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Psychedelic-assisted therapies (PAT) are emerging as a promising treatment for psycho-existential distress in patients with serious illness. A recent qualitative analysis of perspectives of 17 experts in serious illness care and/or PAT research identified divergent views on the therapeutic potential and safety of PAT in patients with serious illness. This paper further analyzes the factors that may influence these views.
Objectives
To identify factors underlying the attitudes of experts in serious illness care and/or PAT toward PAT and its potential role in serious illness care.
Methods
Semi-structured interviews of 17 experts in serious illness care and/or PAT from the United States and Canada were analyzed to identify factors cited as influencing their views on PAT.
Results
Five factors were identified as influencing experts’ attitudes toward PAT: perception of unmet need, knowledge of empirical studies of PAT, personal experience with psychedelics, professional background, and age/generation. In addition, an integrative theme emerged from the analysis, namely PAT’s disruptive potential at 4 levels relevant to serious illness care: patient’s experience of self, illness, and death; relationships with loved ones and health-care providers; existing clinical models of serious illness care; and societal attitudes toward death. Whether this disruptive potential was viewed as a therapeutic opportunity, or an undue risk, was central in influencing experts’ level of support. Experts’ perception of this disruptive potential was directly influenced by the 5 identified factors.
Significance of results
Points of disruption potentially invoked by PAT in serious illness care highlight important practical and philosophical considerations when working to integrate PAT into serious illness care delivery in a safe and effective way.
Knowledge, beliefs, and attitudes toward palliative care (PC) constitute barriers to its access. Few studies have focused on the intrinsic relationship between these variables, and none has examined the relationship between them and self-care self-efficacy.
Objective
To examine the direct and indirect effects of self-care self-efficacy, knowledge, and beliefs on attitudes toward PC.
Methods
A cross-sectional predictive study was conducted. Self-care self-efficacy, knowledge, attitudes, and beliefs about PC were analyzed using information from the Health Information National Trends Survey (HINTS 5, cycle 2, 2018). Data from 1,162 participants were considered. Structural equation modeling (SEM) was used to represent the statistical mediation model with latent and observable variables.
Results
The structural model presents positive coefficients indicating that self-care self-efficacy significantly predicts knowledge (β = 0.127, p < 0.001) and beliefs (β = 0.078, p = 0.023). Similarly, knowledge is associated with attitudes (β = 0.179, p < 0.001) and beliefs (β = 0.213, p < 0.001). The beliefs measure is also significantly related to attitudes (β = 0.474, p < 0.001). In addition, this structural multiple mediation model shows optimal goodness-of-fit indices: χ2/df = 3.49, CFI = 0.983, TLI = 0.976, RMSEA = 0.046 [90% CI: 0.037–0.056], SRMR = 0.038.
Conclusion
Self-care self-efficacy is significantly associated with knowledge and beliefs about PC, which in turn are related to each other. Altogether, these variables predict positive attitudes toward PC. Understanding the relationship between these variables is relevant for targeting-specific populations and designing timely strategies to improve access to PC.
The COVID-19 pandemic has widened the funded use of telehealth in Australia to support telehealth delivery to all patients in any setting. Increasing the use and experience of telehealth brings to light unique insights into the advantages and challenges of this new model of healthcare delivery This study aimed to qualitatively explore the experiences of both palliative care physicians and patients setting, including their views on its future role in healthcare.
Methods
This qualitative study was conducted across three metropolitan tertiary palliative care centers in Victoria, Australia between November 2020 and March 2021. Purposive sampling identified 23 participants (12 physicians and 11 patients). Semi-structured interviews focused on the last telehealth consultation, thoughts and impressions of telehealth, and the possibility of telehealth remaining in palliative care. A thematic approach was adopted to code and analyze the data.
Results
Telehealth transformed the ways physicians and patients in this study perceived and engaged with outpatient palliative care across the entire continuum of care. Four key themes were identified: (1) access to care; (2) delivery of care; (3) engagement with care; and (4) the future.
Significance of results
This study provides novel data bringing together the perspective of patients and physicians, which confirms the utility of telehealth in palliative care. Its convenience enables more frequent review, enables reviews to occur in response to lower levels of concern, and adds toward enhancing the continuity of care across and between settings. Moving forward, support seemed strongest for a hybrid model of telehealth and face-to-face consultations guided by key parameters relating to the level of anticipated complexity.
