A public health model approach to grief and bereavement support for Asian family caregivers of adult home palliative care patients – insights from practice implementation

Introduction Providing care for patients by family caregivers causes in several consequences known as “Caregiving Burden”, which affects the caregiver's health and the whole family process, considered in holistic healthcare/nursing. This study aimed to evaluate the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in a local area in Iran. Methods In this cross-sectional study, 190 family members of patients with cancer were studied through convenient sampling method. Data were collected using demographic data sheet enriched with Karnofsky Performance Status Scale and Katz Index of Independence in Activities of Daily Living (ADL), and Zarit Burden Inventory and Medical Outcomes Social Support Survey questionnaires. Results The results indicated intermediate performance status and moderate independence in ADL in patients. The mean score of caregiving burden was 43.95 ± 17.48 which indicates moderate to severe burden. The average social support in the caregivers was 60.25 ± 23.81% which shows above the average social support. Both performance status and dependence in ADL of patient had statistically significant effect on the caregiving burden in caregivers. Also a statistically significant negative relationship was observed between caregiving burden and social support in primary family caregivers of patients with cancer. Discussion Considering the increasing importance of primary care provided by families, developing strategies for providing caregiver's needs through family care in cancer nursing is essential. So supporting caregivers through family nursing in holistic healthcare by providing social support, can play a significant role in reducing caregiving burden in healthcare services considering the qualified holistic healthcare/nursing.

Background and Purpose: Family caregivers of patients with Alzheimer face many challenges when caring for them. The patients need not only the care of health professionals but also social support. Therefore, this study aimed to summarize the existing studies on social support for family caregivers of Alzheimer patients in a systematic review. Materials and Methods: In this review, the search was done in domestic (Magiran, SID) and foreign (Web of Science, Scopus, ProQuest, PubMed) databases as well as Google Scholar from 1990 to August 2021, according to the PRISMA (Preferred Reporting Items for Systematic Reviews) statement. The Cochrane and STROBE checklists were used to evaluate the quality of the articles. Results: Out of 709 articles on social support in family caregivers of Alzheimer patients, 7 entered the final list. The number of family caregivers participating in these studies ranged from 81 to 648. The mean age of caregivers in all studies was over 50 years. The studies emphasized the importance of improving social support in family caregivers of Alzheimer patients. Most study studies were conducted in America, which included all the interventional studies in this systematic review. In most studies, social support’s role in reducing family caregivers’ problems and promoting their satisfaction was important. Conclusion: Creating social networks and encouraging the use of these supports will be very helpful in reducing the problems of family caregivers of Alzheimer patients. More attention to health literacy is likely useful as a revelation of the need for social support in family caregivers of Alzheimer patients and the government.

Perceived health in caregivers is related to caregiver burden, psychological well-being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers' gender. A cross-sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers' mean age was 55.35years (SD=12.35), with 85.5% (n=218) being women and 14.5% (n=37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire-28; the Caregiver Strain Index, measuring caregiver overload; and the Duke-UNC-11 functional social support questionnaire. Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. This study suggests that perceived social support influences the emotional well-being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in-depth understanding of the variables determining these differences in family caregivers.

This is an update of the review published on 'Drug therapy for anxiety in adult palliative care patients' in Issue 1, 2004 of The Cochrane Library. Anxiety is common in palliative care patients. It can be a natural response to impending death, but it may represent a clinically significant issue in its own right. It may also result from pain, or other untreated or poorly managed symptoms. When anxiety is severe or distressing drug therapy may be considered in addition to supportive care. This review aimed to identify and evaluate randomised controlled trials examining the effectiveness of drug therapy for symptoms of anxiety in adult palliative care patients. We searched the following sources: CENTRAL (The Cochrane Library 2012, Issue 2), MEDLINE (1966 to 2012), EMBASE (1980 to 2012), CINAHL (1982 to 2012), PsycLit (1974 to 2000) and PsycInfo (1990 to 2012) for literature pertaining to this topic published in any language using a detailed search strategy. We sought prospective, randomised trials, with or without blinding, involving the use of drug therapy for the treatment of symptoms of anxiety in adult palliative care patients. Pharmacological agents included 5-HT3 receptor antagonists, anxiolytic agents, antiepileptic agents, antidepressive agents, antipsychotic agents, benzodiazepines, butyrophenones, phenothiazines, antihistamines, barbiturates, sedative hypnotics, antiepileptic drugs and beta-blockers. We identified and excluded six studies using the original search strategy, with a further two studies being identified and excluded for this 2012 update. We therefore identified a total of eight potential studies but none met the criteria for inclusion in this review. No data were available to enable an assessment to be made of the effectiveness of drugs to treat symptoms of anxiety in palliative care patients. There remains insufficient evidence to draw a conclusion about the effectiveness of drug therapy for symptoms of anxiety in adult palliative care patients. To date no studies have been found that meet the inclusion criteria for this review. Prospective controlled clinical trials are required in order to establish the benefits and harms of drug therapy for the treatment of anxiety in palliative care.

