Challenges of palliative care identified by stakeholders in resource-limited settings: A multi-regional study in Kazakhstan.

INTRODUCTION: In Kazakhstan, a country of 19 million residents, more than 100,000 patients need palliative care. Since at least one family member is usually involved in the care of a terminal patient, more than 200,000 people would benefit from high-quality palliative care services in the country. However, with only 45 physicians and 101 nurses attending to 1925 palliative beds, Kazakhstan seeks to develop palliative services that meet the national needs in resource-limited settings and international standards. The objectives of this study are to explore the challenges faced by stakeholders involved in palliative care in Kazakhstan and to subsequently provide recommendations that can guide policymakers towards further developing palliative care services in the country. METHODS: This cross-sectional descriptive study collected narrative data with in-depth interviews from n= 29 palliative stakeholders (family caregivers n= 12, healthcare professionals =12, administrators n= 5) across five regions of Kazakhstan. Verbatim transcripts of interviews were analyzed using content analysis to identify needs and challenges of stakeholders involved in palliative care. RESULTS: Our analysis identified seven main challenges of palliative care stakeholders: high out-of-pocket expenditures; lack of mobile palliative care services for home-based care; severe shortages of opioids to prevent pain suffering; poor formal palliative care education; absence of practical skills training for family caregivers; lack of awareness about palliative care in the society, and lack of state support. CONCLUSION: Implementation of national palliative care strategies and policies require a large-scale coordinated involvement of all stakeholders. Our recommendations are based on the idea that coordinated, targeted, and tailored stakeholder engagement is preferred to a one-size-fits-all strategy.

Modes of responsibility in disclosing cancer genetic test results to relatives: An analysis of Swiss and Korean narrative data.

OBJECTIVE: We examined how responsibility (the "duty to inform relatives about genetic testing results") is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. METHODS: In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons. RESULTS: We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives' decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms. CONCLUSION: Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information. PRACTICE IMPLICATIONS: Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families. TRIAL REGISTRATION NUMBER: NCT04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020).

The Impact of COVID-19 on Mental Healthcare Utilization in Switzerland Was Strongest Among Young Females-Retrospective Study in 2018-2020.

Objectives: To provide a thorough assessment of the impact of the COVID-19 pandemic on the utilization of inpatient and outpatient mental healthcare in Switzerland. Methods: Retrospective cohort study using nationwide hospital data (n > 8 million) and claims data from a large Swiss health insurer (n > 1 million) in 2018-2020. Incidence proportions of different types of psychiatric inpatient admissions, psychiatric consultations, and psychotropic medication claims were analyzed using interrupted time series models for the general population and for the vulnerable subgroup of young people. Results: Inpatient psychiatric admissions in the general population decreased by 16.2% (95% confidence interval: -19.2% to -13.2%) during the first and by 3.9% (-6.7% to -0.2%) during the second pandemic shutdown, whereas outpatient mental healthcare utilization was not substantially affected. We observed distinct patterns for young people, most strikingly, an increase in mental healthcare utilization among females aged <20 years. Conclusion: Mental healthcare provision for the majority of the population was largely maintained, but special attention should be paid to young people. Our findings highlight the importance of monitoring mental healthcare utilization among different populations.

Phytotherapy in paediatric skin disorders - A systematic literature review.

OBJECTIVES: Although skin disorders in children and adolescents are increasingly treated with phytotherapies in practice, there are very few studies investigating this topic, and no systematic review exists that summarizes the current state of research. This review examines which herbal medicines show to be effective to treat atopic dermatitis, diaper dermatitis, and skin lesions or wounds. METHODS: Clinical studies were searched according to PRISMA-guidelines in the medical databases of PubMed, EMBASE, and CINAHL and summarised in a systematic review. RESULTS: Among the 429 articles screened, 17 studies with a total of 2358 participants were identified that suited our inclusion criteria. Thereof seven studies each on the treatment of atopic dermatitis and skin lesions or wounds and three on diaper dermatitis. The phytotherapeutics investigated were based on the following herbs: Evening primrose, blackcurrant, polypodium leucotomos, calendula, aloe vera, chamomile, comfrey, hamamelis, olive, hypericum, neem, white oak, and myrrh. They have mainly been analysed in randomized controlled trials, but also in (long-term) observational studies, prospective trials and case series. CONCLUSIONS: Based on the application of the Jadad score, eight out of 17 of the studies examined were of low quality. Yet we found some indication that evening primrose oil may be effective for treating atopic dermatitis in children, while comfrey appears to have a positive effect on wound healing. Interestingly, none of the studies found positive effects for treating skin disorders with aloe vera or chamomile.

Predicting Openness of Communication in Families With Hereditary Breast and Ovarian Cancer Syndrome: Natural Language Processing Analysis.

