Antiretroviral therapy (ART) affords longevity to patients infected with the human immune deficiency virus (HIV). Since little is known about the health-related quality of life (HRQoL) of persons who have been on ART for at least five years, the present study investigated the HRQoL of these patients in Botswana.

Medical records, structured interviews, and the World Health Organization Quality of Life–BREF (WHOQoL–HIV–BREF) instrument were employed to obtain information from 456 respondents.

Univariate and multivariate regression analyses showed that respondents' highest scores were in the “physical” domain (mean = 15.8, SD = 3.5), while the lowest scores were in the “environment” domain (mean = 12.9, SD = 2.5). Thus, the physical domain had the greatest impact on patients' overall HRQoL. Self-education about HIV-related issues was significantly correlated with all domains of HRQoL scores: physical (ρ = –2.32, CI95% = –3.02, –1.61); psychological (ρ = –2.26, CI95% = –2.87, –1.65); independence (ρ = –1.81, CI95% = –2.54, –1.06); social relationships (ρ = –1.40, CI95% = –2.13, –0.67); environment (ρ = –1.58, CI95% = –2.13, –1.04); and spirituality (ρ = –1.70, CI95% = –82.27, –1.13).

HRQoL assessments can identify and address patients' needs, and it is important that guidelines be developed that will yield improved care to ART patients in Botswana.

Increasing awareness of well-being aspects of physical touch has spurred the appreciation for soft tissue massage (STM) as part of palliative care. Educational programs are available but with no specific focus on utilization for this kind of care. The aim was to study the feasibility of a 1-day course in STM in clarifying nursing staff's experiences and opinions, but also to shed light on their motivation and ability to employ STM in the care of dying cancer patients.

In all, 135 nursing staff participated. The course consisted of theory and hands-on training (hand-foot-, back massage). Focus-groups with 30/135 randomly chosen participants were conducted 4 weeks after the intervention. This study engaged a qualitative approach using content analysis.

The overall opinion of the 1-day course was positive. The majority experienced the contents of the course to be adequate and sufficient for clinical care. They emphasized the pedagogical expertise as valuable for the learning process. The majority of nurses shared the opinion that their extended knowledge clarified their attitudes on STM as a complement in palliative care. Still, a few found it to be too basic and/or intimate. Three categories emerged during the analysis: experiences of and attitudes toward the education, experiences of implementing the skills in every-day care situations, and attitudes to the physical body in nursing care.

The approach to learning and the pedagogical skills of the teacher proved to be of importance for how new knowledge was perceived among nurses. The findings may encourage hospital organizations to introduce short courses in STM as an alternative to more extensive education.

The purpose of this study was to determine the relationships among advance directive status, principal diagnoses, and the discharge outcomes in community-dwelling, critically ill older adults.

Using administrative and clinical data (n = 1673), multinomial logit regressions were used to examine the relationships among advance directive status, principal diagnoses, and discharge outcomes (in-hospital deaths, hospice discharges, and transition to institutions).

In the overall sample, the adjusted probability of in-hospital deaths with advance directives (12%) was lower than that without advance directives (17%; odds ratio [OR] = 0.56; p = 0.007) and the adjusted probability of hospice discharges with advance directives (11%) was higher than that without advance directives (7%; OR = 1.96; p = 0.03). Subgroup analysis showed that the magnitude of the abovementioned changes was aggregated when their principal diagnoses were a group of diseases with more difficult prognostication (circulatory and respiratory diseases) and more potential for reversibility (infectious diseases). By contrast, the magnitude of the abovementioned findings was diminished with other principal diagnoses. On the other hand, the presence of advance directives did not make a contribution to transition from communities to institutions.

Significantly fewer in-hospital deaths in addition to higher hospice discharges were observed with any advance directives in community-dwelling, critically ill older adults. The magnitude of these findings was aggregated when their principal diagnoses were a group of diseases with more difficult prognostication (circulatory and respiratory diseases) and more potential for reversibility (infectious diseases). By contrast, the magnitude of these findings was diminished with other principal diagnoses.

