The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.

This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.

Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.

This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015–2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients’ records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

To deliver mindfulness-based cognitive therapy (MBCT) efficiently, the present study aimed (1) to identify predictors and moderators of patients who benefit from MBCT for psychological distress and (2) to explore the initial treatment reaction to identify the optimal number of sessions that produce a significant clinical effect.

This is the secondary analysis of a randomized controlled trial of MBCT for breast cancer patients (N = 74). We classified the participants into remitters vs. non-remitters, and responder vs. non-responders, according to the total score of the Hospital Anxiety and Depression Scale at the end of the intervention. We conducted multivariate analyses to explore for predictors of response and remission. We adopted generalized estimating equations to explore the optimal number of sessions.

Sociodemographic and clinical backgrounds did not have significant influence on the treatment outcomes of the MBCT. Better program adherence, which was represented as the participants’ better attendance to the MBCT program, was a significant predictor of both remission and response [odds ratio (OR) = 1.90, 95% confidence interval (CI) 1.25–2.89, p = 0.003, and OR = 1.72, 95% CI 1.12–2.65, p = 0.013, respectively]. It was not until seventh session that the remission rate exceeded 50% and the response rate showed significance.

Sociodemographic and clinical characteristics did not significantly influence the treatment outcomes, while homework minutes and class attendance had significant effects on treatment outcomes. This implies that MBCT is recommended to any cancer patient, if he/she is motivated to the program, regardless of their sociodemographic and clinical characteristics. Patients are encouraged to attend a standard MBCT program (eight sessions) and do the assigned homework as intensely as possible. Further studies with larger sample and objective measurements are desired.

Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression.

A total of 31 relatives were included. Data collection was performed at five time points: 1–3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life — Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R).

The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives’ iQoL correlated with emotional well-being and the patient's physical function at different time points.

Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives’ iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives’ own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.

To use data from a national quality register to investigate if there are differences relating to migrant background in the quality of end-of-life care of patients dying in Sweden.

A retrospective, comparative register-based study. In total, 81,418 deceased patients, over 18 years of age, registered in the Swedish Register of Palliative Care during 2017 and 2018, of expected death were included in the study. Of these, 72,012 were Swedish-born and 9,395 were foreign-born. Descriptive and analytical statistical methods were used.

No general pattern of differences in quality regarding end-of-life care was found between Swedish- and foreign-born patients. There were several significant differences in various quality indicators but not in a specific direction. Sometimes, the quality indicators showed an advantage for Swedish-born patients but just as often, they were also favorable for foreign-born patients. Swedish-born patients had greater access to specialized palliative care than foreign-born patients. Foreign-born patients were more often cared for in general home care setting, despite a higher frequency of cancer diagnosis.

Foreign-born patients were less likely to be cared for in specialized palliative care units and had poorer access to palliative care teams than Swedish-born patients, despite having a higher proportion of cancer diagnoses. However, no general pattern was found indicating that foreign-born patients were disadvantaged in the quality indicators measured in the present study. Perhaps, this is an indication that the palliative care in Sweden is individualized; nonetheless, the quality of end-of-life care would be higher if dying patients, regardless of country of birth, have better access to specialized palliative care.

Preserving personal dignity is an important aim of palliative care. Little is known about how physicians perceive and preserve dignity of patients from non-western migration backgrounds. Insight in this is important given the increased demand for culturally sensitive palliative care.

To gain insight in how Dutch physicians perceive and preserve dignity in the last phase of life for patients from non-western migration backgrounds.

Qualitative thematic analysis of semi-structured interviews.

Fifteen physicians experienced in palliative care.

Physicians experienced dilemmas in preserving dignity of non-western patients in three situations: (a) relief of suffering in the terminal phase, (b) termination of interventions and treatment, and (c) disclosure of diagnosis. Physicians wanted to grant the needs of patients in the last phase of their lives, which was central to physicians’ view on dignity, but dilemmas arose when this conflicted with physicians’ other personal and professional values. To make the dilemmas manageable, physicians assessed whether needs of patients were authentic, but due to linguistic, cultural, and communication barriers, this was difficult with non-western patients. To find a way out of the dilemmas, physicians had three strategies: accept and go along with patient's wishes, convince or overrule the patient or family, or seek solutions that were acceptable for all.

