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Sleep is one of the important measurements of the quality of life for children especially suffering from a chronic illness such as cancer. Our aim was to determine the changes in sleep quality and to investigate the effect of virtual reality-based exercise (VRBE) approaches on sleep in patients with acute lymphoblastic leukemia (ALL) off treatment.
Method
The participants (ALL and healthy siblings) were evaluated for sleep quality with polysomnography and “Children's Sleep Habit Questionnaire” before and after 12 weeks. The study randomized into two groups: an exercise group who received VRBE in two days in a week, 45 min of each session for 12 weeks and an control group who were managed with supportive measures. The VRBE comprised of aerobic exercise in four different games by Nintendo Wii Fit Plus®.
Results
This randomized controlled trial was carried out on 38 participants. Before intervention, ALL patients (n = 24) and healthy siblings (n = 14) had similar sleep quality in terms of polysomnography and Children's Sleep Habit Questionnaire findings. After intervention, total time asleep (p = 0.023), respiratory disturbance index of hypopnea (p = 0.005), apnea/hypopnea index (p = 0.008), and number of apnea (p = 0.028) statistically significant improved.
Significance of results
Patients with ALL off treatment had similar values of sleep quality with healthy siblings. Novel types of exercises like VRBE have positive effects on sleep disorders in children with ALL and also healthy siblings. Future studies are needed comparing the different types of interventions.
To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs).
Methods
A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP.
Results
At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC.
Significance of results
Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.
Virtual reality (VR) has the potential to improve pain and pain-related symptoms. We examined the feasibility, acceptability, safety, and impact of a 30-min virtual underwater/sea environment (VR Blue) for reducing pain and pain-related symptoms in advanced colorectal cancer patients. A qualitative exit interview was conducted to understand preferences, thoughts, and feelings about the VR session.
Method
Participants (N = 20) had stage IV colorectal cancer and moderate-to-severe pain. Participants completed a 30-min VR Blue session that visually and aurally immersed them in virtual ocean scenarios. Feasibility was assessed by accrual (N = 20), protocol adherence (≥80% completing VR Blue), and completed data (≥80% assessment completion). Acceptability was determined by patients reporting ≥80% intervention satisfaction. Safety was determined by ≥80% of patients completing the session without self-reported side effects. Measures of pain, tension, relaxation, stress, anxiety, and mood were collected before, during, and after the VR Blue session. A semi-structured qualitative interview was conducted after VR Blue to assess participants’ VR experiences.
Results
All participants (100%) completed the VR Blue session. There was 100% data collection at the pre- and post-assessments. Satisfaction with VR Blue was high M = 3.3 (SD = 0.4) (83%). No significant side effects were reported. Pain decreased by 59% (Pre-M = 3 [1]; Post-M = 1 [1]). Tension decreased by 74% (Pre-M = 30 [24]; Post-M = 8 [13]). Relaxation improved by 38% (Pre-M = 62 [21]); Post-M = 86 [17]). Stress decreased by 68% (Pre-M = 24 [24]; Post-M = 8 [14]). Anxiety decreased by 65% (Pre-M = 20 [23]; Post-M = 7 [13]). Mood improved by 70% (Pre-M = 13 [16]; Post-M = 4 [11]). Qualitative data suggested a positive response to the VR Blue protocol.
Significance of results
This work supports the feasibility, acceptability, and safety of VR Blue for advanced colorectal cancer patients. Participants showed significant pre-post improvement in pain and pain-related symptoms hinting to the potential feasibility of VR interventions in this population. Larger, randomized trials with a control condition are needed to examine the efficacy of VR-based interventions for patients with advanced colorectal cancer and pain.
This follow-up study on perceived self-image and psychophysical distress/psychic symptoms was based on a ranomized contolled study of art therapy on women with breast cancer.
Method
The aim was to examine the long-term effects of time-limited art therapy using the instruments of Structural Analysis of Social Behavior (SASB) and Symptom Check List-90 (SCL-90).
Results
Three attachment clusters of the SASB showed significant changes post therapy: Autonomous self (cluster 1), Accepting self (cluster 2), and Loving self (cluster 3). Clusters 2 and 3 continued to change in favor of the intervention group at the 5-year follow-up. There were no significant differences in the SCL-90 results between the intervention group and the control group in the follow-up study.
Significance of results
The art therapy intervention was both therapeutic and psycho-educative. The conclusion of this study is that approaching emotions through time-limited art therapy seems to have a long-lasting effect on the attachment behavioral system shown in the SASB model post intervention, and this effect remained 5 years later.