Data regarding the palliative needs of pediatric patients with central nervous system (CNS) cancer are scarce. We aimed to describe the attention provided by a pediatric palliative care (PPC) team to patients with CNS cancer and the differences in care compared to patients who did not receive PPC.
Method
This retrospective study was based on the clinical records of deceased patients with CNS cancer attended by a PPC team over 10 years, analyzing their trajectory and provision of PPC, including medical, psychological, social, and nursing interventions. Furthermore, we compared the last month of life care of deceased patients with CNS cancer in the same institution, based on whether they were attended by the PPC team.
Results
Of 71 patients, 59 received PPC, with a median of 1.6 months (Interquartile range: 0.6–5.2) from referral to death. Home hospitalization was provided to 84.8%, nursing interventions were registered in 89.8%, psychological characteristics in 84.7%, and social interventions in 88.1%. The most common symptoms were pain, dyspnea, and constipation. When comparing patients from the same hospital who received PPC (n = 36) with those who did not (n = 12), the former spent fewer days in the hospital in their last month and last week (p < 0.01) and were more likely to die at home (50% vs. 0%; p < 0.01).
Significance of results
Patients with CNS cancer show various medical, social, and psychological needs during end-of-life care. Providing specific PPC interventions decreased the number of days spent at the hospital and increased the rate of death at home.
Early palliative care integration into the oncologic treatment pattern is recognized and strongly recommended to anticipate end-of-life issues and avoid disproportionate care. Targeted therapies (TTs), with their very rapid onset of action and relatively good tolerance, may have an effect on cancer-related symptoms, which could be beneficial in the context of palliative care.
Methods
Data were extracted from a cohort of all patients hospitalized in an acute palliative care unit between 03.04.2019 and 07.04.2020. Data for all consecutive patients for which a decision on a TT was made during hospitalization were retrospectively analyzed.
Results
Forty-two patients were identified. Thirty-one patients were currently receiving TT on admission. For 19/31 (61.3%) patients, the treatment was discontinued. The remaining 12 patients had TT after discharge from the palliative care unit (continuation of the same TT or modification of the TT during the stay), with an average duration of 208 days and an average of 46 days between the last TT and death. TT was introduced or reintroduced in 7 patients of the 11 patients hospitalized without treatment at admission. In this group, the average duration of treatment was 28 days, with an average of 28 days between the last TT and death. Five of the patients who received re-challenged TT experienced a subjective improvement of their symptom.
Significance of results
TT was discontinued in the majority of our patients. However, in some cases, the treatment was maintained because it was effective on cancer-related symptoms even at the end of life. However, this should not overshadow the palliative process. The continuation or introduction of a specific oncological treatment requires close cooperation between oncologists and palliative care physicians and an honest and clear explanation to patients and their families.
To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).
Methods
Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.
Results
Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.
Significance of results
Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.
This study confirms the effectiveness of pretreatment video-based psychoeducation on stress management and relaxation in reducing depression, anxiety, and uncertainty among patients with breast cancer.
Methods
We conducted a nonrandomized trial with 86 pretreatment patients with breast cancer who were divided equally into intervention and control groups, and stratified according to cancer stages and patient ages. Omitting the excluded participants, 35 intervention group and 36 control group participants were asked to complete the Hospital Anxiety and Depression Scale and Universal Uncertainty in Illness Scale (UUIS) before the psychoeducational intervention (baseline, hereafter “BL “) as well as 1 and 3 months later. Then, a 2 group (intervention and control groups) × 3 time points (BL and 1 and 3 months post-intervention) mixed models repeated measures (MMRM) analysis was implemented.
Results
Analysis confirmed interaction between 2 group × 3 time points for depression, anxiety, and UUIS. Multiple comparisons revealed that each score in the intervention group was significantly lower 1 and 3 months post-intervention compared to BL. Meanwhile, in the control group, the depression score was significantly higher at 3 months post-intervention compared to pre-intervention. The anxiety scores and UUIS of the same group were not significantly different between 1 and 3 months post-intervention. The effect size values 3 months post-intervention were −0.57 for depression, −0.25 for anxiety, and 0.05 for uncertainty.
