Search Results (32)

Pediatric palliative care (PPC) aims to enhance the quality of life of children with life-limiting conditions and their families through individualized, interdisciplinary support. Among this population, children with neurological diseases represent a substantial and growing group, often facing prolonged disease courses, cognitive impairment, and high prognostic uncertainty. Effective communication is central to PPC; however, it remains deeply influenced by cultural, religious, and spiritual frameworks that shape family perceptions of illness, suffering, and decision-making. This narrative review explores communication strategies in PPC, with a specific focus on children with neurological conditions, highlighting conceptual foundations, cross-cultural variations, and emerging best practices. Key findings highlight the importance of culturally humble approaches, family-centered communication models, and structured tools, such as co-designed advance care planning and dignity therapy, to enhance communication. Additionally, the review highlights the presence of ethical and interdisciplinary challenges, particularly in neonatal and neurology settings, where misaligned team messaging and institutional hesitancy may compromise trust and timely referral to palliative care. Future research, policy, and clinical education priorities should advocate for models that are inclusive, ethically grounded, and tailored to the unique trajectories of neurologically ill children. Integrating cultural competence, team alignment, and family voices is essential for delivering equitable and compassionate PPC across diverse care settings. Full article

This article describes the design and implementation of a Specialized Mental Health Clinical Pastoral Education (CPE) program for clergy and theological students of all spiritual, religious, and cultural backgrounds. Addressing the need for mental health competencies in religious leaders and chaplains, this training equips participants with specialized skills in individual and group mental health spiritual assessment and spiritual care. Program participants become effective members of a multiprofessional team, gain knowledge of mental health philosophies of concordant and discordant spiritual orienting systems, and gain greater relational capacity. The Mental Health CPE Program includes traditional and novel CPE elements: (1) clinical practice, (2) group and individual supervision, (3) didactic presentations and journal clubs, (4) verbatim (Protocols of patient encounters) and case presentations, (5) group leadership training and practica, and (6) experience of faith reflections. This article provides insights into the origins of CPE, a description of the implementation in a free-standing psychiatric hospital, and observed developmental changes of program participants. We include graduates’ anecdotal feedback about their learning experience and its impact on their leadership in chaplaincy and in religious communities. Additionally, we report on areas for future development and further study of the effectiveness of Mental Health CPE. Full article

Background: The diagnosis and treatment of cancer are associated with substantial physical, psychological, and social morbidity for most patients. Distress can be seen as an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer treatment. Purpose: The aim was to understand patients’ experiences of distress in their context and to analyze and interpret the findings. Method: An explorative, descriptive qualitative study was conducted among cancer patients receiving treatment and care at rural hospitals in Limpopo. A face-to-face individual interview was conducted to determine the participants’ cancer-related experiences and quality of life. Thematic analysis was conducted following Tesch’s method, and the themes developed were subjected to a triangulation process to ensure the validity and rigor of the findings. Findings: The participants revealed experiences of symptomatic distress resulting in biopsychosocial distress such as pain, fatigue, emotional distress related to prognosis and uncertainty about the future, psychosocial distress related to a lack or absence of support, financial instability, and poor self-esteem. Conclusions: Cancer patients face many challenges during their treatment journey. Participants were drained by anxiety and uncertainty of the cancer trajectory and required psychosocial support. The oncology team must provide supportive preventive measures for side effects management and culture-sensitive psychotherapy at an early stage to improve their quality of life. Full article

Background: Spiritual care for patients at the end of life is an important element in their holistic care. The aim of this study is to assess the opinions of cancer patients with limited prognosis about the importance of faith in fighting illness and the factors contributing to a better adjustment to illness and to their self-reconciliation and spiritual well-being. Material and Methods: This study used a specially designed questionnaire for cancer patients with limited prognosis. The 30 respondents were patients with an estimated prognosis of less than 1 month, cared for in a unit with palliative and home care beds. Results: The patients emphasized the importance of family as a supporter in the fight against disease (90%), followed by faith (66.7%) and a care team (63.3%). The most common concerns expressed were related to the course of their disease, family distress, fear of death, and the Russian–Ukrainian war. Conclusion: Family and faith represent important factors in supporting and caring for a patient at the end-of-life. Patients who felt spiritually at peace and were supported in their faith by family and a priest had a better spiritual state. Full article

