Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period.

The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant.

No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions.

According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer.

A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses.

Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20–79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden.

Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III–IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population.

A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory–Human Services Survey (MBI–HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL–90–R Symptoms Inventory.

There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI–HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15–30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it.

A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.

Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.

This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.

Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.

A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

The prevalence of depression as well as adjustment and anxiety disorders is high in advanced cancer patients, and research exploring intraindividual factors leading to high psychological distress is underrepresented. Cancer patients' feelings about security and trust in their healthcare providers have a significant influence on how they deal with their disease. The perception of social support is affected by patients' attachment styles and influences their reactions to feelings of dependency and loss of control. We therefore aimed to explore attachment and its association with psychological distress in patients with advanced cancer.

We obtained data from the baseline measurements of a randomized controlled trial in advanced cancer patients. Patients were sampled from the university medical centers of Hamburg and Leipzig, Germany. The main outcome measures included the Patient Health Questionnaire, the Death and Dying Distress Scale, the Memorial Symptom Assessment Scale, and the Experience in Close Relationships Scale for assessing attachment insecurity.

A total of 162 patients were included. We found that 64% of patients were insecurely attached (fearful-avoidant 31%, dismissing 17%, and preoccupied 16%). A dismissing attachment style was associated with more physical symptoms but did not predict psychological distress. A fearful-avoidant attachment style significantly predicted higher death anxiety and depression, whereas preoccupied attachment predicted higher death anxiety only. Overall, insecure attachment contributed to the prediction of depression (10%) and death anxiety (14%).

The concept of attachment plays a relevant role in advanced cancer patients' mental health. Healthcare providers can benefit from knowledge of advanced cancer patients' attachment styles and how they relate to specific mental distress. Developing a better understanding of patients' reactions to feelings of dependency and distressing emotions can help us to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.

Our aim was to identify the themes that arise when applying adapted meaning-centered group psychotherapy (MCGP) in Spanish-speaking advanced cancer patients.

A mixed qualitative–quantitative analysis was performed on the transcripts of interviews with 22 advanced cancer patients who had been assigned to three MCGP subgroups.

We found six new emergent themes in addition to the originally constructed themes of MCGP. Threat and uncertainty were the two most frequent emergent issues for our Spanish patients.

The implementation of MCGP in Spanish patients validated the themes proposed by Breitbart and colleagues' foundational work on MCGP and also suggested new issues relevant to patient well-being (classified as “emergent themes”). Taking our findings into account, we propose that these new themes be considered in the Spanish adaptation of MCGP as well as in future adaptations of this form of psychotherapy in treating Latin American patients.

Sleep can affect quality of life (QoL) during cancer survivorship, and symptoms related to poor sleep can be exacerbated. We examined the prevalence, severity, and nature of subjective sleep complaints in women surviving stage I–III breast cancer who were 1–10 years posttreatment. We also examined the demographic, medical, physical, and psychosocial correlates of poor sleep in these women in order to identify the subgroups that may be most in need of intervention.

A total of 200 patients at a comprehensive cancer center who were 1–10 years posttreatment for primary stage I–III breast cancer with no evidence of disease at the time of enrollment completed a battery of questionnaires on demographics, sleep, physical symptoms, mood, cancer-specific fears, and QoL.

The women had a mean age of 57 years (SD = 10.0), with a mean of 63.3 months (SD = 28.8) of post-cancer treatment. Some 38% of these patients were identified as having poor-quality sleep. Women with poor sleep took longer to fall asleep, had more awakenings, and acquired 2 hours less sleep per night than those with good sleep. They also had a lower QoL, greater severity of pain, more concerns about health and recurrence, and increased vasomotor symptoms (p < 0.05). Daytime sleepiness and depression were found to be not significantly correlated with sleep quality.

Many breast cancer survivors had severe subjective insomnia, and several breast cancer survivor subgroups were identified as having members who might be most in need of sleep-improvement interventions. Addressing physical symptoms (e.g., vasomotor symptoms and pain) and providing education about the behavioral, social, environmental, and medical factors that affect sleep could result in substantial improvement in the life course of breast cancer survivors.

This cross-sectional survey examined changes in perceived relationships and sexual activity in a sample of thyroid cancer patients and their partners, taking into account sociodemographic and disease-related variables, as well as such outcome measures as anxiety, depression, fatigue, and quality of life (QoL).

A total of 38 patients with thyroid cancer who were being treated at the department of nuclear medicine in Zürich or Lucerne over the preceding seven years, as well as their partners, completed questionnaires about the quality of their relationships (RQ), about perceptions of changes in their relationships, and about their frequency of sexual activity. They also filled out prevalidated questionnaires related to anxiety, depression, fatigue, and QoL.

Some 17 patients (44.7%) and 16 partners (42.1 %) reported that the cancer diagnosis had changed their relationships. Of these, 10 (26.3%) patients and 9 (23.7%) partners reported positive changes only, while 7 patients (18.4%) and 7 partners (18.4%) reported mixed or negative changes. A perceived mixed/negative relationship change was associated with increased depression and lower RQ in patients and partners, as well as with increased anxiety in patients. While the frequency of sexual activity only changed in roughly half of patients and partners (16 patients [42.1%] and 20 partners [52.6%]), increased sexual activity was associated with lower physical QoL scores and a higher depression score than in counterparts who reported no change.

Compared to other cancer sites, in our sample thyroid cancer had a relatively small impact on patient–partner relationships and levels of intimacy. We found that screening patients and their partners with a simple question—“Did the diagnosis of cancer change your relationship?”—can lead to early detection of couples who are potentially at risk for perceived negative relationship changes and can facilitate timely psychosocial referral for couple's therapy.

The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.

A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.

Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.

Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.

Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation.

We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation.

This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.