This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey.

This was a methodological study conducted with 222 pediatric nurses. Data were collected using the information form for pediatric nurses and the “stress scale for nurses performing end-of-life care for children.” Content and construct validity, item analysis, confirmatory factor analysis and internal consistency were used to evaluate the data. The Global Pharmaceutical Regulatory Affairs Summit checklist was followed in this study.

The content validity index of the scale was 0.93. Item-total score correlation values ranged from 0.594 to 0.885. The 5-factor structure of the scale was confirmed as a result of confirmatory factor analysis. Factor loads were greater than 0.30, and fit indices were greater than 0.80. The Cronbach’s alpha coefficient of the Turkish version of the scale was 0.97.

The stress scale for nurses performing end-of-life care for children is a valid and reliable measurement tool for the Turkish sample. This scale facilitates the assessment of the stress levels of pediatric nurses who provide end-of-life care to children. Also, this scale can be used in interventional studies to improve the well-being of pediatric nurses.

Definitions of spirituality abound; however, the importance of context and need for better understanding within health-care practice has been emphasized. In particular, the understanding of spirituality for nurses has been shown to have an impact both professionally and personally.

This study used a conceptual analysis to explore the understanding of spirituality by German-speaking nurses in an educational context.

A total of 91 nursing students (83.5% female, 16.5% male) took the spiritual care course between January 2022 and January 2023. The majority of participants (n = 63, 69.6%) were in the 26- to 40-year age bracket, 50 (54.9%) identified themselves as Christian, 15 (16.5%) chose other, 12 (13.2%) atheist, 6 (6.6%) humanist or agnostic, and 2 (2.2%) Buddhist. A conceptual analysis of nursing students’ written responses to the question “What is spirituality to me?” was conducted. Two overarching categories were identified. The first category was titled “What aspects or characters are linked to spirituality?” and included 5 subcategories: people, life, experience, a sense of security, and capacity. The second category was titled “How is spirituality experienced, practiced and lived?” and included 5 subcategories: sometimes just a hug, to align one’s life with that purpose, to be content with myself, conscious attention to oneself, and demarcation from religion. These subcategories were interrelated to one another.

These findings have implications for how spirituality is introduced in nursing education.

Caregiving for family members at their end of life is stressful. Caregivers’ strain, burden, or stress has been measured in various geographical and sociodemographic contexts. The concept of stress, burden, and strain are sometimes used interchangeably. By analysing the factor structure of the Chinese version of the Modified Caregiver Strain Index (C-M-CSI), this study aimed to examine the caregiving strain concept and its demographic correlates.

A sample of 453 family caregivers of patients with a terminal illness in Hong Kong was employed. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. In addition, generalized linear models (GLM) were used to examine the demographic correlates.

The EFA yielded a 3-factor model termed “Perception of Caregiving,” “Empathetic Strain,” and “Adjustment Demand.” This 3-factor model explained 50% of the variance and showed good internal consistency. The CFA confirmed the 3-factor construct with satisfactory internal reliability (χ2 [61, N = 226] = 108.86, p < 0.001, CFI = 0.96, TLI = 0.95, SRMR = 0.04, and RMSEA = 0.06). Inspired by this factor structure and concepts of stress and strain from engineering discipline, a new model of caregiver strain is proposed. Additionally, family caregivers of non-cancer patients, who were not living with the patient, or younger were associated negatively with different dimensions of caregiver strain.

The results gave insights into the advancement of the conceptualization of caregiver strain, its multidimensional nature, and process of change, which inform directions for future research and practices.

Body image adjustment is a crucial issue for patients with facial cancer, but body image–specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention’s feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL).

Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann–Whitney U tests as appropriate.

Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (−1 vs. −8.3, p = 0.033) compared to control group.

Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses.

The research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (n = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the “lavaan” package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker–Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity.

Asymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3.

This instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.

Hematopoietic stem cell transplantation (HSCT) or intensive chemotherapy for the treatment of malignant diseases is a highly distressing experience. The affected person’s resilience is crucial to coping with this challenging experience. Experience with resilience-enhancing interventions in children and young adults during cancer therapy is scarce. The major objective of this work was developing and evaluating an effective psycho-oncological mental training that complements the standard psychosocial care.