Significance of results
Pretreatment psychoeducation reduced depression, anxiety, and uncertainty in the intervention group of patients with breast cancer compared to the control group. The effect sizes at 3 months post-intervention were moderate for depression and small for anxiety. These results suggest the effectiveness of psychoeducation for patients with breast cancer, using videos on stress management and relaxation, early at the pretreatment stage.
This study assessed the work-related resources and demands experienced by children’s hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work.
Methods
The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children’s hospice staff were explored using two surveys: the Children’s Hospice Staff survey, completed by UK children’s hospice staff, and the Children’s Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory.
Results
There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51–65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = −0.31, p = 0.115). Burnout did not predict work engagement (b = −0.09, p = 0.194).
Significance of results
The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children’s hospices in the UK.
Nursing students often encounter real-life trauma situations during their clinical experience and similar workplace environment and climate as professional nurses. This research was carried out to determine the reflections of the compassion fatigue levels of nursing final year students on their psychological resilience levels.
Methods
This research was conducted as descriptive and cross-sectional. The sample of the study consists of 250 final year nursing students. Data were collected using Personal Information Form, Compassion Fatigue Scale, and Resilience Scale. It was determined that the compassion fatigue and psychological resilience levels of nursing final year students were moderate.
Results
It was determined that as the levels of compassion fatigue increased, psychological resilience decreased. A highly negative and significant correlation was found between the total and sub-dimension mean scores of compassion fatigue and psychological resilience (p = 0.001).
Significance of results
It was found that there was a negative and high level relationship between nursing students’ compassion fatigue levels and all its sub-dimensions and psychological resilience. Resilience can improve psychosocial functioning and professional performance, including for nursing students facing stressful clinical experiences. It is important to determine the compassion fatigue and psychological resilience levels of nursing students, to determine the existing problems, and to take initiatives for this.
Hope is a contextual concept that has significant effects on human well-being. This study aimed to evaluate the psychometric properties of the Persian version of the Herth Hope Index (P-HHI) among Iranian patients with cancer.
Method
This cross-sectional study was conducted on 320 patients with cancer from September to December 2020. After translating the HHI into Persian, content, convergent and discriminant, construct validity (exploratory and confirmatory factor analysis), and reliability of the P-HHI were assessed.
Results
The results of exploratory factor analysis showed that the P-HHI was composed of two factors: Life Expectancy and Thinking Positive, which explained 55.20% of the total variance.
Significance of results
The research revealed that the P-HHI has acceptable validity and reliability, which can be used to measure the hope concept among Iranian patients with cancer.
This study aimed to conduct a Turkish validity and reliability study of the Palliative Care Spiritual Care Competency Scale.
Methods
The sample of the study consisted of 354 nurses. In the first stage, the forward–backward translation method was used to develop the Turkish version of the Palliative Care Spiritual Care Competency Scale. The comprehensibility, purposefulness, cultural appropriateness, and discrimination of the scale items were evaluated with content validity. Confirmatory factor analysis (CFA) was applied to examine the construct validity of the scale. To evaluate the ability of the scale to give consistent results at different time intervals, the relationship between the scores obtained from the first and second applications was examined with the intraclass correlation coefficient (ICC). The reliability of the scale was evaluated with the Cronbach’s alpha reliability coefficient and item-total score correlation coefficients.
Results
The content validity index of the Palliative Care Spiritual Care Competency Scale was found to be 0.98 after expert opinion was obtained. The goodness-of-fit values of the scale were χ2/sd: 3.125; GFI: 0.915; AGFI: 0.875; IFI: 0.926; TLI: 0.905; CFI: 0.925; RMSEA: 0.078; SRMR: 0.054. As a result of CFA, some items were removed from the scale, and a Turkish version of the scale consisting of 14 items and three sub-dimensions was developed. The reliability of the scale over time was evaluated with the test-retest method, and it was found that the inter-response agreement was very good (ICC: 0.981; p < 0.001). The Cronbach’s alpha reliability coefficient of the scale was 0.89 and the Cronbach’s alpha reliability coefficient of the subscales ranged between 0.78 and 0.85.
Significance of results
It was determined that the Turkish version of the Palliative Care Spiritual Care Competency Scale is a short, easy-to-understand, and psychometrically sound measurement tool that can be safely applied to Turkish nurses.
Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients’ symptom burden and needs early but has not yet been validated in German. The aim was to culturally adapt and translate the IPOS Neuro-S8 into the German health-care context and evaluate its face and content validity.
Methods
Cultural adaptation study following the first 6 out of 8 phases of the Palliative care Outcome Scale measures manual: (1) conceptual definition, (2) forward translation to German, (3) backward translation to English, (4) expert review, (5) cognitive debriefing, (6) proofreading. Neurological patients needing palliative care and clinical staff of the Department of Palliative Medicine or Neurology of the University Hospital of Cologne were included. Data were analyzed using thematic content analysis and descriptive statistics.
Results
A total of 13 patients and 16 clinical staff participated in this study. The expert review panel (phase 4) consisted of 11 additional members. While patients (n = 9) and clinical staff (n = 11) confirmed that the IPOS Neuro-S8 is an intelligible tool that is well accepted (phase 5), some linguistic and cultural differences were found between the original English and German versions. These mainly concerned the items mouth problems and spasms.
Significance of results
The German version of the IPOS Neuro-S8 has demonstrated face and content validity and captures relevant symptoms of neurological patients needing palliative care. Its psychometric properties, including construct and criterion validity, will be investigated next.
Shortness of breath, or dyspnea, is the subjective experience of breathing discomfort and is a common, distressing, and debilitating symptom of lung cancer. There are no efficacious pharmacological treatments, but there is suggestive evidence that cognitive–behavioral treatments could relieve dyspnea. For this, understanding the psychological, behavioral, and social factors that may affect dyspnea severity is critical. To this end, patients with dyspnea were interviewed with questions framed by the cognitive–behavioral model—emphasizing thoughts, emotions, and behaviors as contributors and outcomes of dyspnea.
Methods
Two trained individuals conducted semi-structured interviews with lung cancer patients (N = 15) reporting current dyspnea. Interviews assessed patients’ cognitive–behavioral experiences with dyspnea. Study personnel used a grounded theory approach for qualitative analysis to code the interviews. Inter-rater reliability of codes was high (κ = 0.90).
Results
Thoughts: Most common were patients’ catastrophic thoughts about their health and receiving enough oxygen when breathless. Emotions: Anxiety about dyspnea was the most common, followed by anger, sadness, and shame related to dyspnea. Behaviors: Patients rested and took deep breaths to relieve acute episodes of dyspnea. To reduce the likelihood of dyspnea, patients planned their daily activity or reduced their physical activity at the expense of engagement in hobbies and functional activities.
Significance of results
Patients identified cognitive–behavioral factors (thoughts, emotions, and behaviors) that coalesce with dyspnea. The data provide meaningful insights into potential cognitive–behavioral interventions that could target contributors to dyspnea.
Diagnosing mental health challenges in bereavement is controversial; however, regardless of one’s position on this matter, assessments of bereaved individuals continue to occur in clinical and research contexts. It is critical for evaluations to account for contextual factors that are unique to bereavement. This paper summarizes considerations for diagnosing depression in bereaved individuals, focusing on use of the six-item Hamilton Depression Rating Scale (HAM-D6).
Methods
Following a literature review of the Hamilton Depression Rating Scale (HAM-D) and various versions, we summarized decision rules we used in scoring the HAM-D6 in a study of parents bereaved by cancer. We expanded on existing scoring guidelines for each of the HAM-D6 items, including depressed mood, work and activities, general somatic symptoms, guilt, psychic anxiety, and psychomotor retardation, and illustrated clinical distinctions and probes for assessors to consider through case examples from our research with bereaved parents.
Results
Considerations for assessing depressive symptoms and behavior changes in the context of bereavement were summarized. Symptoms that may be diagnostic of depression in some populations may reflect other factors in the bereaved, such as a change in priorities, social expectations surrounding grief, or avoidance of grief activators. Nuanced factors are important for assessors to consider when administering the HAM-D6 to bereaved individuals.
Significance of results
Our sharing of these considerations is not intended to promote diagnosis of depression in bereavement but to highlight the unique contextual factors that distinguish symptoms of depression from common experiences of grievers when applying an assessment tool such as the HAM-D6. While validated measures can be constraining, they can have clinical utility; they may increase standardization in research, help clinicians communicate with each other, advance the field more generally to understand the varying struggles bereaved individuals experience, and systemically facilitate access to services via managed care.