The aim of our study was to investigate the utility of bereavement life review (BLR) to elevate spiritual well-being and alleviate depression among Hawaiian-American caregivers, and to identify changes that occur when caring for their loved ones up to the time of death.

Bereavement life review therapy was provided for 20 bereaved Hawaiian Americans. In the first session, subjects reviewed memories of the deceased with a therapist, who recorded their narratives and collected them into a personal history book. During the second session, subjects discussed the contents of this book. Caregivers completed the Functional Assessment Chronic Illness Therapy–Spiritual (FACIT–Sp) questionnaire and the Beck Depression Inventory, Second Edition (BDI-II) pre- and post-intervention. Subjects also described changes in their views that occurred during the caring process in response to questions.

FACIT–Sp scores significantly increased from 34.1 ± 9.63 to 36.3 ± 10.6 (t = –2.6, p < 0.05, and BDI scores significantly decreased from 11.7 ± 7.7 to 8.8 ± 7.0 (t = 2.27, p < 0.05). Five categories were chosen from the narratives on changes that had occurred during caregiving and due to the deceased death: “Learning from practical caring experience,” “Positive understanding of patients,” “Recognition of appreciation,” “Self-change or growth,” and “Obtaining a philosophy.”

These findings show the applicability of bereavement life review therapy for Hawaiian families, including efficacy for spiritual well-being and depression. The comments of the caregivers also indicate the potential of the therapy for identifying the positive aspects of caring for terminally ill patients.

To describe the perceived qualities of successful palliative care (PC) providers in the emergency department (ED), barriers and facilitators to ED–PC, and clinicians’ perspectives on the future of ED–PC.

This qualitative study using semi-structured interviews was conducted in June–August 2020. Interviews were analyzed via a two-phase Rapid Analysis. The study's primary outcomes (innovations in ED–PC during COVID) are published elsewhere. In this secondary analysis, we examine interviewee responses to broader questions about ED–PC currently and in the future.

PC providers perceived as successful in their work in the ED were described as autonomous, competent, flexible, fast, and fluent in ED language and culture. Barriers to ED–PC integration included the ED environment, lack of access to PC providers at all times, the ED perception of PC, and the lack of a supporting financial model. Facilitators to ED–PC integration included proactive identification of patients who would benefit from PC, ED-focused PC education and tools, PC presence in the ED, and data supporting ED–PC. Increased primary PC education for ED staff, increased automation, and innovative ED–PC models were seen as areas for future growth.

Our findings provide useful information for PC programs considering expanding their ED presence, particularly as this is the first study to our knowledge that examines traits of successful PC providers in the ED environment. Our findings also suggest that, despite growth in the arena of ED–PC, barriers and facilitators remain similar to those identified previously. Future research is needed to evaluate the impact that ED–PC initiatives may have on patient and system outcomes, to identify a financial model to maintain ED–PC integration, and to examine whether perceptions of successful providers align with objective measures of the same.

Both trait and contextual self-concealment, as well as shame- and guilt-proneness, have previously been found to be associated with psychological distress. However, findings regarding the associations between these variables among patients with cancer and among the spouses of patients with cancer are limited. The aim of the current study was therefore to investigate the relationship between shame-proneness and psychological distress (anxiety and depression) by examining the mediating role of both trait and contextual self-concealment among patients with cancer and among the spouses of patients with cancer.

The current study was part of a large-scale cross-sectional study on self-concealment among patients with cancer and spouses of patients with cancer. It was based on two independent subsamples: patients with cancer and spouses of patients with cancer, who were not dyads. A total of 80 patients with cancer and 80 spouses of (other) patients with cancer completed questionnaires assessing shame- and guilt-proneness, trait and contextual self-concealment, anxiety, and depression.