To describe the 5-year practice on palliative sedation in a specialized palliative care unit in a deprived region in Brazil, and to compare survival of patients with advanced cancer who were and were not sedated during their end-of-life care.
Method
Retrospective cohort study in a tertiary teaching hospital. We described the practice of palliative sedation and compared the survival time between patients who were and were not sedated in their last days of life.
Results
We included 906 patients who were admitted to the palliative care unit during the study period, of whom, 92 (10.2%) received palliative sedation. Patients who were sedated were younger, presented with higher rates of delirium, and reported more pain, suffering, and dyspnea than those who were not sedated. Median hospital survival of patients who received palliative sedation was 9.30 (CI 95%, 7.51–11.81) days and of patients who were not sedated was 8.2 (CI 95%, 7.3–9.0) days (P = 0.31). Adjusted for age and sex, palliative sedation was not significantly associated with hospital survival (hazard ratio = 0.93; CI 95%, 0.74–1.15).
Significance of results
Palliative sedation can be accomplished even in a deprived area. Delirium, dyspnea, and pain were more common in patients who were sedated. Median survival was not reduced in patients who were sedated.
There is a growing interest in the emotional state of cancer patients. The main objective of this pilot study is to assess the feasibility, acceptability, and preliminary efficacy of Meaning-Centered Psychotherapy and Essential Care (MCP-EC) in patients with advanced cancer compared with usual psychological support. We define “Essential Care” as the promotion of patient care and self-care through the recall of good care experiences and discussion of the concepts: responsibility, self-compassion, kindness, and attitude.
Method
Pilot, single-center, and prospective study of 30 patients with advanced cancer and emotional distress. Our adaptation consisted in three session Meaning-Centered Psychotherapy-Palliative Care, plus a fourth session named “Essential Care”. The study was carried out in two phases. First, 20 patients were randomized to one of the two arms: individual MCP-EC (experimental, n = 10) or usual psychological supportive (control, n = 10). In a second phase, 10 patients were assigned consecutively to Group MCP-EC (n = 10). All patients were evaluated at baseline (pre-) and post-intervention with questionnaires for sociodemographic data and clinical scales.
Results
Nineteen patients completed the 4 sessions of MCP-EC, 9 individual format and 10 group format. Usual supportive intervention was delivered to 10 control patients. Total 28 patients completed pre- and post-treatment evaluations. There were no pre- vs. post-differences in the evaluations of the control group. In the experimental group, significant pre- vs. post-differences were found in EQ-5D-3L, HADS, FACIT, DM, HAI, SCS-SF, and TD questionnaires. These results indicated that MCP-EC reduced anxiety and depression symptoms, hopelessness, demoralization, as well as increased spiritual well-being and sense of meaning. Participants were satisfied and found the MCP-EC intervention positively.
Conclusions
This pilot study suggests that the MCP-EC has feasibility, acceptability, and preliminary efficacy reducing the emotional distress in advanced cancer patients. Larger studies are warranted to clarify the strengths and limitations of this psychotherapy.
End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision.
Method
A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age- and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons.
Results
Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population.
Significance of results
In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients’ data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.
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.
Method
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.
Results
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.
Significance of results
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.
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers’ preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers.
Method
This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data.
Results
Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health.
Significance of results
A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.
The purpose of this feasibility study was to examine the impacts of a peer discussion group intervention called “the pancreatobiliary cancer salon” on psychological distress among patients with pancreatobiliary cancer and their caregivers.
Methods
We recruited patients with pancreatic or biliary tract cancer and their caregivers. We conducted a within-group pre–post comparison study. Participants were grouped by the type of cancer and treatment. Each group consisted of four to five patients or caregivers. Hospital staff members facilitated group discussions where participants freely talked for 1 h. We evaluated participants’ psychological condition using the Profile of Mood States (POMS) and their impressions of the pancreatobiliary cancer salon.
Results
We analyzed data from 42 patients and 27 caregivers who joined the salon for the first time. Thirty-five patients (83.3%) had pancreatic cancer. Thirty-one patients (71.4%) had unresectable pancreatobiliary cancer and 14 patients (33.3%) were being treated with second-line or third-line chemotherapy at the time of the survey. Twenty-two patients (52.4%) participated in the salon within 6 months after diagnosis. Most participating caregivers were the patient's spouse/partner (51.9%) or child (34.6%). Both patients and caregivers experienced high levels of satisfaction with the pancreatobiliary cancer salon. Both patients and caregivers had significantly lower psychological distress as assessed by POMS after the salon.
Significance of results
A peer discussion group intervention might be well-received and has potential to benefit for patients with pancreatobiliary cancer and their caregivers.
