Caring for children with medical complexity at home: An integrative review.

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.

Implementation and impact of the World Health Organization integrated care for older people (ICOPE) program in China: a randomised controlled trial.

BACKGROUND: Fragmentation of services increases health and social care burden as people live longer with higher prevalence of diseases, frailty and dependency. Local evidence for implementing person-centred integrated care is urgently needed to advance practice and policies to achieve healthy ageing. OBJECTIVE: To test the feasibility and impact of World Health Organization's (WHO) Integrated Care for Older People (ICOPE) approach in China. DESIGN: A randomised controlled trial examining the feasibility of implementing ICOPE approach, evaluating its impact on health outcomes and health resource utilisation. SETTING: Primary care setting in urban and suburban communities of Chaoyang District, Beijing, China. SUBJECTS: Community-dwelling older adults screened as at-risk of functional declines and randomised into intervention (537) and control (1611) groups between September 2020 and February 2021. METHODS: A 6-month intervention program following WHO's ICOPE care pathways implemented by integrated care managers compared to standard available care. RESULTS: After 1 to 1 propensity score matching, participants in intervention and control groups (totally 938) had comparable baseline characteristics, demonstrated feasibility of implementing ICOPE with satisfaction by participants (97-99%) and providers (92-93%). All outcomes showed improvements after a 6-month intervention, while statistically significant least-squares mean differences (control-intervention) in vitality (Mini-Nutritional Assessment Short Form to measure vitality, -0.21, 95% CI, -0.40-0.02), mobility (Short Physical Performance Battery to measure mobility, -0.29, 95% CI, -0.44-0.14) and psychological health (Geriatric Depression Scale five items to measure psychological health, 0.09, 95% CI, 0.03-0.14) were observed (P < 0.05). CONCLUSIONS: It is feasible to localise and implement WHO's ICOPE approach in regions with fragmented resources such as China. Preliminary evidence supports its acceptance among key stakeholders and impact on health outcomes.

A qualitative study on the caregiver burden experience in home reflux enema management of infants with congenital megacolon.

OBJECTIVE: This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions. METHODS: A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi's 7-step analysis method, leading to the identification of key themes. RESULTS: The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support. CONCLUSIONS: This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung's disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate "Internet + collaborative nursing" to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities.

Caregiver burden and mental health: Parent perspectives when raising a child with developmental coordination disorder.

BACKGROUND: Children with Developmental Coordination Disorder (DCD) are at high risk for mental health disorders, stemming from challenges participating in motor activities. Parents of children with DCD report increased caregiver burden exacerbated by insufficient support and services for their child. A paucity of literature exists on parent and child mental health associated with a DCD diagnosis. AIMS: To explore parent perceptions of their child's mental health, and the impact of DCD on family and parental mental health. METHODS AND PROCEDURES: Implementation of a secondary analysis using the impACT for DCD, a cross-sectional online survey of parents of children with self-reported suspected or confirmed diagnosis of DCD living in British Columbia, Canada. Data analysis included descriptive and inferential statistics and content analysis. OUTCOMES AND RESULTS: Of the 237 participants, more than one third of parents (36%) rated their own mental health to be fair or poor, and the majority (90%) expressed concern for their child's mental health. Themes emerged on the impact of DCD on child, parent, and family, influenced by access to resources. CONCLUSIONS AND IMPLICATIONS: Standard of care for DCD needs to include services and supports that address caregiver burden and mental health of children with DCD and their families. WHAT THIS PAPER ADDS: This paper explores parent perceptions of their child(ren)'s and their own mental health when raising a child with DCD in British Columbia (BC). In BC, there is a lack of research on the mental health challenges families face when their child has a diagnosis of DCD. Amongst health care providers, there tends to be a focus on DCD as a motor disorder, with limited understanding and acknowledgement of the mental health component for children and their families. Thus, this study will inform health-care providers, parents, educators, and policy makers on parent-identified mental health needs and the essential services and supports. Unique to this study was the inclusion of a descriptive and exploratory content analysis, providing a holistic understanding of parents' perceptions regarding the impact of DCD on their children and themselves. Our results revealed that parents perceive significant inter-connected impacts of DCD on the child, parents, and family, leading to poor mental health for parents and their child(ren). Limited access to resources and supports results in a negative trajectory for family mental health and well-being. Study results indicate the critical importance of addressing mental health, in addition to motor challenges. Healthcare providers need to adopt a family-centred approach to address the physical and psychosocial impairments associated with DCD, ensuring positive outcomes for children and their families.

