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Male rectal and anal cancer patients demonstrate high rates of sexual dysfunction. This pilot randomized controlled trial tested a psychoeducational intervention designed to improve psychosexual adjustment.
Methods
Rectal or anal cancer patients were randomized to a Sexual Health Intervention for Men (intervention) or to a referral and information control (control). The intervention included control activities plus 4 sexual health intervention sessions every 4–6 weeks and 3 brief telephone calls timed between these sessions. Assessments were completed pre-intervention (baseline) and 3 months (follow-up 1) and 8 months (follow-up 2) post-intervention. Differences were assessed with statistical significance and Cohen’s d effect sizes (d = 0.2, small effect; d = 0.5, moderate effect; d = 0.8, large effect).
Results
Ninety subjects enrolled. Forty-three participants completed at least 1 follow-up assessment (intervention, n = 14; control n = 29). At follow-up 1, men in intervention, compared to control, improved on all domains of the International Index of Erectile Function (IIEF) (p < 0.001 to p < 0.05) and demonstrated large effects (d = 0.8 to d = 1.5). Similarly, at follow-up 2, changes in all domains of the IIEF except the orgasm domain were either statistically significant or marginally statistically significant (p = 0.01 to p = 0.08) and demonstrated moderate to large treatment effects for intervention versus control (d = 0.5 to d = 0.8). Men in the intervention, compared to control, demonstrated decreased sexual bother at follow-up 1 (p = 0.009, d = 1.1), while Self-Esteem and Relationship (SEAR) total scores and the SEAR sexual relationship subscale demonstrated moderate increases for intervention versus control (d = 0.4 to d = 0.6).
Significance of results
This study provides initial evidence for combining a psychoeducational intervention with medical interventions to address sexual dysfunction following rectal and anal cancer. Trials register number: NCT00712751 (date of registration: 7/10/2008).
Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools.
Methods
The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool.
Results
Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified “family relationships,” “global pain,” and “family roles and accomplishments” as being of most importance to patients.
Significance of results
The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient–caregiver and patient–HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.
Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables.
Methods
A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions.
Results
A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy.
Significance of results
This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.
Chaplains provide spiritual care in a variety of settings and are an important part of palliative and supportive care teams. This study aims to describe chaplain interactions from the perspective of the recipients of care.
Methods
The study draws on data from a nationally representative survey conducted by the Gallup Organization in March 2022.
Results
Two main groups of recipients were identified: primary recipients and visitors/caregivers. Current typologies of chaplain activities focus on primary recipients of care, but a similar proportion of chaplain interactions takes place with visitors/caregivers. Bivariate analysis was used to compare the experiences of the chaplains’ primary recipients of care to other recipients of care and the experiences of visitors/caregivers to other recipients of care. Primary recipients of care were significantly more likely to have religious interactions with the chaplain and to experience the interactions as valuable and helpful.
Significance of results
This study is the first to show the groups of people – primary recipients and visitors/caregivers – who receive care from chaplains. It demonstrates how care recipients experience care differently from chaplains based on their position, which has important implications for spiritual care practice.
Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP.
Methods
We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework.
Results
Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning.
Significance of results
Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants’ perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.
Parents of medically complex children juggle unique demands associated with caring for chronically ill children, many of which negatively impact their mental wellbeing. Despite this, parents of medically complex children often forgo mental health support due to concerns with costs, time, stigma, and accessibility. There is limited research on evidence-based interventions addressing such barriers for these caregivers. We piloted an adapted version of Mood Lifters, a peer-led wellness program, to equip parents of medically complex children with evidence-based strategies to manage their mental health while also reducing barriers to support. We hypothesized parents would find Mood Lifters to be feasible and acceptable. Further, parents would experience improvements in mental wellbeing upon program completion.