Physicians encounter dilemmas providing palliative care for people from non-western backgrounds. Future physicians can be trained in connective strategies and seeking middle grounds to optimally preserve patients’ dignity while being in concordance with their personal and professional values.

This research aims to examine the effect of playing games with toys made of medical materials in children with cancer on pain that occurs during intravenous (IV) treatment.

The randomized controlled clinical trial was conducted between May 2016 and February 2018. The study sample comprised 110 children (experimental group 55; control group 55), determined using power analysis from the study population. The data were collected by the researcher, using face-to-face interview techniques, the Information Form, and Wong–Baker FACES Pain Rating Scale (WBS).

The pre- and post-test pain mean scores of patients in the experimental group were 2.27 ± 0.91 and 0.43 ± 0.66, respectively (p = 0.0001). The pre- and post-test pain mean scores of patients in the control group were 1.72 ± 0.82 and 3.34 ± 0.77, respectively (p = 0.0001).

The experience of playing with toys made from materials used for invasive procedures relieves pain the during IV treatment.

Traditionally, the psychological well-being of healthcare workers has been taken for granted — it has even been considered a part of the requirements that were demanded of them. When these professionals have experienced suffering and psychological depletion, they have been held accountable for this suffering, adopting an individualistic and reductionist viewpoint focused only on the professional. This approach has become obsolete due to its proven ineffectiveness, especially from an ethics of responsibility and organization viewpoint.

The psychological well-being of the healthcare worker (and its opposites: suffering, exhaustion, and disenchantment) is advantageous to the professional's commitment to the institution, to their work performance, and to their personal life.

The objective of this paper is to reflect on the psychological suffering of the palliative care professional.

We will reflect on the three levels of responsibility that influence such suffering (micro-meso-macro-ethical; worker-environment-institution).

We will propose a global strategy for the care of psychological well-being supported by scientific evidence and key references.

We conclude with some contributions on what we have learned and still have to learn on this topic.

Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members.

In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date.

Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment.

There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context.

As part of a secondary analysis, data derived from two qualitative primary studies on FCs’ burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement.

Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs’ experiences: “Connectedness,” “Religious Faith,” “Transcendence,” “Hope,” and a fifth overarching aspect which we named “Ongoing integration of spiritual experience.” Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs’ narratives.

In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs’ problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions.

Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC.

Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths.

Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

Delirium is a frequent complication in advanced cancer patients, among whom it is frequently underdiagnosed and inadequately treated. To date, evidence on risk factors and the prognostic impact of delirium on outcomes remains sparse in this patient population.

In this prospective observational cohort study at a single tertiary-care center, 1,350 cancer patients were enrolled. Simple and multiple logistic regression models were utilized to identify associations between predisposing and precipitating factors and delirium. Cox proportional-hazards models were used to estimate the effect of delirium on death rate.

In our patient cohort, the prevalence of delirium was 34.3%. Delirium was associated inter alia with prolonged hospitalization, a doubling of care requirements, increased healthcare costs, increased need for institutionalization (OR 3.22), and increased mortality (OR 8.78). Predisposing factors for delirium were impaired activity (OR 10.82), frailty (OR 4.75); hearing (OR 2.23) and visual impairment (OR 1.89), chronic pneumonitis (OR 2.62), hypertension (OR 1.46), and renal insufficiency (OR 1.82). Precipitating factors were acute renal failure (OR 7.50), pressure sores (OR 3.78), pain (OR 2.86), and cystitis (OR 1.32). On multivariate Cox regression, delirium increased the mortality risk sixfold (HR 5.66). Age ≥ 65 years and comorbidities further doubled the mortality risk of delirious patients (HR 1.77; HR 2.05).

Delirium is common in cancer patients and associated with increased morbidity and mortality. Systematically categorizing predisposing and precipitating factors might yield new strategies for preventing and managing delirium in cancer patients.

Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social–spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre–post comparison.

Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests.

Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333).

After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced.

The importance of supporting advance care planning (ACP) by healthcare professionals is recognized worldwide, and assessing the outcomes, such as people's understanding and readiness for ACP, using an appropriate instrument is essential. We, therefore, developed a Japanese version of the Advance Care Planning Engagement Survey (ACP Engagement Survey; 15 items, 9 items, and 4 items), an international scale for assessing the progress of the ACP, and examined its validity and reliability.