Caregivers of cancer patients experience significant challenges that affect their physical, psychological, and social well-being. This qualitative study aims to explore the specific challenges faced by caregivers of cancer patients during the COVID-19 pandemic. The present study is a conventional qualitative study based on the Graneheim method for content analysis. Data were collected through semi-structured individual interviews with 11 family caregivers of cancer patients in Isfahan, Iran. The challenges faced by family caregivers of cancer patients are classified into three main categories: 1) caregiver burnout which includes, "non-cooperation of the patient with the caregiver," "funding the costs of care and treatment," "lack of support for the family caregiver by the family and society," and "lack of knowledge and proper care skills." 2) Health threats to the family caregiver which include, "imbalance of self-care versus patient care," "disruption of a healthy lifestyle," and "occurrence of psychophysical symptoms caused by stress in caregivers." 3) Work-family-care conflicts which include: "conflict between patient care and family" and "conflict between patient care and work." This study provides additional insights into the personal and societal challenges faced by family caregivers of cancer patients during the COVID-19 pandemic. Based on our findings, health policymakers can take concrete steps to address these challenges and enhance the support for family caregivers, who play a crucial role in public health.

The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out.

Background:Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran.Materials and Methods:This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined.Results:The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers.Conclusions:Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary.

The aim of this study was to explore the moderated mediation mechanism of the relationships among family function, self-efficacy, care hours per day, closeness and benefit finding in family caregivers of patients with stroke in China. Benefit finding can provide a new means of resolving depression among family members caring for an ill loved one. However, current research has paid little attention to the benefit finding of family caregivers of stroke patients in China. A cross-sectional study. Three hundred fifty family caregivers of patients with stroke were recruited from community service centres and hospitals in Zhengzhou, China. The participants completed the family APGAR index, caregiver benefit finding scale and Chinese general self-efficacy scale during a study conducted in 2017. Descriptive analyses and a moderated mediation model were computed. Reporting adhered to the STROBE checklist. A total of 311 family caregivers completed this study. Closeness between family caregivers and patients with stroke moderated the relationship between family function and caregiver benefit finding. Self-efficacy partially mediated the relationship between family function and caregiver benefit finding; moreover, care hours per day moderated the mediation. This study shows important factors associated with benefit finding in family caregivers of patients with stroke. This indicates elements that could help improve benefit finding intervention programmes for family caregivers of patients with stroke. The findings in our study provide valuable information on benefit finding and indicate some interventions to improve the mental health of family caregivers of stroke patients.