Methods
We conducted a single-arm prospective pilot study to assess Mood Lifters for parents of medically complex children. Participants included 51 parents in the U.S. recruited from a local pediatric hospital providing care for their children. Caregiver mental wellbeing was assessed through validated questionnaires pre-intervention (T1) and post-intervention (T2). Repeated-measures analysis of variance was conducted to evaluate change between T1 and T2.
Results
Analyses from T1 and T2 (n = 18) revealed improvements in parents’ depression (F(1,17) = 7.691, p = 0.013) and anxiety (F(1,17) = 6.431, p = 0.021) after program completion. Improvements in perceived stress and positive and negative emotion were significant at p < 0.0083.
Significance of results
Parents of medically complex children experienced improved mental health upon participating in Mood Lifters. Results offer preliminary support for the feasibility and acceptability of Mood Lifters as an evidence-based care option that may also alleviate common barriers to care.
This study aims to measure and explore the barriers to translating theoretical knowledge of palliative care into clinical practice.
Methods
A mixed-method study, combining a cross-sectional survey and key interviews was conducted. The quantitative data were obtained from 173 nurses and the key interviews were conducted with 42 health professionals drawn from multiple settings. For quantitative data analysis, Statistical Package for the Social Sciences software were conducted, and a thematic analysis supported with NVivo software were used for analyzing qualitative data.
Results
Of the 220 nurses invited, 173 completed the survey (79%). Most (78%) had a bachelor’s degree in nursing. Fewer than half, 69 (40%) scored 75% or more for the knowledge test; 173 (100%) scored 50% or greater for attitude; and only 32 (18.5%) scored 75% or greater for self-reported practice. While there was a small, positive correlation between palliative care attitudes and self-reported practice (r = 0.22, p = 0.003), the qualitative findings indicated that nurses had significant challenges in translating their theoretical knowledge into clinical practice. Limited clinical practice was linked to inadequate knowledge resulting from insufficient integration of palliative care content in undergraduate curricula and a lack of follow-up training. This was further exacerbated by shortages of medicine, staff, and financial resources and was linked to limited attention accorded to palliative care by the government.
Significance of results
While the results showed the majority held positive views toward palliative care, improving palliative care practices requires, and enhancing nurses’ knowledge of palliative care. This requires changing teaching methods and engaging policymakers.
End-of-life (EoL) processes are a complex socio-normative and ethical phenomenon. This study aimed to generate a database of public opinion in Israel concerning EoL processes and decisions and to identify differences in attitudes across subgroups in the population, particularly based on experience as a family caregiver of a dying patient.
Methods
This cross-sectional study was performed in late March 2022. The study utilized an online sample of 605 adults over the age of 50 including those who accompanied a loved one to their death in the last 3 years. Participants were requested to provide their opinions and attitudes on several aspects of EoL decisions, including truth-telling, medically assisted dying, EoL procedures, pre-death actions, and family caregivers’ engagement.
Results
While only 27% and ∼30% of participants support artificial respiration or feeding (respectively) of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. The data show an association between religiosity and agreement with life-extending procedures. For example, while 83% of seculars support medically assisted dying, only 59% and 26% of traditional and religious respondents support it. However, no statistically significant differences were observed in support of family involvement in EoL process in any sociodemographic variable.
Significance of results
The results of this study suggest that the Israeli public is relatively polarized on several issues about EoL processes, specifically patient autonomy and medically assisted dying. Yet, at the same time, there is a consensus among the Israeli public about certain EoL elements, particularly the importance of family caregivers in the EoL decision-making process.
Some cancer patients experience cancer-related cognitive change (CRCC). Cognitive rehabilitation interventions (CRIs) have recently been developed to help mitigate the impact of CRCC, which, untreated, can impact resumption of daily life post-cancer treatment. The experience of participants is important to understand but largely absent within research literature. This study aimed to explore how those with CRCC experience the phenomenon following completion of a CRI.