Hispanic/Latinos living in rural areas have limited healthcare resources, including palliative and hospice care. Moreover, little is known about advance care planning (ACP) among Hispanic/Latino cancer patients in rural areas. This study explores facilitators and barriers for ACP. It elicits suggestions to promote ACP among rural Hispanic/Latino cancer patients in a US/Mexico border region.
Methods
Hispanic/Latino cancer patients (n = 30) were recruited from a nonprofit cancer organization. Data were collected via in-person interviews. Interviews were transcribed and translated from Spanish to English. Data were uploaded into NVivo 12 and analyzed using thematic analysis.
Results
A common theme for facilitators and barriers for ACP was safeguarding family. Additional facilitators included (1) Desire for honoring end-of-life (EoL) care wishes and (2) experience with EoL care decision making. Additional barriers include (1) Family's reluctance to participate in EoL communication and (2) Patient–clinicians’ lack of EoL communication. Practice suggestions include (1) Death education and support for family, (2) ACP education, and (3) Dialogue vs. documentation.
Significance of results
ACP functions not only as a decisional tool; its utility reflects complex dynamics in personal, social, and cultural domains. ACP approaches with this underserved population must consider family relationships as well as cultural implications, including language barriers.
To understand (1) the association of Major Depressive Disorder (MDD) and do-not-resuscitate (DNR) status among hospitalized patients and (2) the association of MDD and hospitalization outcomes among DNR patients.
Methods
This was a cross-sectional analysis of United States Healthcare Cost and Utilization Project, Nationwide Inpatient Sample data from 2009 to 2013 for patients >18 years. To address the first objective, we used multivariable logistic regression among all hospitalized patients to compute the adjusted odds ratio (aOR) of having DNR status if patients have active MDD of varying severities after controlling for age, sex, race, suicidal ideation, and Elixhauser Comorbidity Index. To address the second objective, we used multivariable regression among patients with DNR status to compute aOR of having hospitalization outcomes such as increased length of stay, higher total charges, leaving against medical advice, and mortality if patients have MDD.
Results
Among all hospitalizations, 2.3% had DNR status. There was an inverse association between severity of MDD and having DNR status. Relative to those without MDD, patients with moderate recurrent MDD episode (aOR 0.74 (95% confidence interval (CI): 0.65–0.85) and severe recurrent MDD episode (aOR of 0.42 (95% CI: 0.37–0.48)) were significantly less likely to have DNR status. Among DNR patients, those with all severities of MDD except mild single episode MDD were >40% less likely to die during hospitalization. Among DNR patients, patients with MDD had 0.7 day longer length of stay, and >$4,500 higher total charges.
Significance of results
Patients are less likely to have DNR status if they have active MDD. Among patients with DNR status, those with MDD are less likely to die during hospitalization than those without MDD. With current practice, depression is not associated with increased likelihood of death due to foregoing resuscitation prematurely, though the exact mechanisms of these findings need further investigation.
The purpose of this study was to investigate the validity and reliability of the Japanese version of the Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire (PEACE-J) and to evaluate the association between the PEACE subscales and Japanese patient characteristics.
Methods
A cross-sectional web-based survey was conducted among 412 patients with cancer. This survey assessed medical and demographic factors, such as the PEACE, the Coping Inventory for Stressful Situations (CISS), and the Functional Assessment of Chronic Illness Therapy — Spiritual well-being (FACIT-Sp). The forward–backward translation method was used to develop the PEACE-J. The validity of PEACE-J was evaluated by exploratory and confirmatory factor analysis, and correlation analysis between each subscale of PEACE and FACIT-Sp and CISS. The Cronbach's α and the item-total correlation of each subscale of the PEACE questionnaire were calculated to assess internal consistency reliability.
Results
The factor analysis yielded two subscales corresponding to the original version: Cronbach's α coefficients were 0.84 and 0.86 for the Peaceful Acceptance of Illness subscale and the Struggle with Illness subscale, respectively. The PEACE subscales and the FACIT-Sp subscales and the CISS subscales were moderately associated with each other, including the Peaceful Acceptance to each subscale of FACIT (r = 0.22–0.55, p < 0.01); and the Peaceful Acceptance and the Struggle with Illness to CISS emotion-oriented coping (r = −0.36 and r = 0.45, p < 0.01, respectively). Married patients showed higher levels of peaceful acceptance than unmarried patients (p < 0.001). Poorer performance status, chemotherapy use, and recurrence or metastasis were significantly associated with higher levels of struggle with illness (p < 0.001).
Significance of results
This study indicated that the PEACE-J is a valid and reliable measure of the patient's sense of acceptance, calmness or equanimity, and peace, as well as their sense of struggle or desperation concerning their illness.
