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The Institute of Medicine Roundtable on Health Literacy convened a 1-day public workshop to explore the relationship between palliative care and health literacy, and the importance of health literate communication in providing high-quality delivery of palliative care. Health Literacy and Palliative Care summarizes the discussions that occurred throughout the workshop and highlights the key lessons presented, practical strategies, and the needs and opportunities for improving health literacy in the United States.

This text is the definitive resource for practicing palliative social work clinicians. It is designed to meet the needs of professionals who seek to provide culturally sensitive biopsychosocial-spiritual care for patients and families living with life-threatening illness.

The sixth volume in the HPNA Palliative Nursing Manuals series, Social Aspects of Care provides an overview of financial and mental stress illness places, not just on the patient, but on the family as well. This volume contains information on how to support families in palliative care, cultural considerations important in end-of-life care, sexuality and the impact of illness, planning for the actual death, and bereavement. The content of the concise clinically focused volumes in the HPNA Palliative Nursing Manuals series is an ideal resource for nurses preparing for certification exams and provides a quick-reference in daily practice.

This book's striking message is that palliative care does not deliver on its aims to value people who are dying and make death and dying a natural part of life. This book draws from wider social science perspectives and critically and specifically applies these perspectives to palliative care and its dominant medical model. Applying Social Role Valorisation, the author argues for the de-institutionalisation of palliative care and the development of an alternative framework to the approaches found in hospices, palliative care units and community-based palliative care services. He offers a new conceptualisation of death and loss that refines and expands modern understandings in a way that also resonates with traditional religious views concerning death. Wide-ranging recommendations advise fundamental change in the concept of palliative care, the way support and services are organised and the day to day practice of palliative care. Rethinking palliative care will be of interest to academics, students and practitioners in palliative care as well as those in disability, social policy, sociology, social work, religion, thanatology, nursing and other health related fields.

Background The support of family caregivers is vital in home-based palliative care, ensuring quality care for patients with palliative care needs. In their commitment to prioritising the well-being of their loved ones, caregivers often neglect their own physical and emotional health, leading to varying degrees of caregiving burden. This study aims to estimate the prevalence of caregiver burden and identify the key factors associated with it among family caregivers of patients receiving services from a palliative care institution in Thiruvananthapuram district, Kerala. Methods This cross-sectional study included 270 family caregivers aged 18 years and above, providing care for three months to less than a year to patients registered at the selected palliative care institution between September 2023 and August 2024. Data was collected telephonically using a structured interview schedule and the burden level was assessed using the Achutha Menon Centre-Caregiver Burden Inventory. The distribution of burden levels was analysed and associations with study variables were examined using Chi-square test. Binary logistic regression was performed to identify significant predictors of moderate-to-high caregiver burden. A 95% confidence interval was used and a p value of ≤ 0.05 was considered to be statistically significant. Results Findings revealed that 54.8% of caregivers experienced moderate levels of burden. Factors associated with moderate to high burden included being employed, spending full time with the patient, experiencing a career break and perceiving that caregiving impacted their family’s future plans. Caregivers who faced difficulty in seeking help, struggled to balance work and home responsibilities, had existing diseases or experienced emotional and physical challenges in the past four weeks were more likely to report moderate-high burden. Lack of breaks, limited support, poor social connections outside home, insufficient time for self-care, deteriorating health post-caregiving and inadequate sleep also contributed to higher burden. Conclusion Findings emphasise the multifaceted challenges caregivers face, reinforcing the need for the implementation of comprehensive support mechanisms including emotional and psychosocial support, accessible respite care services and flexible workplace policies to reduce burden and enhance caregiver well-being.