BACKGROUND: In health care research, patient-reported opinions are a critical element of personalized medicine and contribute to optimal health care delivery. The importance of integrating natural language processing (NLP) methods to extract patient-reported opinions has been gradually acknowledged over the past years. One form of NLP is sentiment analysis, which extracts and analyses information by detecting feelings (thoughts, emotions, attitudes, etc) behind words. Sentiment analysis has become particularly popular following the rise of digital interactions. However, NLP and sentiment analysis in the context of intrafamilial communication for genetic cancer risk is still unexplored. Due to privacy laws, intrafamilial communication is the main avenue to inform at-risk relatives about the pathogenic variant and the possibility of increased cancer risk. OBJECTIVE: The study examined the role of sentiment in predicting openness of intrafamilial communication about genetic cancer risk associated with hereditary breast and ovarian cancer (HBOC) syndrome. METHODS: We used narratives derived from 53 in-depth interviews with individuals from families that harbor pathogenic variants associated with HBOC: first, to quantify openness of communication about cancer risk, and second, to examine the role of sentiment in predicting openness of communication. The interviews were conducted between 2019 and 2021 in Switzerland and South Korea using the same interview guide. We used NLP to extract and quantify textual features to construct a handcrafted lexicon about interpersonal communication of genetic testing results and cancer risk associated with HBOC. Moreover, we examined the role of sentiment in predicting openness of communication using a stepwise linear regression model. To test model accuracy, we used a split-validation set. We measured the performance of the training and testing model using area under the curve, sensitivity, specificity, and root mean square error. RESULTS: Higher "openness of communication" scores were associated with higher overall net sentiment score of the narrative, higher fear, being single, having nonacademic education, and higher informational support within the family. Our results demonstrate that NLP was highly effective in analyzing unstructured texts from individuals of different cultural and linguistic backgrounds and could also reliably predict a measure of "openness of communication" (area under the curve=0.72) in the context of genetic cancer risk associated with HBOC. CONCLUSIONS: Our study showed that NLP can facilitate assessment of openness of communication in individuals carrying a pathogenic variant associated with HBOC. Findings provided promising evidence that various features from narratives such as sentiment and fear are important predictors of interpersonal communication and self-disclosure in this context. Our approach is promising and can be expanded in the field of personalized medicine and technology-mediated communication.

The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer.

Low uptake of genetic services among members of families with hereditary breast and ovarian cancer (HBOC) suggests limitations of proband-mediated communication of genetic risk. This study explored how genetic information proceeds from healthcare providers to probands and from probands to relatives, from the probands' perspectives. Using a grounded-theory approach, we analyzed narrative data collected with individual interviews and focus groups from a sample of 48 women identified as carriers of HBOC-associated pathogenic variants from three linguistic regions of Switzerland. The findings describe the "communication chain", confirming the difficulties of proband-mediated communication. Provider-proband communication is impacted by a three-level complexity in the way information about family communication is approached by providers, received by probands, and followed-up by the healthcare system. Probands' decisions regarding disclosure of genetic risk are governed by dynamic and often contradictory logics of action, interconnected with individual and family characteristics, eventually compelling probands to engage in an arbitrating process. The findings highlight the relevance of probands' involvement in the communication of genetic risk to relatives, suggesting the need to support them in navigating the complexity of family communication rather than replacing them in this process. Concrete actions at the clinical and health system levels are needed to improve proband-mediated communication.

A Systematic Review and Bayesian Network Meta-Analysis Investigating the Effectiveness of Psychological Short-Term Interventions in Inpatient Palliative Care Settings.

This paper reviews and summarises the evidence of short-term psychosocial interventions (up to 12 sessions delivered within less than eight weeks) on anxiety, depression, and emotional distress in palliative patients in inpatient settings. We screened publications from the following five databases, Embase, PubMed, PsycINFO, Web of Science, and CINAHL, from their inception to 10 September 2021. The eligible studies included controls receiving standard palliative care, actively treated controls, and wait-list controls. Nine studies met the eligibility criteria and reported the effects of five psychosocial interventions in a total of N = 543 patients. We followed PRISMA-guidelines for outcome reporting and the Cochrane Risk of Bias Assessment Tool for assessing study quality. This paper used the network meta-analysis to compare multiple treatments by providing greater statistical power and the cross-validation of observed treatment effects, using the R package BUGSnet. Compared to control groups, the following psychosocial interventions in inpatient settings showed to be superior: life review interventions were the best ranked treatment for improving anxiety and distress, while the top ranked treatment for reducing depression was outlook intervention. The short-term psychosocial interventions investigated in this meta-analysis, especially life review intervention, are feasible and can potentially improve anxiety, depression, and distress in palliative inpatients and should therefore be offered in inpatient settings.

Organizational determinants of information transfer in palliative care teams: A structural equation modeling approach.

