Chaplains provide spiritual care in a variety of settings and are an important part of palliative and supportive care teams. This study aims to describe chaplain interactions from the perspective of the recipients of care.

The study draws on data from a nationally representative survey conducted by the Gallup Organization in March 2022.

Two main groups of recipients were identified: primary recipients and visitors/caregivers. Current typologies of chaplain activities focus on primary recipients of care, but a similar proportion of chaplain interactions takes place with visitors/caregivers. Bivariate analysis was used to compare the experiences of the chaplains’ primary recipients of care to other recipients of care and the experiences of visitors/caregivers to other recipients of care. Primary recipients of care were significantly more likely to have religious interactions with the chaplain and to experience the interactions as valuable and helpful.

This study is the first to show the groups of people – primary recipients and visitors/caregivers – who receive care from chaplains. It demonstrates how care recipients experience care differently from chaplains based on their position, which has important implications for spiritual care practice.

With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson’s carative model.

Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed (n = 3393) using Google NLP.

Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), “Treating the patient with respect” (+.54), and “Emotional, spiritual, bereavement support” (+.60). Lowest sentiment scores were “Insurance, administrative or billing” (–.37), “Lack of staffing” (–.32), and “Communication with the family” (–.01).

In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

The study had a pre–post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness – Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention’s potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.

Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.

Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

This study aimed to explore the clinical characteristics of amyotrophic lateral sclerosis (ALS) patients in Spain’s north-eastern region, their inclusion in chronic care programmes, and their psychosocial and spiritual needs (PSNs).

A longitudinal descriptive study in adult patients with ALS. We analyzed clinical variables and participation in chronicity and PSNs assessment using the tool Psychosocial and Spiritual Needs Evaluation scale in end-of-life patients (ENP-E scale).

81 patients (average age 65.6 ± 11.7) were studied. At the study’s outset, 29.7% employed non-invasive ventilation (NIV), increasing to 51.9% by its conclusion. Initial percutaneous endoscopic gastrostomy (PEG) utilization was 14.8%, rising to 35.85%. Chronic care programme participation was as follows: home care (24.7% initially, 50.6% end), palliative care (16% initially, 40.7% end), case management (13.6% initially, 50.6% end), and advance care planning registration (6.2% initially, 35.8% end). At study start, 47.8% of patients (n = 46) showed moderate-to-severe complexity in PSNs assessment using the ENP-E scale, without showing differences in age, sex, and time of evolution; whereas, on the evolutionary analysis, it was 75% (n = 24). A higher evolutionary complexity was observed in males <60 and >70 years, with no PEG and evolution of ALS of <2 and ≥5 years, and not included in chronicity programmes. When assessing concerns, physical pain and family aspects stand out in all measurements. Forty-eight percent of patients at study start and 71% at end of study showed external signs of emotional distress.

Most ALS patients showed a high degree of complexity and were not integrated in chronicity programmes. A “care path” is proposed to integrate ALS patients in these programmes and systematically assess their needs.

This qualitative study aimed to investigate communication about death in consultations with patients undergoing chemotherapy with no curative intent. Specifically, we examined (i) how the topic of death was approached, who raised it, in what way, and which responses were elicited, (ii) how the topic unfolded during consultations, and (iii) whether interaction patterns or distinguishing ways of communicating can be identified.

The data consisted of 134 audio-recorded follow-up consultations. A framework of sensitizing concepts was developed, and interaction patterns were looked for when death was discussed.

The subject of death and dying was most often initiated by patients, and they raised it in various ways. In most consultations, direct talk about death was initiated only once. We identified 4 interaction patterns. The most frequent consists of indirect references to death by patients, followed by a direct mention of the death of a loved one, and a statement of the oncologists aiming to skip the subject.

Patients and oncologists have multiple ways of raising, pursuing, addressing and evacuating the subject of death. Being attentive and recognizing these ways and associated interaction patterns can help oncologists to think and elaborate on this topic and to facilitate discussions.

Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP.

We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework.

Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning.

Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants’ perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.

As the US tests models of care for the seriously ill, patient perceptions of the quality of care are important. Proxies are often needed for this group. We sought to understand the potential impact of proxy reports for the assessment of care quality and experience in cancer.