Background Patients with cancer and their caregivers experience significant psychological, physical, and emotional burdens throughout the disease trajectory which reduces their quality of life (QoL). Early palliative care (EPC) has been proposed as a strategy to alleviate physical, psychological and emotional burdens and improve health outcomes. While evidence generally supports the benefits of EPC, variations in reported outcomes highlight the need for a deeper understanding of its impact across different patient populations and healthcare settings. Objective The primary aim of this study was to evaluate the pooled effects of EPC on psychological, functional status, and QoL outcomes in both cancer patients and their caregivers. The secondary aim was to evaluate the satisfaction of the patients and their family caregivers. Methods A systematic review and meta-analysis were conducted following the preferred reporting item for systematic review and meta-analysis (PRISMA) guidelines. Four databases, PubMed, Scopus, EBSCOhost, and Cochrane, were searched up to January 2024. This study included randomized controlled trial (RCT) and pilot-RCT studies reporting psychological outcomes (anxiety, depression), functional status, QoL, and satisfaction in cancer patients and their caregivers. Subgroup analysis was performed to explore the short-term (< 24 weeks) versus long-term (≥ 24 weeks) effects of EPC. Mean differences (MD) and standard mean differences (SMD) were calculated using a fixed-effects model according to the Mantel–Haenszel model and a random-effects model according to the DerSimonian and Laird method. Results A total of 24 studies met our inclusion criteria. For cancer patients, EPC significantly reduced anxiety (MD = -0.62, 95% CI: -1.02; -0.23, p  = 0.002) and improved QoL (SMD 0.13, 95%CI: 0.06; 0.19, p  = 0.0004). However, there was no significant reduction in depression (SMD -0.15, 95% CI: -0.36; 0.05, p  = 0.14) and improvement in functional status (MD = 2.14, 95% CI: -0.78; 5.06, p  = 0.15). Subgroup analysis revealed that long-term EPC significantly reduced anxiety and depression while improving QoL, but had no significant effects on functional status. For caregivers, EPC did not significantly impact either physical or mental QoL (Short form/SF-36 physical: MD = 0.81, 95% CI: -0.46; 2.09, p  = 0.21; SF-36 Mental: MD = 0.53, 95% CI: -1.03; 2.08, p  = 0.51). Moreover, satisfaction was more likely to be higher in patients and their caregivers who received EPC than in those who received usual care (MD 2.45, 95% CI: 0.90; 4.01, p  = 0.002, MD 4.09, 95% CI: 0.60; 7.58, p  = 0.02, respectively). Conclusion EPC reduces long term psychological burden and improve QoL and care satisfaction experience among patients with cancer. Therefore, EPC should be more broadly introduced into cancer care earlier to address patient’s psychological burdens.

Background Home-based health technologies for paediatric palliative care have great potential to improve care for children, caregivers, healthcare professionals, and health systems. However, no systematic reviews have directly addressed the intersections among the ethical, legal, and social aspects of these technologies for paediatric palliative care. The objective of this systematic review was to identify and analyse the ethical, legal, and social aspects of health technologies for home-based paediatric palliative care. Methods We have conducted a systematic review, inspired by the framework suggested by McCullough. We registered the review protocol in PROSPERO (CRD42024496034) and conducted a systematic search in six databases (ASSIA, Cinahl, Embase, Medline, PsycInfo, and Web of Science) on 27 November 2023 to identify relevant studies. Pairs of authors independently assessed the eligibility of the studies and extracted data. The eligible studies employed a range of different methods from randomised controlled trials to usability studies. We then synthesised the data according to the ethical, legal and social aspects of the technologies. Results Overall, our search resulted in 9,545 reports, which were screened after deduplication. The quality of the reports was assessed according to being published in peer reviewed journals. Fifteen reports were included, which showed that the main ethical issues are harm reduction, improved services, agency and autonomy, trust and empowerment. The main legal aspects are privacy equal access to care, participation in decisions and standardisation. The main social issues are cost reduction, transformation of family relations and novel modes of communication. Health technologies have the potential to alleviate burdens and improve the quality of care for children in paediatric palliative care and their families, but they also create novel burdens through constant reporting requirements and the vulnerability of some health technologies to technological malfunction. Nevertheless, they can increase family inclusion and children’s autonomy and participation, thus empowering children, particularly through co-development of solutions. Furthermore, studies have indicated that health technologies themselves may have positive effects on children’s health. The legal aspects of health technologies pertain to privacy and control over one’s health information and equitable access to care and participation in care, while social issues can potentially reduce costs for health systems but also involve novel costs. Conclusion The reviewed studies concerning the co-development of health technologies reported increased benefits in terms of health, agency, well-being, and strengthened children’s rights in home-based paediatric palliative care. However, the social dimensions of such technologies can lead to both public savings and reconfiguration of family constellations. We recommend that future researchers consider privacy, the formal dimensions of apps and smartphones, and their impacts on families. PROSPERO reference CRD42024496034.