Several organizational factors facilitate or hinder information transfer in palliative care teams. According to past research, organizational factors that reduce information transfer include the inconsistent use of shared electronic patient files, frequent changes of healthcare staff, a lack of opportunities for personal exchange, and a lack of evaluation of collaborative processes. Insufficient information sharing between professionals can negatively impact patient safety, whereas studies have shown that some organizational factors improve collaboration between professionals and thus contribute to improved patient outcomes. The main purpose of this study is thus to investigate whether, and if so how, organizational factors contribute to successful information exchange in palliative care teams in Switzerland, while also accounting for the different care contexts of primary and specialized palliative care. A nationwide survey was aimed at medical professionals working in palliative care. In total, 379 participants (mean age = 49.8 years, SD = 10.3) were included in this study. Two main outcome variables were examined: healthcare providers' satisfaction with information transfer in their team and their overall satisfaction with communication in their team. Hypotheses were tested by employing structural equation modeling. Findings revealed that the strongest predictors for effective information transfer in palliative care teams were sufficient opportunities for face-to-face meetings and supervision alongside feedback tools to improve collaborative practices and the application of guidelines and standards for collaboration. Face-to-face meetings were an even greater contributor to information transfer in specialized settings, whereas sharing the same work-based values with colleagues was considered more important in primary settings. Results from this study contribute to the existing literature elucidating how information transfer is facilitated in the field of palliative care. If proposed measures are implemented, this could possibly improve patient outcomes in palliative care. Furthermore, the findings can be useful for healthcare organizations and associations to make more efficient resource allocation decisions with the aim to optimize information transfer within the workforce.

An investigation of the challenges to coordination at the interface of primary and specialized palliative care services in Switzerland: A qualitative interview study.

Good coordination of healthcare services is vital for ensuring health cost efficiency and high-quality care for patients. It is especially important in the context of palliative care as services are often highly fragmented due to a combination of diverse professional groups, organizations, and approaches to care. However, the coordination of services in this field is often evaluated as insufficient. Little is known about the challenges to coordination in this sector in Switzerland. The present study addresses this gap in research by investigating the challenges to coordination at the interface of palliative care services in Switzerland. Interviews (n = 24) with 38 healthcare practitioners working in palliative care in four cantons (Basel-City, Lucerne, Ticino, and Vaud) form the basis for this investigation. The selected cantons not only represent French, Italian, and German language regions of Switzerland but also represent diverse rural, urban, and historical contexts. Expert interviews are analyzed using structural content analysis. Three clusters of challenges to coordination were identified in the data: (1) organizational challenges to coordination, which relate to explicit forms of coordination; (2) relational challenges to coordination; and (3) structural challenges to coordination, which relate to implicit forms of coordination. The study reveals a need for better financial support for coordination in palliative care and a stronger focus on interprofessional coordination in educating professionals in palliative care. Future research on how to further foster good team coordination practices between primary and specialized palliative services merits further investigation. Since these findings are indicative of areas for improvement for coordination at the interface of Swiss palliative care services, they are of particular interest for healthcare practitioners, policymakers, and researchers involved in the evolution of coordinative practice.

Care Coordination in Palliative Home Care: Who Plays the Key Role?

BACKGROUND: Clearly identified professionals who are appointed for care coordination are invaluable for ensuring efficient coordination of health care services. However, challenges to identifying roles in palliative care are well documented in literature. Notably, in order to meet high demands on palliative home care settings, many care practitioners perform tasks that surpass the responsibilities and regulations of their role, including care coordination. Without clearly defined roles, standards of care cannot be guaranteed. Yet, little is understood about who plays the key role in palliative home care. AIM: The present study aims to address the gap in the research by identifying who plays a key role in coordination in palliative home care. METHODS: Interviews with general practitioners (GPs), nurses and relatives of palliative patients were carried out in Swiss cantons (Vaud, Ticino, Luzern and Basel) to identify key coordinators of care. Interviews were analyzed using content analysis and presented using grounded theory. RESULTS: Findings indicated that there was considerable ambiguity of the key coordinator role. 1) Causal conditions of this phenomenon were; informality of professional roles and lack of communication between team members, 2) Consequences of this included; conflicting understandings of key coordinator role and family members feeling overburdened, 3) Strategies adopted by interviewees included; adapting or taking control of care coordination. These findings are highly indicative of areas for improvement for care coordination in palliative home care settings. Specifically, they underline a profound need for clear communication between palliative care service providers regarding which professionals assume a key coordative role, or who are delegated a coordinative role at any given time. Crucially, since the findings reveal that relatives are intimately involved in care coordination, the findings point to a lack of adequate financial and psycho-social support for relatives of palliative patients who are burdened with coordination tasks, without the appropriate recompense.