Secondary data analysis of a deidentified prospective study that included surveys of perceived care quality, including symptom management, from patients with advanced cancer receiving chemotherapy and their caregivers. Surveys were administered at diagnosis (time 1) and treatment (time 2), with top-box scoring used for analysis. Overall concordance was assessed using metrics including Gwet’s AC1. The proportion of the highest scores by respondent type within 2 subgroups were examined: (1) symptom burden and (2) practice setting.

Data from 83 dyads were analyzed. Proxies and patients frequently reported the highest scores for quality (time 1: proxies: 77% and patients: 80%). At time 1, 14% of proxies and 10% of patients reported an unmet need for symptom palliation. Most patients reporting an unmet need gave the top score for quality (75%), but fewer proxies did so (45%). Proxy and patient reports were similar within practice settings. Concordance was at least moderate (nearly all outcomes >0.5 and some >0.8) by Gwet’s AC1.

Findings of at least moderate concordance and similar experience outcomes within subgroups suggest the use of proxies may not change estimates substantially. However, consideration should be taken when evaluating symptom management, particularly if such evaluations inform assessment of provider performance.

Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors’ engagement with survivorship care.

We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.

We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.

Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors’ anxieties about their future health.

The article aims to investigate the feasibility, acceptability, and initial efficacy of a short-term 3-day art therapy group for children who have experienced parental death to cancer.

The study utilized a pretest–posttest design and included children (n = 20) aged 7–12 years. The feasibility of the intervention was measured by recruitment ability, study compliance, and intervention adherence, while acceptability was assessed using a child-reported satisfaction survey. Efficacy was examined using the child-reported Pediatric Quality of Life Inventory (PedsQL), while the emotional, social, and behavioral functioning of children was measured using the parent-reported Strengths and Difficulties Questionnaire. Paired sample t-tests were used for analyses.

The intervention was found to be feasible (80% recruitment rate and 100% session adherence). Acceptability was high, and all participants were satisfied and found the intervention to be helpful. While results did not reach statistical significance, improvements in psychosocial and physical quality of life were reported by all the children post-intervention and at the 3-month follow-up. Parent-reported a decrease in behavioral difficulties scores and an increase in prosocial behavior scores at post-intervention and at the 3-month follow-up.

The 3-day art therapy group intervention was shown to be feasible to conduct and acceptable to the recipients. The intervention shows promise in improving post-death adjustment and quality of life outcomes of children bereaved by parental death due to cancer that were maintained after 3 months. The use of art therapy groups to ameliorate difficulties associated with parental loss and to assist children in coping day-to-day difficulties should be further investigated.

To evaluate the effectiveness of spiritual care training on medical students’ self-reported competencies.

This is a quasi-experimental (controlled and non-randomized) study including 115 Brazilian medical students. Participants were enrolled into 2 groups: fourth-year students (n = 64) who received spiritual care training and sixth-year students (n = 51) who did not receive this training – control group (i.e., usual teaching). Participants answered a self-reported Spiritual Care Competence Scale. Comparisons between groups were performed and effect sizes were reported.

Providing a spiritual care training resulted in significantly higher self-reported scores for the dimensions of “Assessment” (d = 0.99), “Improvement of care” (d = 0.69), “Counseling (d = 0.88),” “Referral” (d = 0.75), and “Total Spiritual Care” (d = 1.044) as compared to the control group. Likewise, 21 out of 27 items of the Spiritual Care Competence Scale were significantly higher for the intervention group, presenting effect sizes (d) ranging between 0.428 and 1.032.

Medical students receiving spiritual care training showed greater self-reported competencies as compared to those in the usual teaching. These results reinforce the importance of promoting spirituality teaching in medical schools.

Parents of medically complex children juggle unique demands associated with caring for chronically ill children, many of which negatively impact their mental wellbeing. Despite this, parents of medically complex children often forgo mental health support due to concerns with costs, time, stigma, and accessibility. There is limited research on evidence-based interventions addressing such barriers for these caregivers. We piloted an adapted version of Mood Lifters, a peer-led wellness program, to equip parents of medically complex children with evidence-based strategies to manage their mental health while also reducing barriers to support. We hypothesized parents would find Mood Lifters to be feasible and acceptable. Further, parents would experience improvements in mental wellbeing upon program completion.