In this prospective, randomized single-center study, a total of 30 patients (12 to 22 years of age) who underwent HSCT or high-dose chemotherapy received either the standard psychosocial care (control group [CG]) or additionally underwent a novel and specifically developed resilience-enhancing 14-session mental training (therapy group [TG]). The patients were observed over an 8-month period and were screened for distress, thyroid, and immune function parameters, as well as generalized anxiety, affect, and sports orientation.

Patients of the TG showed significantly greater improvements in all assessed mental aspects, including anxiety, affect, competitiveness, win orientation, goal orientation, self-optimization, self-blocking, and loss of focus, as well as cortisol levels within 8 months, as opposed to patients of the CG (effect size range ξ: 0.74–1.00).

Patients who underwent the mental training displayed less anxiety, better affect, and improved mental performance with less self-blocking. This resulted in improved goal orientation, competitiveness, self-optimization, and focus when compared to the CG patients. However, larger prospective trials are necessary to substantiate these findings.

This study examined potential predictors of persistent depressive symptoms in a cohort of seriously ill older adults (aged 65+ years) receiving home care services.

This was a retrospective cohort study using secondary data collected from the Resident Assessment Instrument for Home Care for all assessments completed between 2001 and 2020. The cohort included seriously ill individuals with depressive symptoms at baseline and who continued to have depressive symptoms on reassessment within 12 months (n = 8,304). Serious illness was defined as having severe health instability, a prognosis of less than 6 months, or a goal of care related to palliative care (PC) on admission to the home care program.

The mean age of the sample was 80.8 years (standard deviation [SD] = 7.7), 61.1% were female, and 82.1% spoke English as their primary language. The average length of time between assessments was 4.9 months (SD = 3.3). During that time, 64% of clients had persistent symptoms of depression. A multivariate logistic regression model found that language, pain, caregiver burden, and cognitive impairment were the most significant predictors of experiencing persistent depressive symptoms.

Persistent depressive symptoms are highly prevalent in this population and, left untreated, could contribute to the person experiencing a “bad death.” Some of the risk factors for this outcome are amenable to change, making it important to continually assess and flag these factors so interventions can be implemented to optimize the person’s quality of life for as long as possible.

To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home.

To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities.

Analysis of stakeholders’ insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital.

Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers’ structural imaginations about what it means to die well at home in Canada.

Pediatric health-care workers often care for families of minority religious backgrounds, but little is known about their perspective in providing culturally and spiritually appropriate care for Muslim patients. We aimed to (1) characterize the attitudes, knowledge, and skills of health-care workers in the care of critically ill Muslim children and (2) evaluate preferences for different educational interventions to improve care of critically ill Muslim children.

We administered a single-center, cross-sectional, 33-question, electronic survey of interdisciplinary health-care workers in a large pediatric intensive care unit in New York City to characterize their attitudes, knowledge, and skills in caring for critically ill Muslim children.

Of 413 health-care workers surveyed, there were 109 (26%) respondents. Participants responded correctly to 51.7 ± 22.2% (mean ± SD) and 69.2 ± 20.6% of background knowledge and clinical skills questions, respectively. Only 29.8% of participants perceived adequate institutional resources to provide culturally competent care to Muslim patients and their families. Participants identified end-of-life care (47.5%) and bioethical concerns (45%) as needed areas for additional institutional resources. When asked about support to aid in caring for Muslim patients, 43.4% of participants requested a team of Muslim health-care workers to provide guidance. Participants most often requested video-based training modules (32.5%) and written materials (30%) as potential educational interventions.

We identify gaps in health-care worker knowledge and skills in the care of the critically ill Muslim child. We also describe possible areas for intervention to facilitate culturally and spiritually appropriate care delivery to Muslim children and families.

There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes.

The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words.

As a part of a larger study that included cognitive interviewing, we asked the question “what does the word healing mean to you?” Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities.

Thirty participants responded to the question “what does healing mean to you?” Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes.

Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients’ definitions provide greater insight into perceptions and expectations regarding the healing process.

This study aims to explore the place of the relative in these triadic consultations and how this influences communication.

A mixed-methods research strategy was used. Triadic consultations for the announcement of cancer progression were recorded and following the 3 participants completed questionnaires comprising mirror-items. Recordings and answers were further investigated in a few semi-structured interviews. Comparison of quantitative responses (questionnaires) used Wilcoxon’s test for matched series. Qualitative analyses (consultations, interviews) used grounded theory. Patients were over 18, followed for cancer in palliative phase, excluding brain tumors and malignant hemopathies, and presented renewed disease progression. Relatives were over 18 and authorized by the patient to participate.

