The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL).

The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables. The data were analyzed using Pearson's correlations, t-tests, ANOVAs, and linear regressions.

Significant correlations were observed between CB and SS availability (r = −0.499, p < 0.001), SS satisfaction (r = −0.543, p < 0.001), the age of the child with cancer (r = −0.22, p = 0.01), and duration of treatment (r = 0.336, p < 0.001). Married mothers experienced less CB than those that were widowed or divorced. Within the regression equation, SS satisfaction, SS availability, marital status, and duration of treatment were the predictors of CB.

Based on the results of the current study, mothers who have less SS, especially those who are single mothers, with younger children, and who have taken care of their child for an extended duration should be given special attention. Furthermore, it appears that there are distinct cultural variations amongst Iranian mothers which suggest that culture may impact upon SS availability. Results also suggest a need for interventions that enhance nurses' ability to provide support to caregivers and the broader family unit as a whole. Nurses in cancer care need to have psychological competencies to help family members of cancer patients especially mothers and more so those that are single mothers. As integral members of the patient care experience, nurses may be uniquely positioned to provide this needed psychosocial support.

To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.

A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.

The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.

The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

The aim of this study was to describe the last year of life of a sample of the oldest old, focusing on care trajectories, health, social networks, and function in daily life activities.

Data originated from the NONA study, a longitudinal study of 193 individuals among the oldest old living in a Swedish municipality. During this longitudinal study, 109 participants died. Approximately one month after their death, a relative was asked to participate in a telephone interview concerning their relative's last year of life. One hundred two relatives agreed to participate.

Most of the elderly in this sample of the oldest old (74.5%) died at an institution and the relatives were mostly satisfied with the end-of-life care. The oldest old relatives estimated that the health steadily declined during the last year of life, and that there was a decline in performing of daily life activities. They also estimated that those dying in institutions had fewer social contacts than those dying in a hospital or at home.

Care at end of life for the oldest old is challenged by problems with progressive declines in ability to perform activities of daily living and health. The findings also highlight the need to support social networks at eldercare institutions.

Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme—professional support—most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

This systematic review aimed to examine end-of-life (EoL) care research undertaken in an Eastern cultural context—Hong Kong—with the hope of better informing EoL care professionals and policy makers and providing lessons for other countries or areas that share similar EoL care challenges.

Eight databases were searched from their respective inception through to August of 2014. All of the resulting studies conducted in Hong Kong and relevant to EoL care or palliative care were examined. The included studies were assessed with respect to study design, care settings, participants, research themes, and major findings.

Some 107 publications published between 1991 and 2014 were identified. These studies were undertaken at a range of places by different professionals. Of the total, 44 were led by physicians, 36 by nurses, 17 by social workers, and 10 by other professionals. Participants included both inpatients and outpatients with different illnesses, nursing home residents, older community-dwelling adults, deceased individuals, care staff, and informal caregivers. A total of 13 research themes were identified: (1) attitudes to or perceptions of death and dying; (2) utilization of healthcare services, (3) physical symptoms or medical problems; (4) death anxiety or mental health issues; (5) quality of life; (6) advance directives or advance care planning; (7) supportive care needs, (8) decision making; (9) spirituality; (10) cost-effectiveness or utility studies; (11) care professionals' education and training; (12) informal caregivers' perceptions and experience; and (13) scale development or validation.

While there has been a wide and diverse range of research activities in Hong Kong, EoL care services at primary care settings should be strengthened. Some priority areas for further research are recommended.

Studies on decisional capacity have primarily focused on cognitive disorders, whereas noncognitive disorders remain understudied. The purpose of our study was to assess decisional capacity across a wide spectrum of medical and psychiatric disorders.

More than 2,500 consecutive consults were screened for decisional capacity, and 336 consults were reviewed at Bellevue Hospital Center in New York. Sociodemographic and medical variables, medical and psychiatric diagnoses, as well as decisional capacity assessments were recorded and analyzed.

Consults for decisional capacity were most commonly called for in male patients with cognitive and substance abuse disorders. Less commonly, consults were called for patients with mood or psychotic disorders. Overall, about two thirds of patients (64.7%) were deemed not to have decisional capacity. Among medical diagnoses, neurological disorders contributed to decisional incapacity, and among the psychiatric diagnoses, cognitive disorders were most frequently documented in cases lacking decisional capacity (54.1%) and interfered more commonly with decisional capacity than substance abuse or psychotic disorders (37.2 and 25%). In contrast, patients with mood disorders usually retained their decisional capacity (32%). Generally, the primary treatment team's assessment was accurate and was confirmed by the psychiatric service.

Although decisional capacity assessments were most commonly requested for patients with substance abuse and cognitive disorders, the latter generally affected the ability to make healthcare decisions the most. Further, cognitive disorders were much more likely to impair the ability to make appropriate healthcare decisions than substance abuse or psychotic disorders.

Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).

Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.

Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.

Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

In the United Kingdom, a Four-Tier Model of Psychological Support has been recommended for all patients with cancer and their families. This model suggests that staff at Tier 2, such as nurses, doctors, and allied health professionals, should be proficient in screening for psychological distress and intervening with techniques such as psycho-education and problem solving. Research has suggested that although communication skills training is essential for staff working in cancer services, it does not necessarily improve the detection of specific psychological disorder or staff confidence in intervening with highly distressed patients. The objective was therefore to design a training program that addressed this deficit and was easily accessible to hospital staff.

Method:. A training package was developed to train staff in the recommended skills. A literature review of teaching modalities and the effectiveness of different formats was conducted. A four-session program was developed, to be administered by staff at Tiers 3 and 4 of the model, such as clinical psychologists and counsellors.

Over 3 years, 255 sets of data were collected from staff who attended the course. Precourse, postcourse, and 6-month follow-up data were collected through the use of confidence questionnaires, developed from the literature. The data show a significant improvement in staff confidence across all domains measured, including confidence in the detection and management of psychological distress (p =.0001).

Although the results have limitations and the data are subjective, we can conclude that this course significantly improves staff confidence in dealing with psychological distress and that this increased confidence is maintained over a 6-month follow-up period.

The present study is the result of theory-driven research investigating the role of the search for and presence of meaning in enhancing both mental adjustment and eudaimonic well-being in cancer patients.

A cross-sectional study involved 266 cancer patients currently in the treatment and management phase of their illness. Data were collected by a written questionnaire. The search for meaning was assessed with the Seeking of Noetic Goals Test, and the presence of meaning was assessed using the Purpose in Life Test. Mental adjustment to a cancer diagnosis was assessed by two subscales of the Italian version of the Mini-Mental Adjustment to Cancer Scale, and eudaimonic well-being was assessed with the Psychological Well-Being Scale. Correlation and mediation analyses based on five thousand bootstrapping samples were performed.

The mediation analyses showed that the presence of meaning totally or partially mediated the effect of the search for meaning on both mental adjustment and eudaimonic well-being. Further correlation analyses showed a high negative correlation between eudaimonic well-being and hopelessness.

Our results appear relevant from both the theoretical and clinical points of view. They support a deeper understanding of the combined contribution of the search for and presence of meaning in promoting well-being in cancer patients. Simultaneously, they are consistent with suggestions from recent studies on the clinical psychology of posttraumatic growth and emphasize the relevance of eudaimonic well-being as a protective factor for hopelessness.

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

Similar to delirium, its subsyndromal form has been recognized as the cause of diverse adverse outcomes. Nonetheless, the nature of this subsyndromal delirium remains vastly understudied. Therefore, in the following, we evaluate the phenomenological characteristics of this syndrome versus no and full-syndromal delirium.

In this prospective cohort study, we evaluated the Delirium Rating Scale–Revised, 1998 (DRS–R–98) versus the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Text Revision (DSM–IV–TR) diagnostic criteria and examined the diagnosis of delirium with respect to phenomenological distinctions in the intensive care setting.

Out of 289 patients, 36 with subsyndromal delirium versus 86 with full-syndromal and 167 without delirium were identified. Agreement with respect to the DSM–IV–TR diagnosis of delirium was perfect. The most common subtype in those with subsyndromal delirium was hypoactive, in contrast to mixed subtype in those with full-syndromal delirium versus no motor alterations in those without delirium. By presence and severity of delirium symptoms, subsyndromal delirium was intermediate. The ability of the DRS–R–98 items to discriminate between either form of delirium was substantial. Between subsyndromal and no delirium, the cognitive domain and sleep–wake cycle were more impaired and allowed a distinction with no delirium. Further, between full- and subsyndromal delirium, the prevalence and severity of individual DRS–R–98 items were greater. Although the differences between these two forms of delirium was substantial, the items were not very specific, indicating that the phenomenology of subsyndromal delirium is closer to full-syndromal delirium.

Phenomenologically, subsyndromal delirium was found to be distinct from and intermediate between no delirium and full-syndromal delirium. Moreover, the greater proximity to full-syndromal delirium indicated that subsyndromal delirium represents an identifiable subform of full-syndromal delirium.

We developed a specific cognitive–existential intervention to improve existential distress in nonmetastatic cancer patients. The present study reports the feasibility of implementing and evaluating this intervention, which involved 12 weekly sessions in both individual and group formats, and explores the efficacy of the intervention on existential and global quality of life (QoL) measures.

Some 33 nonmetastatic cancer patients were randomized between the group intervention, the individual intervention, and the usual condition of care. Evaluation of the intervention on the existential and global QoL of patients was performed using the existential well-being subscale and the global scale of the McGill Quality of Life (MQoL) Questionnaire.