We conducted a single-arm prospective pilot study to assess Mood Lifters for parents of medically complex children. Participants included 51 parents in the U.S. recruited from a local pediatric hospital providing care for their children. Caregiver mental wellbeing was assessed through validated questionnaires pre-intervention (T1) and post-intervention (T2). Repeated-measures analysis of variance was conducted to evaluate change between T1 and T2.

Analyses from T1 and T2 (n = 18) revealed improvements in parents’ depression (F(1,17) = 7.691, p = 0.013) and anxiety (F(1,17) = 6.431, p = 0.021) after program completion. Improvements in perceived stress and positive and negative emotion were significant at p < 0.0083.

Parents of medically complex children experienced improved mental health upon participating in Mood Lifters. Results offer preliminary support for the feasibility and acceptability of Mood Lifters as an evidence-based care option that may also alleviate common barriers to care.

A resurgence of research investigating the administration of psychedelic compounds alongside psychotherapy suggests that this treatment is a promising intervention for anxiety, depression, and existential distress in people with cancer. However, psychedelic treatment that induces a mind-altering experience potentially poses barriers to vulnerable cancer patients, and health-care practitioners may have concerns about referring their patients to trials investigating this approach. The aim of the current study was to investigate the perceptions of cancer health-care practitioners based in New Zealand and the USA related to psychedelic-assisted therapy.

This study utilized a cross-sectional survey of cancer health-care practitioners in New Zealand and the USA via convenience sampling to identify their perceptions about the concept of conducting psychedelic-assisted therapy with cancer patients.

Participants perceived that (1) psychedelic-assisted therapy has the potential to provide benefit for cancer patients, (2) research in this area across a variety of domains is important, (3) work should consider spiritual and indigenous perspectives of health, and (4) there was willingness to refer patients to trials in this area, especially patients with advanced disease who were no longer going through curative treatment. Participants in the USA had greater awareness of psychedelics than the New Zealand sample; however, New Zealand participants more strongly believed that spiritual/indigenous factors should be considered in psychedelic-assisted therapy.

Cancer health-care practitioners in our sample considered research investigating the potential for psychedelic-assisted therapies to be important and may be more open to studies that start in palliative and end-of-life contexts.

In this study, we assessed the patient–oncologist relationship, conceptualized as the working alliance from a dyadic perspective, and its relation to locus of control.

One hundred and three oncologist–patient dyads were recruited. Measures included a sociodemographic and medical questionnaire; the “internal, powerful others, and chance” locus of control scale; and the working alliance inventory.

Application of the actor–partner interdependence model yielded 2 actor effects: a positive association between oncologist “internal” locus of control and oncologist working alliance, and a negative association between oncologist “chance” locus of control and oncologist working alliance. It also yielded one partner effect: a positive association between oncologist “internal” locus of control and patient working alliance.

The actor–partner effect suggests that oncologists’ locus of control has a role in the establishment of the patient–oncologist working alliance; oncologists’ internal locus of control is a dominant factor affecting not only their own perceived alliance but patients’ perceived alliance as well.

Receiving bad news about one’s health can be devastating, yet little is known about how the therapeutic nature of the environment where bad news is delivered affects the experience. The current study aimed to explore how patients and their families were affected by the language and the built, natural, social, and symbolic environments when receiving bad news, through the Therapeutic Landscapes theoretical framework.

Patients diagnosed with a life-limiting illness living in regional Victoria who had a hospital admission within 24 months and a diagnostic/prognostic conversation were invited to participate, as well as a family member who witnessed the conversation. Participants were recruited through social media and snowballing, resulting in 14 online semi-structured interviews being conducted between November 2021 and March 2022, audio-recorded, and transcribed verbatim. Reflexive thematic analysis was used to develop the themes.

Fourteen semi-structured interviews were conducted with women aged between 30 and 77 years. Interviews lasted between 45 and 120 minutes, with an average of 69 minutes, and were conducted online or via mobile phone. Four central themes were developed: “Hearing bad news for the first time,” “Preferences for having hard conversations,” “Creating a sense of safety for ongoing care,” and “The therapeutic nature of the ward.”