47 consultations (audio-recordings, answers to questionnaires) and 12 interviews conducted separately with 4 triads were collected. Half the relatives, while remaining in the background, nevertheless contributed to the discussion. For patients, the presence of a relative was considered beneficial and for oncologists it facilitated the announcement. However, symptoms perceived as intimate or private appeared difficult to express for some patients, and for relatives, prognosis was a difficult subject to broach. Although their relationship with time and their expectations may differ, patients and relatives found consultations positive. Oncologists appeared to underestimate the patient’s level of understanding (P<0.001) and perceptions of the seriousness of the disease (P=0.009) but not those of relatives. They did not evaluate the relative’s state of health and check what the dyad had retained.

Training via simulation sessions should be adapted to communication involving relatives.

The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data.

Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points.

The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure–related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points.

Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.

To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication.

An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children’s Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors.

Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: “Approaches clinicians can use to lay the foundation for quality communication” including checking in, validation, aligning with hopes and a commitment to listening and being present; and “Approaches clinicians can use to aid the delivery of information” including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician’s experience.

This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents’ needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.

This study was conducted to determine the effects of illness perception on death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer.

This cross-sectional and correlational study was conducted with 125 patients with cancer who were admitted to the oncology clinic of a university hospital in the Central Anatolian Region of Turkey between March and December 2022 and who met the research criteria and accepted to participate in the study. The data were collected with “Patient descriptive information form,” “Brief Illness Perception Questionnaire (BIPQ),” “Scale of Death Anxiety (SDA),” and “Satisfaction with Life Scale (SWLS).”

It was found that mean BIPQ score of the patients was 39.54 ± 12.82, the mean SDA score was 8.02 ± 3.16, and the mean SWLS score was 14.74 ± 5.19. BIPQ total score was found to affect SDA total score positively (β = .751) and SWLS total score negatively (β = − .591). SDA total score was found to affect SWLS total score negatively (β = −.216) (p < .05).

It was found that patients with advanced gastrointestinal cancer had moderate level of illness perception and life satisfaction, and high death anxiety. It was found that as illness perception of the patients increased, their death anxiety increased and satisfaction with life decreased. In addition, it was found that as the death anxiety of patients increased, their satisfaction with life decreased.

Limited evidence investigates how knowledge, misconceptions, and beliefs about palliative care vary across patients with cancerous versus non-cancerous chronic disease. We examined the knowledge of and misconceptions about palliative care among these groups.

We used weighted data from the National Cancer Institute Health Information National Trends Survey 5 (Cycle 2) for nationally representative estimates and logistic regression to adjust for respondent characteristics. We identified respondents who reported having (1) cancer ([n = 585]; breast, lung, and colorectal), (2) chronic conditions ([n = 543]; heart failure, lung disease, or chronic obstructive pulmonary disorder), or (3) neither cancer nor other chronic conditions (n = 2,376).

Compared to cancer respondents, chronic condition respondents were more likely to report being Black or Hispanic, report a disability, and have lower socioeconomic status. In the sample, 65.6% of cancer respondents and 72.8% chronic conditions respondents reported they had never heard of palliative care. Chronic condition respondents were significantly (p < 0.05) less likely to report high palliative care knowledge than cancer respondents (9.1% vs. 16.6%, respectively). In adjusted analyses, cancer respondents had greater odds of high palliative care knowledge (odd ratio [OR] = 1.70; 95% confidence interval [CI] = 1.01, 2.86) compared to respondents with neither cancer nor chronic disease; chronic condition respondents did not have increased odds (OR = 0.96; CI = 0.59, 1.54).

Disparities in palliative care knowledge exist among people with non-cancerous chronic disease compared to cancer. Supportive educational efforts to boost knowledge about palliative care remains urgent and is critical for promoting equity, particularly for underserved people with chronic illnesses.

Palliative care can improve the quality of life of adolescents and young adults (AYA) with cancer. However, little is known about the utilization of palliative care among AYA cancer patients. Identifying factors associated with the utilization of palliative care could inform efforts to improve palliative care access among AYA patients living with cancer.