The Functional Assessment of Cancer Therapy–Bone Marrow Transplant Version 4 (FACT-BMT) is a widely used instrument to assess quality of life in individuals treated with bone marrow transplantation (BMT). Our aim was to determine the reliability and validity of the Turkish version of the FACT-BMT in patients undergoing BMT.
Method
Patients between the age of 20 and 65 years and who had undergone BMT at least 3 months before the study were included. Validity was determined using exploratory and confirmatory factor analysis. To determine convergent validity, the European Cancer Research and Treatment Organization Quality of Life Questionnaire–Cancer30 (EORTC QLQ-C30), the Brief Fatigue Inventory (BFI), and the Eastern Cooperative Oncology Group (ECOG) performance score were used. Cronbach's alpha, intra-class correlation coefficient (ICC), and item-total correlation (ITC) values were calculated to assess the reliability of the FACT-BMT.
Results
Totally, 114 patients (F/M: 47/67) treated with BMT (mean age: 49.50 ± 12.50 years) were included. Confirmatory and exploratory factor analysis revealed that the FACT-BMT and the Bone Marrow Transplantation Subscale (BMTS) had sufficient fit. The FACT-BMT was moderately to strongly correlated with the EORTC QLQ-C30, the BFI, and the ECOG performance score (p < 0.001). Cronbach's alpha and ICC values of the FACT-BMT were acceptable (0.925 and 0.956, respectively). The ITC values of each item of the FACT-BMT were also acceptable (ranged from 0.296 to 0.737). Patients undergoing autologous BMT had a significantly higher BMTS score than those undergoing allogeneic BMT (p < 0.05).
Significance of results
The Turkish version of the FACT-BMT is valid, reliable, and sensitive to changes in quality of life in patients undergoing BMT.
Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians.
Methods
Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed.
Results
The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment.
Significance of results
Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.
To review current evidence of nurses’ involvement in end-of-life discussions with incurable cancer patients and their family caregivers.
Design
We conducted a systematic integrative review in accordance with PRISMA guidelines: PROSPERO, registration number: CRD42020186204.
Data sources
CINAHL, Medline, PsycInfo, Embase. We searched for primary research between 2010 and 2020.
Results
Of 3,271 references, we found 15 eligible articles: qualitative (n = 12) and quantitative (n = 3). The studies focused on oncology nurses' perspective of involvement in end-of-life discussions. The data analysis resulted in four overall themes: (1) Nursing roles; the advocating, supporting, and reframing roles, and an undefined task, for example in medical consultations, (2) Trust building, (3) Nurse competences, and (4) Medical issues.
Significance of results
The nurses have several roles in end-of-life discussions, but insufficient competencies to be involved in that kind of discussions, for example to involve and communicate with families. The findings implicate an educational need among the nurses. However, it also points toward an organizational change in the outpatient clinics, for example that end-of-life discussions follow a more structured approach, are offered in a scheduled manner, and that nurses invite the family caregivers to attend.
There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.
Methods
A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.
Results
In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.
Significance of results
This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.
Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies.
Methods
This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool.
Results
The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses.
Significance of results
More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients’ health literacy levels to address their advance care planning needs.
It is well known that the burden on the families of cancer patient extends across many aspects, but there have been no reports of family members developing delirium due to the burden of caring for a cancer patient.
Methods
We reported a caregiver who developed Wernicke encephalopathy (WE) while caring for a family member with advanced cancer.
Results
The subject was a 71-year-old woman who had been caring for her husband, diagnosed with gastric cancer and liver metastases, for 5 months. She visited the “caregivers’ clinic” after referral by an oncologist who was worried about a deterioration in her mental condition that had appeared several weeks previously. The woman had a history of diabetes mellitus. Some giddiness was observed and, based on her inability to answer questions, her level of consciousness was checked and some disorientation was observed. She was diagnosed with delirium. A blood sample was collected to investigate the cause of the delirium, but the test data showed no hypoglycemia. Her appetite had declined since her husband was diagnosed with cancer. Thiamine deficiency was suspected as thiamine stores in the body are depleted within about 18 days and her loss of appetite had continued for 5 months. On intravenous injection of 100 mg of thiamine, her consciousness level was returned to normal in 1 h. A diagnosis of WE was supported by the patient's abnormally low serum thiamine level.
Significance of the results
The family members of cancer patients may develop a loss of appetite due to the burden of caring, resulting in WE. When providing care for signs of distress in family members, it is necessary to pay attention not only to the psychological aspects but also to their level of consciousness and physical aspects, particularly the possibility of serious illness resulting from reduced nutritional status.