Methods
This study comprised a qualitative phenomenological approach. This involved conducting in-depth, semi-structured interviews with 6 self-referred participants from one CRI. Participants were invited to discuss their experience of CRCC and what the CRI therefore meant to them. Interviews were analyzed using interpretative phenomenological analysis.
Results
Analysis of the findings revealed 4 key themes. (1) “Experiencing and addressing isolation” comprises reflections on posttreatment perceived abandonment and consequent feelings of belonging through CRI participation. (2) “Identity” explores participants’ reflections around perceived loss-of-self and feelings of empowerment from the intervention. (3) “Cognitive and physical balance” comprises the planning and choices participants make, supported by both their own and CRI coping strategies as they seek acceptance of cognitive change. (4) “Course reflections” explore reflections on intervention structure, format, and delivery, focusing on 2 subthemes of accessibility, flexibility and inclusivity, and communication. All participants reflected positively on their experience.
Significance of results
Results support further dissemination among health professionals and implementation of this CRI to better support self-reported CRCC concerns within this population. Future qualitative research should explore the long-term impact of CRI interventions.
Physical activity (PA) interventions help people with advanced incurable diseases to manage symptoms and improve their quality of life. However, little is known about the extent to which PA is currently delivered in hospice care in England.
Objectives
To determine the extent of and intervention features of PA service provision in hospice care in England alongside barriers and facilitators to their delivery.
Methods
An embedded mixed-methods design using (1) a nationwide online survey of 70 adult hospices in England and (2) focus groups and individual interviews with health professionals from 18 hospices. Analysis of the data involved applying descriptive statistics to the numeric items and thematic analysis to the open-ended questions. Quantitative and qualitative data were collected and analyzed separately.
Results
The majority of responding hospices (n = 47/70, 67%) promoted PA in routine care. Sessions were most often delivered by a physiotherapist (n = 40/47, 85%) using a personalized approach (n = 41/47, 87%) and included resistance/thera bands, Tai Chi/Chi Qong, circuit exercises, and yoga. The following qualitative findings were revealed: (1) variation among hospices in their capacity to deliver PA, (2) a desire to embed a hospice culture of PA, and (3) a need for an organizational commitment to PA service provision.
Significance of results
While many hospices in England deliver PA, there is considerable variation in its delivery across sites. Funding and policy action may be needed to support hospices to initiate or scale up services and address inequity in access to high-quality interventions.
Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden.
Methods
In this cross-sectional study, advanced cancer patient–caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients’ symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables.
Results
Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43–6.60]; p = 0.004), anxiety (3.02 [1.19–7.71]; p = 0.021), caring for the patient alone (2.69 [1.26–5.77]; p = 0.011), caregiver perception of patient’s fatigue (1.26 [1.01–1.58]; p = 0.04), and patient’s religion (3.90 [1.21–12.61]; p = 0.02) were independently associated with caregiver burden.
Significance of results
FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient–caregiver dyads to decrease caregiving burden among Latinos.
The Cut down, Annoyed, Guilty, and Eye opener- Adapted to Include Drugs (CAGE-AID) questionnaire (CA) is a validated screening tool used to assess risk for nonmedical opioid use (NMOU) in patients receiving opioids for cancer pain. Data on consistencies and variations in responses to the CA between different clinical settings are lacking. We evaluated the frequency and consistency in scoring of the CA among patients seen between the first inpatient consult (T1) and the first outpatient follow-up (T2) visits.
Methods
A retrospective chart review of 333 consecutive patients seen at both T1 and T2 within 3 months between August 2016 and March 2017 was reviewed.
Results
Median age was 58 years (range, 18–87 years); 53% were female. CA was completed for 88% of patients at T1 and 94% at T2. Of these, 10% and 13% were CAGE-AID positive, respectively. CA score changed from negative to positive in 4% and from positive to negative in 1% of patients between T1 and T2. Kappa coefficient for agreement of CA between T1 and T2 was 0.74 (95% CI: 0.62–0.86, p = 0.02).