This body of work will help inform practice and future policy regarding bad news delivery and the design and aesthetics of environments where bad news is delivered. It is essential that bad news is delivered within a quiet, calm, and emotionally safe environment within a supportive therapeutic relationship.

Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers’ burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer.

This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates.

Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers’ spirituality on the relationship between depression and caregiver burden over time (b = −1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support.

Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients’ health.

To evaluate the sensitivity and specificity of the Distress Thermometer (DT) as a screening tool for emotional distress in oncological palliative care patients and to compare the DT with the Edmonton Symptom Assessment System-revised (ESAS-r) and the gold standard to determine the most appropriate assessment method in palliative psychological care.

Data were collected from psychological screening tests (ESAS-r and DT), and clinical interviews (gold standard) were conducted by a clinical psychologist specialist in palliative oncology from January 2021 to January 2022 in an oncology palliative care service.

The sample consisted of 356 first-time patients with a diagnosis of advanced cancer in palliative care. The most frequently reported oncological diagnoses were gastrointestinal tract (49.3%) and breast (18.3%). Most patients were female (n = 206; 57.9%), 60.4% were married/with a partner, 55.4% had between 6 and 9 years of schooling, and a median age of 57 (range, 46–65) years. The cutoff of the DT was 5, with a sensitivity of 75.88% and specificity of 54.3%. Emotional problems (sadness and nervousness) had a greater area under the curve (AUC) when measured using the DT than the ESAS-r; however, only in the case of the comparative sadness and discouragement was the difference between the AUC marginally significant.

The use of the DT as a screening tool in oncological palliative care is more effective in the evaluation of psychological needs than the ESAS-r. The DT, in addition to evaluation by an expert psychologist, allows for a more comprehensive identification of signs and symptoms to yield an accurate mental health diagnosis based on the International Classification of Diseases-11th Revision and/or Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition.

Prolonged distress is a risk factor for burnout among health-care providers (HCP) and may contribute to demoralization. We examined sources of distress during the COVID-19 pandemic and associations with demoralization.

This prospective cross-sectional survey of HCP was conducted among palliative care providers of an academic medical center. Participants completed a survey evaluating sources of distress and the Demoralization Scale-II (DS-II) to measure the intensity of demoralization.

Of 106 eligible participants, 74 (70%) completed the survey. DS-II median (range) score was 2 (0–19). There were no statistically significant associations with demographic characteristics. Participants reported high rates of distress for multiple reasons and high rates of sense of fulfillment (90%) and satisfaction (89%) with their profession.

Our study identified high levels of distress but low demoralization rates. Further study to evaluate fulfillment and satisfaction as protective factors against demoralization and burnout is indicated.

Family caregivers’ (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative’s conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs’ experience of communication with NH staff during the COVID-19 pandemic from admission to end of life.

A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed.

Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs’ need to interact with health-care professionals they trusted. Knowledge of residents’ preferences mitigated FCs’ turbulent emotions throughout the overall caregiving trajectory.

Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents’ care preferences should be encouraged.

Voluntary assisted dying (VAD) was legalized in Victoria, Australia, in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing VAD. This study examines data from doctors who completed the mandatory training in the first 2 years of the VAD system's operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes toward VAD participation, and their experiences of the mandatory training.

Through the online training, doctors completed a short demographic survey and undertook formal assessment of knowledge (90% pass mark). They also were invited to complete an optional survey evaluating the training.

In total, 289 doctors passed the training, most commonly males (56%) aged 36–65 years (82%) from an urban location (72%). Most were more than 10 years post fellowship (68%) and practising as general practitioners (51%) or medical oncologists (16%). The training most commonly took 6 h (range 2 h to over 9 h). Most doctors passed the assessment at the first (65%) or second (19%) attempt. Almost all participants (97%) found the training helpful or very helpful and most reported being confident or very confident in their knowledge (93%) and application (88%) of the VAD legislation.

Doctors reported the training was helpful and improved their confidence in knowing the law and applying it in clinical practice. The profile of trained doctors (particularly their location and specialty) suggests continued growth of participating doctors is needed to facilitate patient access to VAD. It is important that this safeguard does not discourage doctors’ participation.