Aim: To describe the latest scientific evidence regarding community-based interventions performed on patients in need of palliative care worldwide. Introduction and background: Given the rise of chronic diseases, their complexities and the fragility of patients, we are facing around 56.8 million people in need of palliative care. Community-based healthcare, particularly palliative care, can address social inequalities and improve the biopsychosocial health of disadvantaged populations. Therefore, primary care, as the main health referent in the community, has a central role in the care of these patients. Methods: This is an integrative review from January 2017 to June 2022 that follows the PRISMA statement and has been registered in PROSPERO. PubMed, Cuiden, the Web of Science (WoS), Cochrane and LILACS were the five databases searched. The scientific quality assessment of the articles was carried out following the CASPe methodology. Study selection was carried out by two researchers, A.V.L. and J.M.C.T., using the inclusion and exclusion criteria mentioned below. In cases of doubt or discrepancy, a third author (J.R.S.) was consulted. Results: The interventions mentioned in the 16 articles analysed were classified under the following categories: music therapy, laughter therapy, spiritual and cognitive interventions, aromatherapy, interdisciplinary and community-based teams, advance care planning and community, volunteering, telemedicine and care mapping. Example: Educating people to talk about different ethical issues could improve their quality of life and help develop more compassionate cities. Conclusions: We have identified interventions that are easily accessible (laughter therapy, telemedicine or music therapy), simple enough to be carried out at the community level and do not incur high costs. This is why they are recommended for people with palliative care needs in order to improve their quality of life. Full article

The importance of spirituality in the treatment of mental illness is increasingly acknowledged, but mental healthcare professionals often feel they lack specific competence. An instrument is missing to quantify the spiritual care competence of mental healthcare professionals in the Netherlands. The aim of this study was thus to translate the Spiritual Care Competence Questionnaire (SCCQ) into Dutch and validate it for use in mental healthcare. After translation, the SCCQ-NL was distributed in a cross-sectional design among 3497 healthcare professionals in two mental healthcare institutions (MHIs) in the Netherlands. In the sample of 730 completed questionnaires, exploratory factor analysis revealed seven factors: perception of spiritual needs competencies, team spirit, spiritual self-awareness, documentation competencies, empowerment and proactive opening competencies, knowledge about other religions, and conversation competencies. One item was deleted during the process. Internal consistency for the 25-item SCCQ-NL subscales is sufficient with Cronbach’s alpha ranging from 0.64 to 0.81. Conversation competencies and perception of spiritual needs scored highest in the sample, next to knowledge about other religions and empowerment competencies, while spiritual self-awareness, team spirit and documentation competencies scored the lowest. Small but significant differences in several subscale scores were found for profession, identifying oneself as a believer, practicing prayer and/or meditation, age and working years. The SCCQ-NL can be used for the assessment of spiritual care competencies and for the planning and evaluation of training and improvement strategies. Full article

The continuing increase in patient numbers and improvement in healthcare provisions of HIV services in the UK, alongside the effectiveness of combined antiretroviral therapy (cART), has resulted in increasing numbers of the ageing population among people living with HIV (PLWH). It is expected that geriatricians will need to deal with many older people living with HIV (OPLWH) as life expectancy increases. Therefore, geriatric syndromes in OPLWH will be similar to the normal population, such as falls, cognitive decline, frailty, dementia, hypertension, diabetes and polypharmacy. The increase in the long-term use of cART, diabetes, dyslipidaemia and hypertension may lead to high prevalence of cardiovascular disease (CVD). The treatment of such conditions may lead to polypharmacy and may increase the risk of cART drug–drug interactions. In addition, the risk of developing infection and cancer is high. OPLWH may develop an early onset of low bone mineral density (BMD), osteoporosis and fractures. In this review, we have also provided potential psychosocial aspects of an ageing population with HIV, addressing issues such as depression, stigma, isolation and the need for comprehensive medical and psychosocial care through an interdisciplinary team in a hospital or community setting. OPLWH have a relatively high burden of physical, psychological, and spiritual needs and social difficulties, which require palliative care. The holistic type of palliative care that will improve physical, emotional and psychological wellbeing is discussed in this review. Full article