Using data from the National Inpatient Sample 2016–2019, a representative sample of US hospitalizations, we examined palliative care encounters and associated characteristics among hospitalizations of AYA with cancer and high inpatient mortality risk. Survey design–adjusted bivariate and multivariable logistic regression models were used to examine associations of patient- and hospital-level characteristics with palliative care.

Of 10,979 hospitalizations by AYA cancer patients with high mortality risk, 19.9% received palliative care services between 2016 and 2019. After adjusting for all characteristics, independent predictors of palliative care use were as follows: older age (25–39 years old vs. 25–39 years; odds ratio [OR] 1.31, 95% confidence interval [CI] 1.15–1.49), Hispanic/Latinx (vs. non-Hispanic White; OR 1.16, 95% CI 1.01–1.34), female (vs. male; OR 1.27, 95% CI 1.14–1.41), public insurance (vs. private insurance; OR 1.23, 95% CI 1.10–1.38), hospital location in the US South (vs. Northeast; OR 0.78, 95% CI 0.66–0.94), and a large hospital (vs. small; OR 0.83, 95% CI 0.72–0.96).

Less than 20% of AYAs with cancer and high risk of mortality received inpatient palliative care services. Further research is needed to explore the reasons for lower palliative care utilization in the younger age groups.

Timely, effective and personalized identification of the multidimensional needs in patients with advanced cancer are major goals of appropriate palliative care (PC) delivery. However, there is considerable variation in structures, processes, and patient demographics that might influence the intensity of end-of-life care. This study aims to characterize patterns in clinical and demographic characteristics at the inception point and their association with the intensity of care during the last month of life in advanced cancer patients assisted at home.

Cancer patients entered in home PC during 2020 in Italy were considered. The association between home PC services during the last month of life (primary outcome) and demographic data, performance status (Karnofsky Performance Score [KPS]), symptoms, and therapies at the entry was explored in this retrospective study.

Among 1,721 consecutive patients (919 in Centre-North and 802 in Centre-South Italy), patients from Centre-South were younger (p < 0.001), had worse KPS (p < 0.001), and shorter survival (p = 0.010). Patient age was inversely associated with the number of total/physician/nurses services during the last month of life (p < 0.001, p = 0.001, and p = 0.008, respectively). Patients with severe symptoms (asthenia, pain, and anxiety) at inception needed more PC services at the end of life (p = 0.026, p = 0.008, and p = 0.038, respectively). The distribution of workload differed according to the geographical area, with higher number of PC services provided by physicians (p < 0.001) in Centre-North and by nurses (p = 0.002) in Centre-South.

These findings highlight major disparity in access and nature of PC in a country with universal access to health services. Studies aimed at comparing PC models among different countries should pay attention to the local heterogeneity within each health-care system.

Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.

This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.

Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.

Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

This pilot project replicated a self-compassion program to support health-care professionals in palliative care settings. We anticipated that undertaking this program would enhance participants’ psychological well-being.

Participants were recruited by convenience sampling from palliative care services in an area of Melbourne, Australia. Because of the COVID-19 pandemic, the program was offered online and comprised six once-weekly gatherings. Three survey rounds with identical questions were conducted prior to, immediately after, and 3 months after the training. The surveys consisted of 6 scales: the Self-Compassion Scale, the Santa Clara Brief Compassion Scale, the Cognitive and Affective Mindfulness Scale, the Depression Anxiety Stress Scale, the Professional Quality of Life Scale, and the Interpersonal Reactivity Index Scale. Paired-sample t-test and repeated measures analysis of variance analyses were used to compare participant responses.

Nine participants working in palliative care completed the training and 3 surveys and included qualitative responses. The experience was overwhelmingly positive. Self-compassion (F = 14.44; p < 0.05) and mindfulness (F = 18.44; p < 0.05) scores significantly increased post-training, were picked up in a short time and endured. The emotional state improved by compassion satisfaction, showing a positive improvement 3 months post-training, along with there being no changes in compassion satisfaction, burnout, and dispositional empathy.

Participants all worked in a supportive environment, which encouraged self-care. Even against the pandemic difficulties, a short online program was effective, assisting participants to cultivate their inner resources in mindfulness and self-compassion. While a small sample size, expansion of the training may benefit the wider palliative care workforce.