This is an update of a Cochrane Review first published in 2004 (Issue 1) and previously updated in 2012 (Issue 10). Anxiety is common in palliative care patients. It can be a natural response to the complex uncertainty of having a life-limiting illness or impending death, but it may represent a clinically significant issue in its own right. To assess the effectiveness of drug therapy for treating symptoms of anxiety in adults with a progressive life-limiting illness who are thought to be in their last year of life. We ran the searches for this update to May 2016. We searched the CENTRAL, MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), PsychLIT (Silver Platter) and PsycINFO (Ovid). We searched seven trials registers and seven pharmaceutical industry trials registers. We handsearched the conference abstracts of the European Association of Palliative Care. Randomised controlled trials which examined the effect of drug therapy for the treatment of symptoms of anxiety in adult palliative care patients, that is, people with a known progressive life-limiting illness that is no longer responsive to curative treatment, including advanced heart, respiratory and neurological diseases (including dementia). Comparator treatments included placebo; another drug therapy or different dose schedule; or a non-drug intervention such as counselling, cognitive behaviour therapies or relaxation therapies. Two review authors independently screened titles and abstracts to identify potentially relevant papers for inclusion in the review. We sought full-text reports for all papers retained at this stage and two reviews authors independently assessed these for inclusion in the review. We planned to assess risk of bias and extract data including information on adverse events. We planned to assess the evidence using GRADE and to create a 'Summary of findings' table. In this update, we identified 707 potentially relevant papers and of these we sought the full-text reports of 10 papers. On examination of these full-text reports, we excluded eight and two are awaiting classification as we have insufficient information to make a decision. Thus, in this update, we found no studies which met our inclusion criteria. For the original review, we identified, and then excluded, the full-text reports of six potentially relevant studies. For the 2012 update, we sought, and excluded, two full-text reports. Thus, we found no studies that assessed the effectiveness of drugs to treat symptoms of anxiety in palliative care patients. There is a lack of evidence to draw a conclusion about the effectiveness of drug therapy for symptoms of anxiety in adult palliative care patients. To date, we have found no studies that meet the inclusion criteria for this review. We are awaiting further information for two studies which may be included in a future update. Randomised controlled trials which assess management of anxiety as a primary endpoint are required to establish the benefits and harms of drug therapy for the treatment of anxiety in palliative care.

ANALYSIS OF CAREGIVER RISK TO ASSESS NEEDS OF FAMILY CAREGIVERS FOR PATIENTS WITH DEMENTIA

A public health approach to palliative care has been developed in adult palliative care over several years. Despite the concepts of health and wellbeing, and palliation, dying and death appearing at first to be contradictory, a cogent argument has been made to understand palliative care in the context of promoting public health. However, the application to children’s palliative care has not been articulated in depth. The need for and development of children’s palliative care is well documented globally, with the public health model, and more recently the WHO conceptual model for palliative care development being key to ongoing development and progress in service delivery. Engaging communities to influence care provision is essential and important to ensure provision of appropriate and sustainable care. Positioning children’s palliative care within the public health perspective transforms care and service provision and centres around the child, their childhood and their carers, as part of the community and the wider population. Access to healthcare is vital, of course, but so is access to childhoods which guarantee children’s human rights and access to being a child living a childhood, whether that childhood is long, short or leads to an adulthood. Uncovering differing perspectives on the intersection of public health and children’s palliative care that varied between global regions, led to the development of eight statements. Our collaboration between colleagues in seven countries in different regions has allowed us to set out the context of the children’s palliative public health approach. This reflects a balancing of medical/nursing professionalised care and partnerships, co production and participation of communities. The public health approach to children’s palliative care is radical, it is transformational, and means changing how we do things in order to improve the lives of children with palliative care needs and their families around the world.

Family caregivers of patients with chronic mental disorders who are responsible for taking care of the patient face many problems that can endanger the psychosocial health of these people. This study was conducted to develop, implement, and evaluate a psychosocial health promotion program for family caregivers of patients with chronic mental disorders. This research is an exploratory sequential mixed-method study conducted using a qualitative-quantitative design. A qualitative study was conducted to explain the needs and psychosocial problems and the solution to improve the psychosocial health of family caregivers of patients with chronic mental disorders in two psychiatric care centers in Isfahan were conducted. Then the program was written based on Kern's programming development approach. In the quantitative stage, a part of the developed program was implemented as virtual group psychoeducation for 67 caregivers, and its impact on caregivers' burden of care was evaluated. The findings from the qualitative phase of the study led to the emergence of 3 main categories and the findings from the quantitative phase of the study indicated that the implementation of the compiled program causes a significant reduction in the burden of care in family caregivers of chronically mentally ill patients (p<0.05). The current program was prepared and developed using an evidence-based approach. Policymakers and members of the mental health team can take a valuable step toward reducing the care burden of family caregivers of chronic mental patients by using the content of the developed mental health promotion program.