All participants agreed that their participation in the program helped them deal with their illness and their personal life. Some 88.9% of participants agreed that this program should be proposed for all cancer patients, and 94.5% agreed that this intervention helped them to reflect on the meaning of their life. At post-intervention, both existential and psychological QoL improved in the group intervention versus usual care (p = 0.086 and 0.077, respectively). At the three-month follow-up, global and psychological QoL improved in the individual intervention versus usual care (p = 0.056 and 0.047, respectively).

This pilot study confirms the relevance of the intervention and the feasibility of the recruitment and randomization processes. The data strongly suggest a potential efficacy of the intervention for existential and global quality of life, which will have to be confirmed in a larger study.

Few reports of Wernicke encephalopathy in oncological settings have been published. Some cases of Wernicke encephalopathy are related to appetite loss; however, the degree to which loss of appetite leads to thiamine deficiency is not known.

A 63-year-old female with advanced cancer of the external genitalia was referred for psychiatric consultation because of disorientation, insomnia, and bizarre behaviors. Her symptoms fulfilled the diagnostic criteria for delirium. Routine laboratory examinations did not reveal the cause of the delirium. Thiamine deficiency was suspected because appetite loss had continued for 19 days since she had been admitted to hospital.

Intravenous administration of thiamine resulted in recovery from the delirium within three days. Serum thiamine level was found to be 16 ng/ml (normal range: 24–66 ng/ml). The clinical findings, the low level of thiamine in the serum, and the effective alleviation of delirious symptoms after thiamine administration fulfilled Francis's criteria for delirium induced by thiamine deficiency.

Clinicians must be aware of the possibility of Wernicke encephalopathy in cancer patients, especially in those with loss of appetite for longer than 18 days. The degree of appetite loss in such patients might serve as a reference. Early detection and intervention may alleviate the symptoms of delirium and prevent irreversible brain damage.

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis.

Thirteen interviews were analyzed with qualitative content analysis.

The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death.

Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

Spiritual care has formed an integral part of palliative care since its inception. People with advanced illnesses, however, frequently report that their spiritual needs are not attended to by their medical care team. The present study examines and describes the impact of a spiritual care training program on practice and cultural change in our Canadian hospice.

A qualitative case study approach was adopted to gather feedback from hospice staff and volunteers using purposive sampling. In-depth interviews were conducted, transcribed, and analyzed using thematic (semantic and latent) analysis.

Our data suggest that the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in our organization. Using a program not specifically tailored to our local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests that the program had a positive impact and meaningfully benefited our hospice. “What will happen next?” was the question most frequently voiced by interviewees.

Although the program may not have been a perfect fit for our organization, its use instigated a process of cultural change that unfolds today. The present study suggests that a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions.

Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers.

A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention.

Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention.

This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.

The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.

Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.

Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

Delirium is a frequent and severe complication of serious pediatric illness. Development of a nonpharmacologic approach to prevent pediatric delirium may improve short- and long-term outcomes in children and their families. In this brief report, we describe the development of a quality improvement project designed to methodically promote the family member's engagement, comforting, and orienting activities with their critically ill child to decrease delirium rates.

We created a developmentally specific Delirium Prevention Toolkit for families. In a feasibility pilot, March through June 2016, we offered the kit to 15 patients and their families. On discharge, families were asked to describe use of the toolkit and whether or not it was helpful for them.

Twelve of 15 patients and families used various elements of the toolkit, particularly the headphones, music, and games; no one regularly used the blank journal. All reported that it was easy and helpful to have as support for their stay in the pediatric intensive care unit.

This pilot demonstrated practicality of a nonpharmacologic delirium prevention toolkit in the pediatric intensive care unit, and satisfaction from patients and families.

The diagnosis of terminal cancer begins one of the most complex and challenging individual experiences of human life that requires multiple coping responses, one of those being hope. There are few studies that provide descriptions of hope over time for adults, ages 20–59, with advanced stage cancer. The purpose of this study was to describe hope as defined and experienced by young and middle age adults with advanced stage cancer.

This descriptive, longitudinal qualitative research study interviewed 12 hopeful adults with advanced stage cancer once a month for 3 months.

By definition, this population exhibited high levels of hope at study entry. Hope scores did not change overtime. Four qualities associated with high levels of hope included: reliance on strong spiritual beliefs, maintenance of positive attitudes, accommodation of cancer symptoms, and the presence of supportive resource people. The emphasis or importance of each quality and specific hope related goals were determined and defined individually. Hope goals varied in degree of expectancy and concreteness and require reassessment as conditions change.

By identifying an individual's hope goals, palliative care clinicians can then plan and implement interventions to move toward that hope goal.