Background: In a patient-centred model of care, referral to early palliative care (EPC) depends on both the prognosis and the complexity of care needs. The PALCOM scale is a 5-domain multidimensional assessment tool developed to identify the level of complexity of palliative care needs of cancer patients. The aim of this study was to validate the PALCOM scale. Patient and methods: We conducted a prospective cohort study of cancer patients to compare the PALCOM scale and expert empirical assessment (EA) of the complexity of palliative care needs. The EA had to categorise patients according to their complexity, considering that medium to high levels required priority attention from specialist EPC teams, while those with low levels could be managed by non-specialist teams. Systematically collected multidimensional variables were recorded in an electronic report form and stratified by level of complexity and rating system (PALCOM scale versus EA). The correlation rank (Kendall’s tau test) and accuracy test (F1-score) between the two rating systems were analysed. ROC curve analysis was used to determine the predictive power of the PALCOM scale. Results: A total of 283 advanced cancer patients were included. There were no significant differences in the frequency of the levels of complexity between the EA and the PALCOM scale (low 22.3–23.7%; medium 57.2–59.0%; high 20.5–17.3%). The prevalence of high symptom burden, severe pain, functional impairment, socio-familial risk, existential/spiritual problems, 6-month mortality and in-hospital death was significantly higher (p < 0.001) at the high complexity levels in both scoring systems. Comparative analysis showed a high correlation rank and accuracy between the two scoring systems (Kendall’s tau test 0.81, F1 score 0.84). The predictive ability of the PALCOM scale was confirmed by an area under the curve in the ROC analysis of 0.907 for high and 0.902 for low complexity. Conclusions: In a patient-centred care model, the identification of complexity is a key point to appropriate referral and management of shared care with EPC teams. The PALCOM scale is a high precision tool for determining the level of complexity of palliative care needs. Full article

Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being. Research Aims: To explore how midwives are impacted by and cope with high rates of very early neonatal deaths. To document midwives’ insights and local solutions that may reduce very early neonatal deaths in limited resource settings. To document the stories of midwives in order to create awareness and garner support for midwives and their critical work in low resource settings. Methods: Narrative inquiry utilizing semi structured interviews. Twenty-one midwives with at least six months experience who had experienced or witnessed very early neonatal death were interviewed. Data were audio recorded and transcribed, and reflexive thematic analysis of transcripts was conducted. Results and Discussion: Three themes were identified: (1) deep sadness resulting from very early neonatal deaths leading to internal struggles; (2) use of spirituality, including prayer and occasional beliefs that unexplainable deaths were ‘God’s plan’; and (3) development of resilience by seeking solutions, educating themselves, taking accountability and guiding mothers. Participating midwives noted that inadequate staff and high caseloads with limited basic supplies hindered their clinical practice. Participants articulated that they concentrated on active solutions to save babies during labour, such as vigilant foetal rate heart monitoring and partogram. Further, reduction and prevention of very early neonatal death is a complex problem requiring multidisciplinary teams and woman-centred care approaches to address issues contributing to the health of mothers and their new-borns. Conclusions: Midwives’ narratives highlighted ways of coping with grief and deep sadness, through prayer, and further education of both mothers and fellow colleagues to achieve better antenatal and intrapartum care and outcomes. This study gave midwives an opportunity for their voices to be heard and to generate solutions or insights that can be shared with colleagues in similar low-resource settings. Full article

Palliative care is intended to relieve caregivers of physical, psychological, and even spiritual elements of care. One of the most prevalent issues facing this form of care is a lack of healthcare resources and structures to deal with an aging population. This aging population is placing a strain on the healthcare system, prompting a need for a shift in system management. A potential answer to this issue may be the Multi-Agent System (MAS). This category of computerized networking system was created by programmers to gather relevant health information on a patient and allow for the system to act with other agents to decide the best course for disease management. It can also allow for a multidisciplinary healthcare team to make more informed plans of actions for their patients by providing accurate and up-to-date information resulting from a greater synergetic mesh. MASs could fulfill the demands of a rising chronic illness population and deliver high-quality care, indicating a major paradigm shift within the US. In this review, we will evaluate the aging population and contributing factors, palliative care and the need for the multi-agent system, and clinical considerations involving examples from healthcare systems both on and beyond US shores. Full article

Communication between the multidisciplinary team, the person, and the family in palliative and end-of-life situations implies, in most situations, a high negative emotional burden. Therefore, innovative strategies are needed to reduce it. The goal of this study is to describe the various stages of development and validation of a collaborative card game for people in palliative care and their families. Phase one is an exploratory study, Phase two is a Delphi study, and Phase three is a multiple case study. Participants for phases 2 and 3 were recruited using a convenience sampling method. The results demonstrate in an organized and structured way the different phases required to build a collaborative card game. The use of the game was found to be useful and effective. Four categories emerged from the content analysis of the open-ended responses: usability, evaluation tool, communication and therapeutic relationship, and meaning when using the game. A collaborative game in palliative care helps to create a space for individuals and families to express feelings and experiences, meeting the myriad of physical, psychosocial, and spiritual needs. The “Pallium game” is a useful and impactful approach to discussing sensitive topics in palliative care. Full article