Cancer, a leading cause of death worldwide and has serious impact on public health. More than one in three people will develop some form of cancer during their lifetime. The current study aimed to identify caregiver's burden and level of depression among family caregivers of patients with cancer. The study can help in creating baseline data on depression level and conducting future counseling program. A descriptive cross- sectional research design was applied to identify the level of depression among family caregivers of cancer patients in BPKMCH, Bharatpur, Chitwan, Nepal. To assess caregiver depression and its predictors, we used the Beck Depression Inventory-II (BDI-II). Fifty family caregivers of cancer patients were selected by using non- probability purposive sampling technique and a semi structure interview schedule were used to collect the data. The study finding revealed 66% had feeling of sadness, 56% had feeling of something bad is going to happen in future, 52% had feeling of failure in life, 84% had loss of pleasure in life, 20% had guilty feeling in life, 28% had felling of punished by someone, 58% had self-dislike, 24% had self-criticize, 28% had suicidal thought, 48% had feeling of crying, 66% had restless, 62% had loss of interest in daily activities, 58% had difficulty in decision making, 56 % had feeling of life is worthless,78% had loss of energy, 58% had difficulty in falling asleep,44% had felt irritated with others, 58% had change in appetite, 70 % had difficulty in concentration,70% had feeling of fatigue, 18% had loss of interest in sex. Overall level of depression among family caregivers of cancer patients, 34% had severe level of depression, 32% had moderate depression, 6% had mild depression and 28% had considered minimal range of depression. Though most of respondents did not know about the stage of cancer in their patients, they were still going through the depression. This study concluded that mostly moderate and severe level of depression among family caregivers and care burden was its best predictor. Interventions aimed at reducing the psychiatric effects of cancer should focus not only on the patient but also on the caregiver.

This study aimed to map the actual care pathways for pediatric and adult palliative care (PC) patients at a hospital in the Region of Murcia (Spain) utilizing Process Mining (PM) techniques. The goal was to identify inefficiencies and areas for improvement in providing comprehensive and coordinated care to enhance patient outcomes. A retrospective review of anonymized clinical records was conducted, covering data from 2002 to 2021 for adult patients and from 2001 to 2021 for pediatric patients. The final dataset for adults comprised records from 85 patients and 2,696 episodes, and, for pediatric patients, the dataset included 57 individuals with 1,912 episodes. PM techniques (concretely, PMApp) facilitated the visualization and evaluation of actual care pathways, compared to theoretical models, highlighting bottlenecks and variabilities. The analysis revealed distinct care pathways for adult and pediatric patients. Pediatric pathways showed inconsistencies with theoretical models due to variability in diseases and care needs, while adult pathways aligned better with expectations. Key inefficiencies included delays in shifting to home care and multiple visits to the hospital Emergency Department before referral to specialized teams. Simplified process models provided clearer insights into frequent care pathways and highlighted critical transition points, supporting optimization strategies. The findings underscore the utility of PM in enhancing care pathway transparency, identifying inefficiencies, and supporting data-driven process redesign. The study advocates for updating theoretical models and adopting structured data collection to reduce variability and improve PC delivery. These measures are critical for achieving consistent, patient-centered care across diverse healthcare settings.

Some critics of the Reno model appear to have misinterpreted its fundamental tenets by expressing the belief that the model is incompatible with the public health model. Both the public health and Reno models attempt to influence policies and strategies designed to promote responsible gambling and the reduction of gambling-related harms. In this article, we describe four principles that characterize a public health perspective focusing on gambling and discuss how the Reno model complements the public health approach. Both models encompass principles and guidelines that emphasize the shared responsibilities across multiple stakeholders including governments, industry, community welfare, and individuals. The Reno model represents a tactical framework for responsible gambling complementing the broader population public health approach, each model consistent in attempting to prevent the incidence, reduce the prevalence, and minimize gambling disorders and related harms. Paradoxically, although stakeholders are in agreement about the general principles and objectives, differences are evident in the manner different interventions are chosen and applied in efforts to achieve common goals.