The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS).

We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS).

The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument.

The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

The experience of living with dying has attracted limited research. We utilized interpretive phenomenological analysis to explore the lived experience of individuals with terminal cancer receiving palliative care in Ireland.

Participants were purposely selected from public interviews that had been conducted between 2006 and 2011. The study included the accounts of eight participants (N = 8; six females and two males) with a diagnosis of terminal cancer. Participant ages ranged from 36 to 68 years.

Three master themes emerged from the analysis: the personal impact of diagnosis, the struggle in adjusting to change, and dying in context. The results revealed that participants were still living while simultaneously dying. Interestingly, participants did not ascribe new meaning to their lives. The terminal illness was understood within the framework of the life that had existed before diagnosis. They strove to maintain their normal routines and continued to undertake meaningful activities. Management of unfinished business and creation of a legacy were salient tasks. Social withdrawal was not present; rather, participants engaged in emotional labor to sustain valued roles. However, we found that within the public domain there is a paucity of education and discourse supporting individuals at the end of life. The hospice was noted as an important external resource. Each participant experienced a unique dying process that reflected their context.

Healthcare professionals need to recognize the subjectivity of the dying process. Dying individuals require support and options to maintain their personhood.

In the biopsychosocial approach, perceived social support has served as a protective factor for psychological adjustment to cancer. This study aimed to determine the influence of different coping responses and health-related quality of life (HRQoL) domains on perceived social support during cancer treatment.

A cross-sectional analysis was carried out in a sample of 757 cancer outpatients. The Medical Outcomes Study Social Support Survey (MOS–SSS) was employed to assess perceived social support. The Mental Adjustment to Cancer (MAC) Scale measured coping response, and HRQoL was tested with the Medical Outcomes Study Short Form–36 (SF–36). Multivariate analyses were carried out to examine the extent to which coping and HRQoL were associated with perceived social support.

Coping response explained only 2% of the variance in perceived social support, but Hopelessness had a significant influence on perceived social support (p ≤ 0.01). HRQoL, physical, and mental domains made a significant contribution toward perceived social support, accounting for around 10% of total variance. More than coping response, HRQoL's physical and mental domains had an important influence on perceived social support during cancer treatment.

The findings of the current study report the importance of HRQoL domains in predicting perceived social support during cancer treatment, emphasizing the holistic and multidisciplinary approach to facilitate adjustment to cancer.

Health-related quality of life (HR-QoL) of patients with heart failure (HF) is low despite the aim of HF treatment to improve HR-QoL. To date, most studies have focused on medical and physical factors in relation to HR-QoL, few data are available on the role of emotional factors such as dispositional optimism. This study examines the prevalence of optimism and pessimism in HF patients and investigates how optimism and pessimism are associated with different patient characteristics and HR-QoL.

Dispositional optimism was assessed in 86 HF patients (mean age 70 ± 9 years, 28% female, mean left ventricular ejection fraction 33%) with the Revised Life Orientation Test (LOT-R). HR-QoL was assessed with the Minnesota Living with Heart Failure Questionnaire and the EuroQol.

The (mean ± SD) total score on the LOT-R was 14.6 ± 2.9 (theoretical range 0–24) and the scores on the subscales optimism and pessimism were 8.1 ± 1.9 and 5.5 ± 2.5, respectively. Higher age was related to more optimism (r = 0.22, p < 0.05), and optimism was associated with higher generic HR-QoL (B = 0.04, p < 0.05).

The association found between optimism and generic HR-QoL of HF patients can lead to promising strategies to improve HF patients’ HR-QoL, particularly because the literature has indicated that optimism is a modifiable condition.

The present study sought to explore the role of meaning making and high-level construal in the relationship between meaning discrepancy and posttraumatic growth among Chinese cancer patients.

The participants were 193 individuals diagnosed with cancer. Meaning discrepancy, meaning making, high-level construal in meaning making, and posttraumatic growth were measured. Bootstrapping and structural equation modeling were performed to test the mediation effects of high-level construal on the meaning-making process.