The ACP Engagement Survey was translated into Japanese, back-translated, and culturally adapted, and the final version was reviewed by the author of the original version. Data on basic demographic information and ACP-related experiences were simultaneously collected as external criteria in an online survey of older adults with chronic diseases. The Cronbach's alpha was calculated to assess its internal consistency, and a retest was performed three days later to calculate the intra-class correlation coefficients (ICCs).

A total of 200 respondents (mean age 70; 9.5% female) were included in the analysis. None of the items showed a ceiling effect, but several items did exhibit a floor effect. The factor structure was the same 2-factor structure as the original version, and both factors exhibited a high cumulative contribution rate. The Cronbach's alphas were 0.94 (15-item version), 0.91 (9-item version), and 0.95 (4-item version), and ICCs were of 0.88 (15-item version), 0.9 (9-item version), and 0.84 (4-item version).

The Japanese version of the ACP Engagement Survey was confirmed to have very good reliability regarding both internal consistency and test-retest reliability. Together with the result of the item analysis, we can conclude that the Japanese version of the ACP Engagement Survey is sufficiently reliable to be utilized in interventional studies, and it has acceptable content validity, construct validity, and criterion-related validity.

Psychosocial interventions in families of children with cancer are considered an effective way of empowering family members to tackle the complex hurdles they face. The ability of parents to develop adaptive coping strategies during the child's treatment is not only important to their own mental and physical health, but also to their child's well-being and long-term adjustment with the disease.

The aim of this review was to evaluate the existing literature for the period from 2009 to 2017 on psychosocial interventions targeting families of children with cancer. We searched the PubMed database using the following combination of keywords: “cancer AND children AND (intervention OR training) AND (mothers OR primary caregivers OR parents OR fathers OR siblings).”

After careful evaluation of 995 papers, 17 full-text papers were found to match our criteria (12 randomized controlled trials and 5 quasi-experimental studies). The quality of the studies was assessed using the Delphi score questionnaire, and the score of the reviewed studies ranged from 3 to 5. The findings suggest that most interventions reduced distress and improved coping strategies among participants. Interventions, mainly cognitive behavioral therapy and problem-solving skills training targeting maternal distress, were associated with improved adjustment outcomes in mothers of children with cancer.

Psychosocial interventions are helpful, and efforts should be made to promote them in a larger scale. Protocols should be implemented to ensure that all parents benefit. Computer-assisted methods may provide additional benefit by improving cancer-related knowledge and cancer-related communication.

Continuing to utilize healthcare as needed during an epidemic outbreak is significant, in general, and especially for cancer patients. Therefore, this study aimed to explore factors associated with health services utilization among breast cancer patients during the coronavirus disease (COVID-19) outbreak.

A cross-sectional online survey was conducted among 151 women with breast cancer. Participants completed measures of perceived health status, perceived susceptibility to COVID-19, anxiety, coping resources, health services utilization (contact with healthcare professionals and cancellation of an appointment to the oncology/hematology clinic), and socio-demographic questionnaires. A multiple hierarchical regression was calculated; contact with healthcare professionals was the dependent variable. In addition, a logistic regression was calculated; cancellation of an appointment to the oncology/hematology clinic because of the COVID-19 was the dependent variable.

Breast cancer patients’ contact with healthcare professionals was lower than their contact prior to the pandemic. A higher extent of contact with healthcare professionals was related to patients’ perception of health as bad/reasonable, lower perceived susceptibility, a lower sense of mastery, and higher social support. In addition, the odds of cancelling an appointment to the oncology/hematology clinic were higher in the presence of additional chronic illnesses and a higher sense of mastery.

The results could provide public health agencies with a more complete picture of the impact of the COVID-19 epidemic among breast cancer patients. This is significant because, in the event that COVID-19 re-emerges, the findings of the current study could help guide public health officials and possibly prevent the future avoidance of health services’ use among this high-risk population.

Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.

The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.

One emotional barrier, “negative emotional reactions” (13 items, Cronbach's α = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's α = 0.85), “belief in avoidance” (5 items, Cronbach's α = 0.86), and “outcome expectancy” (4 items, Cronbach's α = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.

Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.