The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature.

A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms [“palliative care” OR “terminal care” OR “end of life care”] AND [“experience” OR “perspective” OR “qualitative” OR “interview”] AND [“patients” OR “clients” OR “service-user”]. Meta-synthesis was conducted on the data within the found papers.

A line-of-argument synthesis of 15 studies yielded four overarching themes: talking—facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions.

Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs.

Even though terminal cancer patients receive help from a hospice palliative care team, they have to suffer the pressure of death with deteriorating conditions. This study aims to evaluate the effect of art therapy for these terminal cancer patients.

The patients involved were terminal cancer patients who were under the care of team members, which included physicians, nurses, social workers, clergy, art therapists, and volunteers in a hospice palliative care unit in Taiwan. The art therapy in our study took the form of visual fine art appreciation and hands-on painting. The effects of the art therapy were evaluated according to patients' feelings, cognitions, and behaviors.

There were 177 patients (105 males and 72 females; mean age: 65.4 ±15.8 years) in the study. Each patient received a mean of 2.9 ± 2.0 sessions of the art therapy and produced a mean of 1.8 ± 2.6 pieces of art. During the therapy, most patients described their feelings well, and created art works attentively. Patients expressed these feelings through image appreciation and hands-on painting, among which the landscape was the most common scene in their art. After the therapy, the mean score of patients' artistic expressions (one point to each category: perception of beauty, art appreciation, creativity, hands-on artwork, and the engagement of creating artwork regularly) was 4.0 ± 0.7, significantly higher than the score before therapy (2.2 ± 1.4, p < 0.05). During the therapy, 70% of patients felt much or very much relaxed in their emotional state and 53.1% of patients felt much or very much better physically.

Terminal cancer patients in a hospice palliative care unit in Taiwan may benefit from art therapy through visual art appreciation and hands-on creative artwork.

The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI95%).

Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.

Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

Clinical observations indicate that patients with advanced cancer and depression report higher symptom burden than nondepressed patients. This is rarely examined empirically. Study aim was to investigate the association between self-reported depression disorder (DD) and symptoms in patients with advanced cancer controlled for prognostic factors.

The sample included 935 patients, mean age 62, 52% males, from an international multicentre observational study (European Palliative Care Research Collaborative – Computerised Symptom Assessment and Classification of Pain, Depression and Physical Function). DD was assessed by the Patient Health Questionnaire-9 and scored with Diagnostic and Statistical Manual of Mental Disorder-5 algorithm for major depressive disorder, excluding somatic symptoms. Symptom burden was assessed by summing scores on somatic Edmonton Symptom Assessment Scale (ESAS) symptoms, excluding depression, anxiety, and well-being. Item-by-item scores and symptom burden of those with and without DD were compared using nonparametric Mann-Whitney U tests. The relative importance of sociodemographic, medical, and prognostic factors and DD in predicting symptom burden was assessed by hierarchical, multiple regression analyses.

Patients with DD reported significantly higher scores on ESAS items and a twofold higher symptom burden compared with those without. Factors associated with higher symptom burden were as follows. Diagnosis: lung (β = 0.15, p < 0.001) or breast cancer (β = 0.08, p < 0.05); poorer prognosis: high C-reactive protein (β = 0.08, p < 0.05), lower Karnofsky Performance Status (β = −0.14, p < 0.001), and greater weight loss (β = −0.15, p < 0.001); taking opioids (β = 0.11, p < 0.01); and having DD (β = 0.23, p < 0.001). The full model explained 18% of the variance in symptom burden. DD explained 4.4% over and above that explained by all the other variables.

Depression in patients with advanced cancer is associated with higher symptom burden. These results encourage improved routines for identifying and treating those suffering from depression.

In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS.

A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations.

The existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items.

The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.

Due to the multiple physical, psychological, existential, and social symptoms involved, patients with advanced cancer often have a reduced quality of life (QoL), which requires specialized palliative care (SPC) interventions. The primary objective of the present systematic review was to review the existing literature about SPC and its effect on QoL, on physical and psychological symptoms, and on survival in adult patients with advanced cancer.

We utilized a search strategy based on the PICO (problem/population, intervention, comparison, and outcome) framework and employed terminology related to cancer, QoL, symptoms, mood, and palliative care. The search was performed in Embase, PubMed, and the Cochrane Central Register of Controlled Trials. Selected studies were analyzed and categorized according to methods, results, quality of evidence, and strength of recommendation.

Six randomized controlled trials (RCTs) were selected for analysis (out of a total of 1,115 studies). Two other studies were found by hand search, one of which was only published in conference abstract form. The RCTs differed in terms of aims, interventions, control groups, and outcomes; however, the primary aim of all of them was to investigate the effect of SPC on patient QoL. Five studies found improved QoL in the intervention group. Physical symptom intensity decreased in two studies, and three studies found improved mood in the intervention group. However, physical and psychological symptoms were secondary outcomes in these studies. Survival was improved in two studies. All the studies offered generalizability, but the level of evidence validity varied among them.