Caring for a family member with a palliative diagnosis at home is physically and mentally stressful. This prospective study explores the emotional and physical burdens experienced by family caregivers in end-of-life palliative care settings, particularly focusing on those caregivers with high levels of pre-existing trait anxiety. The following hypotheses were examined: 1.) Family caregivers with high levels of trait anxiety suffer from high levels of anxiety, stress, burnout symptoms, insomnia, daytime sleepiness, physical complaints, health-related anxiety and resentments. 2.) Caregivers with a high level of trait anxiety are less resilient and receive less social support. They are more likely to use inappropriate strategies in the context of emotional regulation and work-related behavior. 3.) The support provided by the mobile palliative care team reduces stress and improves the quality of sleep of the caregiving relatives. Forty-seven caregivers participated, with assessments conducted at two time points: before the mobile palliative care team's intervention and six weeks later. Data collection included measures such as the State-Trait Anxiety Inventory (STAI), Whiteley Index (WI), Perceived Stress Scale (PSS-10), Maslach Burnout Inventory (MBI-HSS), Insomnia Severity Index (ISI), Epworth Sleepiness Scale (ESS), Giessen Complaints Questionnaire, Berner Bitterness Inventory (BVI), Brief Resilience Coping Scale, FEEL-E for emotional regulation, AVEM, and the MOS Social Support Survey. High levels of trait anxiety among caregivers were significantly associated with increased anxiety, stress, emotional exhaustion, depersonalization, insomnia, and feelings of resentment. Notably, maladaptive emotional regulation strategies were also prevalent. Intervention by the mobile palliative care team significantly reduced stress and insomnia, showing benefits across all levels of trait anxiety. Family caregivers with high trait anxiety face significant challenges in end-of-life palliative care settings, indicating a crucial need for early identification and comprehensive biopsychosocial support to mitigate adverse emotional and physical health outcomes.

Background The levels of support needs among people bereaved due to cancer are high; however, bereavement support services are underutilised. Reasons are unknown. We aimed to examine the relationship of caregiving burden and involvement of palliative care with the utilisation of formal bereavement support by family carers of people who died of cancer. Methods Secondary analysis of population-based mortality follow-back study (QUALYCARE) with bereaved relatives of adults who registered the death of an adult due to cancer and involved in caregiving. We ran a multivariate logistic regression to determine whether caregiving burden and palliative care involvement explain the utilisation of bereavement support. Results Out of 523 family members involved in caregiving (66% women, M age =59 (SD = 14), 43% spouses/partners, 41% adult children), 149 (28.8%) utilised formal bereavement support (73.8% women, M age =60 (SD = 14), 55% spouse/partner, 36% adult children). We found higher grief intensity (measured by the Texas Revised Inventory of Grief) than the reported population norms. Bivariate analysis confirmed the hypothesised associations. However, these were not retained in the multivariate model. Utilisation of bereavement support was associated with presence at the moment of death (OR 1.769, 95%CI = 1.044–2.994) and grief intensity (1.036, 95%CI = 1.015–1.058). Conclusions Subjective experiences such as grief intensity and being present at the moment of death are associated with the need for formal bereavement support, raising the issue of continuity of care for family carers into bereavement. Further research is warranted to better understand the complex relationships between caregiving, bereavement, and the role of palliative care in facilitating access to bereavement support.