondents prefer having both in-person and virtual options.
Significance of results
Healthcare providers are affected by the death of the children they care for and value opportunities provided to join colleagues in remembering their patients. The findings underscore the value of remembrance programs in supporting bereaved staff.
Prolonged grief is a chronic and debilitating condition that affects millions of persons worldwide. The aim of this study was to use a qualitative approach to better understand how relatives with prolonged grief disorder perceive what does or not help them and whether they were able to make recommendations.
Methods
Participants were all relatives of deceased patients admitted to 26 palliative care units involved in the FamiLife study; relatives were included if diagnosed with prolonged grief symptoms (i.e., Inventory Complicated Grief (ICG) questionnaire with a cut-off >25), and volunteered to participate. Semi-directed telephone interviews were conducted by psychologists between 6 and 12 months after the patient’s death. The interviews were open-ended, without a pre-established grid, then transcribed and analyzed using a thematic approach.
Results
Overall, 199/608 (32.7%) relatives were diagnosed with prolonged grief symptoms, i.e., with an ICG score >25, and 39/199 (20%) agreed to be interviewed. The analysis yielded 4 themes: (1) the experience of mourning: intense sadness and guilt (reported by 35/39 participants, 90%); (2) aggravating factors (38/39, 97%): feeling unprepared for death and loneliness, presence of interpersonal barriers to adjustment, external elements hindering the mourning progress; (3) facilitating factors (39/39, 100%): having inner strength or forcing oneself to get better, availability of social and emotional support; and (4) the suggestions grieving relatives had to alleviate the grief burden (36/39, 92%). The analysis enabled to identify 5 suggestions for relieving the grief burden: improving communication, developing education about death and grief, maintaining contact, offering psychological support, and choosing the right time for the palliative care team to contact the relatives.
Conclusions
This study revealed how bereaved relatives experienced the help provided by the healthcare teams, their representations, and what could be improved. These findings could be used to design intervention studies.
This case highlights the limitations of current prognostication and communication in clinical practice.
Methods
We report a case of a 50 year old patient with metastatic melanoma following admission to intensive care unit and later transferred to palliative care unit for end-of-life care.
Results
The patient had clinical improvement despite signs of predictors of death and was later transferred back to care of oncology team.
Significance of results
Physicians frequently overestimate or underestimate survival time which can be distressing to patients and families. There is need for further research to improve the accuracy of these tools for the sake of our patients and their families.
Coping styles can be improved by dyadic palliative care interventions and may alleviate patients’ and family caregivers’ distress. Moreover, family caregivers’ preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.
Methods
A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor–Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.
Results
Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman’s ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38), self-blame (ρ = −0.27), and denial (ρ = −0.14) was found to be associated with less resilience.
Significance of results
By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.