Mediation analysis revealed that perceived discrepancies were associated with individuals' meaning-making efforts. Meaning-making efforts prompted participants to adopt a high-level construal orientation, which in turn enhanced posttraumatic growth.

Our study empirically tested construal level theory in a population suffering from severe chronic trauma. The results demonstrate the important role of high-level construal in the meaning-making process of cancer patients, suggesting a specific effective strategy to foster posttraumatic growth. It seems encouraging to indicate that adopting such high-level construal may be included as part of psychological interventions for cancer patients.

The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.

A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.

A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.

There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

Pain and delirium are commonly reported in older people with advanced cancer. However, assessing pain in this population is challenging, and there is currently no validated assessment tool for this task. The present retrospective cohort study was conducted to understand how healthcare workers (HCWs; nurses and physicians) determine that older cancer patients with delirium are in pain.

We reviewed the medical records of consecutive palliative care inpatients, 65 years of age and above (N = 113), in order to identify patient-based cues used by HCWs to make pain judgments and to examine how the cues differ by delirium subtype and outcome.

We found that HCWs routinely make judgments about pain in older patients with delirium using a repertoire of strategies that includes patient self-report and observations of spontaneous and evoked behavior. Using these strategies, HCWs judged pain to be highly prevalent in this inpatient palliative care setting.

These novel findings will inform the development of valid and reliable tools to assess pain in older cancer patients with delirium.

Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician–patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect.

A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians.

Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices.

With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care.

The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results.

Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes.

Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure.

The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.

Wernicke encephalopathy (WE) is a neuropsychiatric disorder caused by thiamine deficiency. Several reports of WE in cancer patients are known. WE is sometimes overlooked because most patients do not exhibit its typical symptoms (e.g., delirium, ataxia, ocular palsy). If delirium is not present, a diagnosis of WE is difficult because delirium is the hallmark symptom of WE.

Taken from a series on WE in cancer, we report two patients who developed WE without delirium during periodic psycho-oncology outpatient visits.

Case 1. A 61-year-old woman with non-Hodgkin lymphoma who was periodically attending a psycho-oncology outpatient clinic developed an unsteady gait. WE was suspected because she also developed appetite loss for two weeks, and we could find no other laboratory findings to explain her unsteady gait. Our diagnosis was supported by abnormal serum thiamine and disappearance of the gait disturbance after intravenous thiamine administration. Case 2. A 50-year-old woman with breast carcinoma with bone metastasis developed an unsteady gait. WE was suspected because she also developed loss of appetite for two weeks, and no other laboratory findings could explain her unsteady gait. The diagnosis was supported by abnormal serum thiamine and disappearance of the gait disturbance after administration of intravenous thiamine.

Our report emphasizes the importance of being aware of WE, even when patients do not present with delirium. The presence of loss of appetite for more than two weeks may be the key to a diagnosis of WE.

This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change.

Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings.

Thematic analysis revealed five major themes—two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved.

Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.

Qualitative research is pivotal in gaining understanding of individuals’ experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children.

A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.

We retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, “living beyond pain,” the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.

This meta-summary presents the “state of the art” of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types—Manager, Carrier, Partner, Lone—each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.

This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.

Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.

This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

Our objective was to determine the knowledge, attitudes, and practices of physicians and nurses on Palliative Care (PC) in Lebanon, across specialties.

We performed a cross-sectional descriptive survey using a self-administered questionnaire; the total number of completed and returned questionnaires was 868, giving a 23% response rate, including 74.31% nurses (645) and 25.69% physicians (223).

Significant differences were found between medical and surgical nurses and physicians concerning their perceptions of patients' and families' outbursts, concerns, and questions. Knowledge scores were statistically associated with practice scores and degree. Practice scores were positively associated with continuing education in PC, exposure to terminally ill patients, and knowledge and attitude scores. Acute critical care and oncology were found to have lower practice scores than other specialties.

Formal education in palliative care and development of palliative care services are very much needed in Lebanon to provide holistic care to terminally ill patients.

The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.

Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.

Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.

Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.

There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.

A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.

In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.

This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.

The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program.

Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program.

The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program.

To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.