Significant of results
Completion rate and consistency of patient responses to the CA were high irrespective of clinical setting. Of these patients, 10% and 13% were CA positive which is suggestive of high risk for NMOU. Further studies are needed to evaluate ways to ensure more consistency in the completion of the CA and enhance its utilization in routine clinical practice.
Undergraduate nursing education prepares student for entry into the profession. Palliative care is an essential component of nursing education; however, a focus on the management of symptom burden fails to prepare the undergraduate in communication skills required for palliative or end-of-life care (EoLC). Simulation to teach acute care is well researched; however, limited studies explore simulation for palliative care or EoLC. Fewer studies combine communication with palliative care simulation.
Objectives
The overarching aim is to explore the influence of a palliative care communication simulation on undergraduate nursing students.
Methods
Participants were students recruited from two campuses at a major Australian university in 2021. Students attended a compulsory simulation for all nursing or nursing and midwifery students. Pre- and post-simulation questionnaires collected qualitative and quantitative responses from participants. This paper reports that the quantitative data captured included demographic information, and the Frommelt Attitude Toward Care of the Dying (FATCOD-B) tool, to assess the attitudes. The qualitative component of the research will be reported as a separate paper.
Results
A statistically significant increase in FATCOD-B scores was observed between pre- and post-simulation questionnaires, as well as a statistically significant difference related to the gender of participants. Age and previous experience with death also impacted FATCOD-B results.
Significance of results
The increase in FATCOD-B scores demonstrate that the positive impact of simulation suggests the importance of educational interventions such as the one conducted in this study. Education to improve the attitude toward caring for the dying and communication skills for difficult conversations are relevant and valuable. Further research is indicated.
Psychological distress is common among palliative care patients. Despite this, little is known about the availability of psychological services to support palliative care patients within Australia. This study aimed to determine the level of psychological support services available within Australian Palliative Care Services. The study was based on a similar study in Australia by Crawford in 1999, allowing differences over time to be examined.
Methods
A 12-item online survey was distributed to adult Palliative Care Services throughout Australia from November 2021 to January 2022. Quantitative and qualitative analysis of responses was conducted, with comparisons made with the 1999 study using a 2-proportions z-test.
Results
Social workers were the most available professionals delivering psychological care (prevalence of 94.1%), followed by spiritual care workers (62.5%), creative therapists (43.8%), counselors (36.4%), psychiatrists (31.3%), complementary therapists (28.1%), and psychologists (25.0%). Nearly 60% of services had no access to a psychiatrist or a psychologist. The proportion of Palliative Care Services that had access to a psychiatrist, psychologist, or counselor was significantly less in 2021/22 compared to 1999, with differences of 29.4% (p = 0.002), 23.4% (p = 0.015), and 26.1% (p = 0.006), respectively.
Significance of results
Lack of access to psychiatrists, psychologists, and counselors in Australian Palliative Care Services remains a significant issue and has become more prevalent since 1999. Ongoing advocacy and increased government funding to enable psychological health professionals to be readily employed in Palliative Care Services is vital.
This study aimed to validate the Japanese versions of the Trust in Oncologist Scale (TiOS-J) and the TiOS-Short Form (TiOS-SF-J).
Methods
A cross-sectional web-based survey was conducted among cancer patients in Japan. The forward-backward translation method was used to develop the TiOS-J. The web-based survey was mailed to 633 people, of whom 309 responded. After 2 weeks, 103 among the 156 first-time respondents completed the second survey to verify the reliability of the retest method. The validity was evaluated by exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Spearman’s correlation coefficients between the Patient Satisfaction Questionnaire-Japanese, willingness to recommend the oncologist, trust in health care, and number of oncological consultations. To evaluate reliability, Cronbach’s α and test–retest correlation were calculated.