Results indicate that spouses reported both greater shame-proneness and anxiety than did patients (main effect of role). Female participants reported greater shame-proneness, higher levels of contextual self-concealment, and greater depression and anxiety than did male participants (main effect of gender). No group differences (role/gender) were found for guilt-proneness and trait self-concealment. Trait and contextual self-concealment partially mediated the relationship between shame-proneness and distress, pointing out the need to further examine additional mediators.

Findings suggest that contextual self-concealment and shame-proneness are important variables to consider when assessing distress in the setting of psycho-oncology. Study results may have significant clinical implications regarding the need to identify patients and spouses who are more prone to shame and self-concealment behavior in order to better tailor interventions for them.

The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.

A retrospective study was conducted using electronic records (June 2015 to December 2016).

A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.

Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores ≥4. The three most frequent problems ≥4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).

The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.

Our objective was to review how meditation could comfort the terminally ill.

Our methodology was a literature search, which included books, journals, papers in collections, and online databases. The main search engines employed were Google Scholar and the Durham University Library. The main databases consulted were the Christian Meditation Centre, Project Meditation, and Stress-Related Facts and Well-Being at Monash. We were specifically interested in data acquired from clinical and nonclinical trials. The arguments needed to be based on qualitative and quantitative scientific data. Papers were published between 1985 and 2014. We then subdivided the review into three subcategories: physical, emotional, and self-awareness. When reviewing each category, we put our results into tabular form. In each table, we noted the percentage of terminally ill patients (TIPs) and non-terminally ill patients (NTIPs), and whether meditation had comforted them.

Our review demonstrated that there are many areas that have yet to be researched. First, very little work has been done on how meditation affects the physical health of TIPs, including such variables as blood pressure, chronic pain, and sleeping patterns. However, no research has been done on heart disease, hypertension, depression, among others. Second, virtually no research has been conducted on how meditation affects the mental health of TIPs. Notably neglected areas include anxiety, compliance, depression, and stress. Third, no research has been done on whether meditation increases self-awareness in TIPs. In each of these cases, most NTIPs reacted positively; however, no research has been done on why TIPs reacted differently.

Our results demonstrate the need for further research on how meditation affects terminally ill patients. In turn, this would enrich the debate on whether meditation should be prescribed for the dying.

The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs’ disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.

Thirteen YAs (ages 23–38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.

Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs’ participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.

Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.

To investigate the spiritual care needs and associated influencing factors among elderly inpatients with stroke, and to examine the correlations among spiritual care needs, spiritual well-being, self-perceived burden, self-transcendence, and social support.

A cross-sectional quantitative design was implemented, and the STROBE Checklist was used as the foundation of the study. A convenience sample of 458 elderly inpatients with stroke was selected from three hospitals in China. The sociodemographic characteristics questionnaire, the Nurse Spiritual Therapeutics Scale, the Functional Assessment of Chronic Illness Therapy—Spiritual Well-being, the Self-Perceived Burden Scale, the Chinese Self-Transcendence Scale, and the Perceived Social Support Scale were used. Descriptive statistics, correlation, Student's t-test, ANOVA, non-parametric, and multiple linear regression analyses were used to analyze the data.

The total score of spiritual care needs was 29.82 ± 7.65. Spiritual care needs were positively correlated with spiritual well-being (r = 0.709, p < 0.01), self-transcendence (r = 0.710, p < 0.01), and social support (r = 0.691, p < 0.01), whereas being negatively correlated with self-perceived burden (r = −0.587, p < 0.01). Religious beliefs, educational level, residence place, disease course, spiritual well-being, self-perceived burden, self-transcendence, and social support were found to be the main influencing factors.

The spiritual care needs were prevalent and moderate. It is suggested that nurses should enhance spiritual care knowledge and competence, take targeted spiritual care measures according to inpatients’ individual personality traits or characteristics and differences of patients, reduce their self-perceived burden and improve their spiritual well-being, self-transcendence and social support in multiple ways and levels, so as to meet their spiritual care needs to the greatest extent and enhance their spiritual comfort.