Due to several methodological limitations, the evidence offered in these studies ranged from low to high. The evidence in this field of study in general is still nascent, but there is growing support for the utilization of SPC to improve the quality of life of adult patients with advanced cancer. The evidence that SPC reduces physical and psychological symptoms is moderate, while the evidence that it prolongs survival is low.

This study compared the prevalence of anxiety and depression as measured on the Hospital Anxiety and Depression Scale (HADS) in palliative care patients being treated at home with those being treated as inpatients.

The participants were palliative care patients being treated at home (n = 46) and palliative care inpatients (n = 46). Subjects were assessed for functionality on the Karnofsky Performance Status Scale (KPS) and anxiety and depression were measured on the HADS.

The results showed that ~20% of all patients were depressed and anxious as measured on the HADS, regardless of the cutoff criteria. There was no significant difference in depression and anxiety between the two groups when socioeconomic status and functionality were controlled for. Functionality, as measured on the KPS, was uniquely a predictor of depression, and younger patients were shown to have greater anxiety.

The results suggest that home-based palliative care patients and palliative care inpatients should receive equal psychological support, and that clinicians need to be aware of the psychological vulnerability of younger and less-functional patients. The prevalence of depression and anxiety indicates that all palliative care patients should be screened for psychological distress, to identify those who need further assessment and treatment.

Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility.

The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions.

Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members.

Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC.

Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4–125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.

There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

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.

Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives.

Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship.

The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex.

The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

Increasingly, family or friends are providing care to those with cancer. However, the majority of those assuming the caring role have no prior knowledge related to the provision of care. The present study aimed to explore the experiences of informal carers with respect to their role, thus determining ways that services may support transition to this role.

In order to obtain an in-depth view of such experience, a qualitative meta-synthesis was employed to review the findings of 17 studies.

Out of this synthesis, three main concepts were developed: (1) identity and adopting the caring role, (2) the perception of care tasks, and (3) relationship dynamic changes as a result of caring.

The implications for professional practice are discussed.

Approximately 75% of prescription opioid abusers obtain the drug from an acquaintance, which may be a consequence of improper opioid storage, use, disposal, and lack of patient education. We aimed to determine the opioid storage, use, and disposal patterns in patients presenting to the emergency department (ED) of a comprehensive cancer center.

We surveyed 113 patients receiving opioids for at least 2 months upon presenting to the ED and collected information regarding opioid use, storage, and disposal. Unsafe storage was defined as storing opioids in plain sight, and unsafe use was defined as sharing or losing opioids.

The median age was 53 years, 55% were female, 64% were white, and 86% had advanced cancer. Of those surveyed, 36% stored opioids in plain sight, 53% kept them hidden but unlocked, and only 15% locked their opioids. However, 73% agreed that they would use a lockbox if given one. Patients who reported that others had asked them for their pain medications (p = 0.004) and those who would use a lockbox if given one (p = 0.019) were more likely to keep them locked. Some 13 patients (12%) used opioids unsafely by either sharing (5%) or losing (8%) them. Patients who reported being prescribed more pain pills than required (p = 0.032) were more likely to practice unsafe use. Most (78%) were unaware of proper opioid disposal methods, 6% believed they were prescribed more medication than required, and 67% had unused opioids at home. Only 13% previously received education about safe disposal of opioids. Overall, 77% (87) of patients reported unsafe storage, unsafe use, or possessed unused opioids at home.

Many cancer patients presenting to the ED improperly and unsafely store, use, or dispose of opioids, thus highlighting a need to investigate the impact of patient education on such practices.

The combination of a difficult early diagnosis, few treatment options, and high mortality rate could make the experience of pancreatic cancer different from the experience of other cancers, both for patients and families. To design effective interventions for families with a diagnosis of pancreatic cancer, there is need for a model of family members' adjustment to cancer that is specific to these unique aspects of pancreatic cancer.

Trained clinical interviewers and a genetic counselor conducted phone interviews with 22 first-degree relatives—parents, siblings, and offspring—from a pool of participating family members. The interview transcripts were analyzed using qualitative coding methods.

Participants expressed both similar and different themes compared with other literature on adjustment to cancer. Relatives struggled through both the initial diagnosis and its aftermath, seeking to balance their own strong feelings with the needs of the ailing family member. Support systems were identified as very important, regardless of the source of the support, and those without them reported more intense difficulties. Many family members felt that everything was happening too fast to slow down and process what was going on.

Pancreatic cancer families may be unable to cope by taking one day at a time and must find other ways of dealing with stress. Also, the compressed timeline between diagnosis and death may heighten certain coping behaviors, such as the reevaluation of one's priorities.

Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.

Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).

More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”

One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.