Results
The theoretically driven four-factor model and the EFA-driven one-factor model of the full-form TiOS-J (18 items) did not result in an acceptable fit; however, CFA supported the one-dimensionality of the 5 items from the TiOS-SF-J (χ2 (5) = 12.36, p = 0.03, goodness-of-fit index = 0.984, adjusted goodness-of-fit index = 0.952, comparative fit index = 0.991, and root mean square error of approximation = 0.069). With regard to the reliability of TiOS-J and TiOS-SF-J, the Cronbach’s alpha values were 0.94 and 0.89, respectively; the test–retest values were 0.82 and 0.78.
Significance of Results
This study indicated that the TiOS-J and TiOS-SF-J are valid and reliable instruments for measuring patients’ trust in their oncologists and can be used to assess trust in oncologists for both clinical and research purposes.
Adherence plays a vital role in the effectiveness of non-pharmacological interventions. The disappearance of interventions’ effects at follow-up was caused by inadequate self-practice beyond intervention period. The purpose of this study is to examine the factors associated with adherence to aerobic exercise and Tai Chi and the impact of adherence on the short- and long-term effectiveness in improving sleep in patients with advanced lung cancer.
Methods
This study analyzed data collected in a clinical trial that evaluated the effects of aerobic exercise and Tai Chi in patients with advanced lung cancer. Two types of exercises were maintained at the same intensity but with different dosage. A total of 99 patients with advanced lung cancer who were recruited between 2018 and 2020 were included. Data were collected using self-report questionnaires.
Results
Fifty participants were randomly assigned to aerobic exercise and 49 to Tai Chi intervention. Higher levels of satisfaction and lower levels of depression were significantly associated with higher attendance and compliance in both groups. Low fatigue levels contributed to higher attendance in Tai Chi. Both attendance and compliance were significantly associated with long-term sleep improvement.
Significance of results
Higher levels of satisfaction and lower levels of depression were important characteristics of attendance and compliance with home-based practice in both groups, whereas lower levels of fatigue uniquely contributed to higher attendance in Tai Chi. Better exercise adherence improves long-term effectiveness of sleep in patients with advanced lung cancer. Adopting strategies is imperative to promote exercise adherence in patients with greater levels of depression and fatigue.
Definitions of spirituality abound; however, the importance of context and need for better understanding within health-care practice has been emphasized. In particular, the understanding of spirituality for nurses has been shown to have an impact both professionally and personally.
Methods
This study used a conceptual analysis to explore the understanding of spirituality by German-speaking nurses in an educational context.
Results
A total of 91 nursing students (83.5% female, 16.5% male) took the spiritual care course between January 2022 and January 2023. The majority of participants (n = 63, 69.6%) were in the 26- to 40-year age bracket, 50 (54.9%) identified themselves as Christian, 15 (16.5%) chose other, 12 (13.2%) atheist, 6 (6.6%) humanist or agnostic, and 2 (2.2%) Buddhist. A conceptual analysis of nursing students’ written responses to the question “What is spirituality to me?” was conducted. Two overarching categories were identified. The first category was titled “What aspects or characters are linked to spirituality?” and included 5 subcategories: people, life, experience, a sense of security, and capacity. The second category was titled “How is spirituality experienced, practiced and lived?” and included 5 subcategories: sometimes just a hug, to align one’s life with that purpose, to be content with myself, conscious attention to oneself, and demarcation from religion. These subcategories were interrelated to one another.
Significance of results
These findings have implications for how spirituality is introduced in nursing education.
Hematopoietic stem cell transplantation (HSCT) or intensive chemotherapy for the treatment of malignant diseases is a highly distressing experience. The affected person’s resilience is crucial to coping with this challenging experience. Experience with resilience-enhancing interventions in children and young adults during cancer therapy is scarce. The major objective of this work was developing and evaluating an effective psycho-oncological mental training that complements the standard psychosocial care.