Oral mucositis (OM) is a frequently encountered problem as a complication of cancer treatment. We investigated whether daily washings with colchicine solution improved mucositis in patients with hematological malignancies undergoing chemotherapy.

This study was a one-arm, nonrandomized clinical trial that used a historical control group. Patients were included in the study from the first day of mucositis and followed up until discharge. Patients received 2 mg colchicine mouthwashes daily for 5 days or saline solution. OM was assessed once daily until symptom resolution, using the WHO grading scale of 0–4 and a visual analogue scale. We determined that at least 40 patients in the colchicine group would be needed to detect a 20% difference in the duration of OM between Groups A and B, with a 95% confidence level and a power of 80%.

82 patients were included in the final analysis, 40 in the colchicine group and 42 in the control group. Median duration of OM was significantly different among groups; 9days (range 1–17days) for the control group versus 6days (range 3–13days) for those exposed to colchicine mouthwash (p = .028). The median days of regression of mucosal lesions were significantly different (p = .047) among the control group (7 days [range 3–20]) compared to the colchicine group (4 days [range 2–14]).

Although our findings suggest that colchicine mouthwash is helpful in reducing the severity and duration of chemotherapy-induced OM, randomized trials are needed to confirm these results.

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.

The need for palliative care (PC) will continue to increase in Canada with population aging. Many older adults prefer to “age in place” and receive care in their own homes. Currently, there is a lack of standardized quality indicators (QIs) for PC delivered in the community in Canada.

A one-day workshop collected expert opinions on what should be measured to capture quality PC. Three brainstorming sessions were focused on addressing the following questions: (1) what is important to measure to support quality PC, regardless of setting? (2) Of the identified measures, are any of special importance to care provided in the home? (3) What are the challenges, barriers, and opportunities for creating these measures? The National Consensus Project (NCP) for Quality Palliative Care framework was used as a guide to group together important comments into key themes.

The experts identified four themes that are important for measuring quality, regardless of care setting, including access to care in the community by a multidisciplinary team, care for the individual with PC needs, support for the informal caregiver (e.g., family, friends), and symptom management for individuals with PC needs. Two additional themes were of special importance to measuring quality PC in the home, including spiritual care for individuals with PC needs and home as the preferred place of death. The challenges, barriers, and potential opportunities to these quality issues were also discussed.

PC experts, through this collaborative process, made a substantial contribution to the creation of a standardized set of QIs for community-based PC. Having a standardized set of QIs will enable health care professionals and decision makers to target areas for improvement, implement interventions to improve the quality of care, and ultimately, optimize the health and well-being of individuals with a serious illness.

Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.

Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.

The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.

It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

Body image adjustment is a crucial issue for patients with facial cancer, but body image–specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention’s feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL).

Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann–Whitney U tests as appropriate.

Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (−1 vs. −8.3, p = 0.033) compared to control group.

Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

As referrals to specialist palliative care (PC) grow in volume and diversity, an evidence-based triage method is needed to enable services to manage waiting lists in a transparent, efficient, and equitable manner. Discrete choice experiments (DCEs) have not to date been used among PC clinicians, but may serve as a rigorous and efficient method to explore and inform the complex decision-making involved in PC triage. This article presents the protocol for a novel application of an international DCE as part of a mixed-method research program, ultimately aiming to develop a clinical decision-making tool for PC triage.

Five stages of protocol development were undertaken: (1) identification of attributes of interest; (2) creation and (3) execution of a pilot DCE; and (4) refinement and (5) planned execution of the final DCE.

Six attributes of interest to PC triage were identified and included in a DCE that was piloted with 10 palliative care practitioners. The pilot was found to be feasible, with an acceptable cognitive burden, but refinements were made, including the creation of an additional attribute to allow independent analysis of concepts involved. Strategies for recruitment, data collection, analysis, and modeling were confirmed for the final planned DCE.

This DCE protocol serves as an example of how the sophisticated DCE methodology can be applied to health services research in PC. Discussion of key elements that improved the utility, integrity, and feasibility of the DCE provide valuable insights.