Background: Critical Care Providers (CCPs) experience situations that challenge their ethics and professional standards and may entail moral distress (MD). Aim: To analyze MD perceived by CCPs in intensive care units (ICUs) or emergency departments (EDs) and further clarify whether CCPs who rely on spiritual resources differ in their perception of MD from those who do not utilize these resources. Methods: A cross-sectional anonymous survey was administered using a modified version of the German language version of the Moral Distress Scale (MDS) with 2 × 12 items to assess the frequency and the respective perceived burden of specific situations by applying a 5-point Likert scale. Explorative factor analysis was performed and the sub-constructs of the respective items regarding MD frequency and burden were identified. Job burden and professional satisfaction were measured using visual analogue scales (VAS) and a four-point Likert scale, respectively. The 15-item SpREUK questionnaire was applied to measure spiritual attitudes and behaviours and to differentiate between religious and spiritual persons. Data from 385 German-speaking CCPs were included (55% physicians, 45% nurses). Results: Conflict situations are similar for physicians and nurses although they are perceived as more burdensome by nurses. Among physicians, the MDS factor Looking away/Resignation scores highest for assistant physician residents, whereas distress caused by looking away is more often perceived by specialist physicians without a managerial position. Work satisfaction is inversely associated with MD and emotional exhaustion is positively associated with it. Participants’ spirituality is marginally associated with MD. The best predictors of both MD frequency and burden are emotional exhaustion with further influences of work satisfaction, being a nurse, and being a non-believer on the frequency of MD perception. Being a nurse, participants’ experience in ICU/ED, and being of the male gender are further predictors of MD burden. Conclusions: MD is experienced differently by different groups of CCPs depending on their place in the hierarchy of responsibility. As MD perception is best predicted by emotional exhaustion, these situations should be avoided. Although some CCPs may rely on spiritual resources, all need individual and team support to cope with MD. Full article

Background: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. Methods: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. Results: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. Conclusions: Future work is needed to determine SWs’/chaplains’ contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains. Full article

Despite the universality of death for humanity, end-of-life care needs and expectations are highly unique and influenced by the individual’s cultural conditioning, values, and beliefs. In the pursuit of quality end-of-life care provision within the increasingly complex and diverse contemporary medical context, it is vital for cultural idiosyncrasies to be taken into consideration in order to attend to the individual patient’s needs and end-of-life goals. Palliative chaplains, as the spiritual care specialists within the multidisciplinary healthcare team, play a crucial role in the support and facilitation of the holistic vision of end-of-life care delivery. However, the capacity of the chaplains to become culturally competent practitioners are often insufficiently addressed in their professional educational pathways, creating additional challenges for them in their practice. Using Hong Kong as a case study, this article examines the impact of cultural diversity on the effectiveness of the chaplains’ delivery of end-of-life spiritual care. Specifically, special attention will be focused on two identified challenges resulting from the lack of integration of local cultural understandings within the religion-cultural practice framework of chaplaincy formation: the cultural taboo of death, and the cultural idiosyncrasies in end-of-life communication. This article hopes to raise awareness of cultural incongruencies within the current chaplaincy professional formation and development, and to initiate further attention and efforts to support chaplains in becoming culturally competent practitioners in the pluralistic healthcare landscape. Full article

Wheelchair users have a lower life expectancy compared to the general population. This project aims to provide a deeper understanding of the interaction between physical, psychological, social, and spiritual factors that affect the mortality and health of this target group. The methods used were qualitative. Data from phenomenological interviews, questionnaires, medical reports, and existing literature were composed to develop a grounded theory depicting the overall health of wheelchair users. The research team explored death causes, risk factors of premature death, and contributors that affect risk factors. In the discussion, we explored and analyzed specific patterns of interaction of the factors in the data and other research projects. Moreover, we attempted to analyze these patterns through the viewpoint of the Greek-Orthodox tradition. In general, the project confirmed previous research findings. The most common death causes seemed to be heart attacks and cancer. These seemed to be affected mainly by obesity, physical inactivity, unhealthy lifestyle, and inadequate preventive healthcare. Spiritual practices based on the Greek-Orthodox tradition are suggested as ways of management. The conclusions can be useful not only to health and social care professionals and clerics, but also wheelchair users themselves. Full article