Methods
In this prospective, randomized single-center study, a total of 30 patients (12 to 22 years of age) who underwent HSCT or high-dose chemotherapy received either the standard psychosocial care (control group [CG]) or additionally underwent a novel and specifically developed resilience-enhancing 14-session mental training (therapy group [TG]). The patients were observed over an 8-month period and were screened for distress, thyroid, and immune function parameters, as well as generalized anxiety, affect, and sports orientation.
Results
Patients of the TG showed significantly greater improvements in all assessed mental aspects, including anxiety, affect, competitiveness, win orientation, goal orientation, self-optimization, self-blocking, and loss of focus, as well as cortisol levels within 8 months, as opposed to patients of the CG (effect size range ξ: 0.74–1.00).
Significance of results
Patients who underwent the mental training displayed less anxiety, better affect, and improved mental performance with less self-blocking. This resulted in improved goal orientation, competitiveness, self-optimization, and focus when compared to the CG patients. However, larger prospective trials are necessary to substantiate these findings.
Pediatric health-care workers often care for families of minority religious backgrounds, but little is known about their perspective in providing culturally and spiritually appropriate care for Muslim patients. We aimed to (1) characterize the attitudes, knowledge, and skills of health-care workers in the care of critically ill Muslim children and (2) evaluate preferences for different educational interventions to improve care of critically ill Muslim children.
Methods
We administered a single-center, cross-sectional, 33-question, electronic survey of interdisciplinary health-care workers in a large pediatric intensive care unit in New York City to characterize their attitudes, knowledge, and skills in caring for critically ill Muslim children.
Results
Of 413 health-care workers surveyed, there were 109 (26%) respondents. Participants responded correctly to 51.7 ± 22.2% (mean ± SD) and 69.2 ± 20.6% of background knowledge and clinical skills questions, respectively. Only 29.8% of participants perceived adequate institutional resources to provide culturally competent care to Muslim patients and their families. Participants identified end-of-life care (47.5%) and bioethical concerns (45%) as needed areas for additional institutional resources. When asked about support to aid in caring for Muslim patients, 43.4% of participants requested a team of Muslim health-care workers to provide guidance. Participants most often requested video-based training modules (32.5%) and written materials (30%) as potential educational interventions.
Significance of results
We identify gaps in health-care worker knowledge and skills in the care of the critically ill Muslim child. We also describe possible areas for intervention to facilitate culturally and spiritually appropriate care delivery to Muslim children and families.
Limited evidence investigates how knowledge, misconceptions, and beliefs about palliative care vary across patients with cancerous versus non-cancerous chronic disease. We examined the knowledge of and misconceptions about palliative care among these groups.
Methods
We used weighted data from the National Cancer Institute Health Information National Trends Survey 5 (Cycle 2) for nationally representative estimates and logistic regression to adjust for respondent characteristics. We identified respondents who reported having (1) cancer ([n = 585]; breast, lung, and colorectal), (2) chronic conditions ([n = 543]; heart failure, lung disease, or chronic obstructive pulmonary disorder), or (3) neither cancer nor other chronic conditions (n = 2,376).
Results
Compared to cancer respondents, chronic condition respondents were more likely to report being Black or Hispanic, report a disability, and have lower socioeconomic status. In the sample, 65.6% of cancer respondents and 72.8% chronic conditions respondents reported they had never heard of palliative care. Chronic condition respondents were significantly (p < 0.05) less likely to report high palliative care knowledge than cancer respondents (9.1% vs. 16.6%, respectively). In adjusted analyses, cancer respondents had greater odds of high palliative care knowledge (odd ratio [OR] = 1.70; 95% confidence interval [CI] = 1.01, 2.86) compared to respondents with neither cancer nor chronic disease; chronic condition respondents did not have increased odds (OR = 0.96; CI = 0.59, 1.54).
Significance of results
Disparities in palliative care knowledge exist among people with non-cancerous chronic disease compared to cancer. Supportive educational efforts to boost knowledge about palliative care remains urgent and is critical for promoting equity, particularly for underserved people with chronic illnesses.