The Effect of Spiritual Orientations and Religious Attitudes on Coping with the Difficulties Encountered by Family Caregivers of People with Parkinson's Disease in Türkiye.

This study aimed to determine the effect of spiritual orientations and religious attitudes on coping with the difficulties of family caregivers of people with Parkinson's disease. This descriptive and cross-sectional study was conducted with 113 family caregivers of people with Parkinson's disease who came to be examined in the Neurology outpatient clinic of a Training and Research Hospital in Türkiye between July and September 2023. Data were obtained using a Patient and Family Caregivers Information Form, the Spiritual Orientation Scale (SOS), and the Ok-Religious Attitude Scale (Islam) (ORASI). The mean age of the family caregivers was 55.6 ± 14.2, the SOS total mean score was 89.1 ± 16.2, and the ORASI total score mean was 34.4 ± 4.0. It was determined that 61.1% of the caregivers experienced changes psychologically, 57.5% in their social life, 58.4% in their home life, and 57.5% in their family relationships. A statistically significant relationship was detected between the ORASI of family caregivers who experienced financial and physical distress and the SOS of those who experienced physical and psychological distress (p < 0.05). It was determined that family caregivers of people with Parkinson's disease were affected in many areas physically, socially, and psychologically and that their spiritual orientation and religious attitudes were effective in coping with the problems experienced. Training and support programs are recommended for nurses to develop positive religious attitudes, increase their spiritual orientation and reduce the care burden, taking into account the beliefs and values of family caregivers.

Caregiver burden in Parkinson's disease: a mixed-methods study.

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany.

BACKGROUND: This study measured sleep quality among caregivers of patients with Dravet syndrome (DS) and assessed the impacts of mental health problems and caregiver burden on sleep quality. METHODS: This multicenter, cross-sectional study of patients with DS and their caregivers throughout Germany consisted of a questionnaire and a prospective 4-week diary querying disease characteristics, demographic data, living conditions, nocturnal supervision, and caregivers' work situations. Sleep quality was assessed using the Pittsburgh Sleeping Quality Index (PSQI). The Hospital Anxiety and Depression Scale (HADS) and the Burden Scale for Family Caregivers (BSFC) were used to measure anxiety, symptoms of depression, and caregiver burden. RESULTS: Our analysis included 108 questionnaires and 82 four-week diaries. Patients with DS were 49.1% male (n = 53), with a mean age of 13.5 ± 10.0 years. Caregivers were 92.6% (n = 100) female, with a mean age of 44.7 ± 10.6 years. The overall mean PSQI score was 8.7 ± 3.5, with 76.9% of participants (n = 83) scoring 6 or higher, indicating abnormal sleep quality. The HADS for anxiety and depression had overall mean scores of 9.3 ± 4.3 and 7.9 ± 3.7, respectively; 61.8% and 50.9% of participants scored above the cutoff value of 8 for anxiety and depression, respectively. Statistical analyses revealed caregiver anxiety levels and patients' sleep disturbances as major factors influencing PSQI scores. The overall mean BSFC score of 41.7 ± 11.7 indicates a moderate burden, with 45.3% of caregivers scoring 42 or higher. CONCLUSIONS: Sleep quality is severely affected among caregivers of patients with DS, correlating with anxiety, comorbidities, and patients' sleep disturbances. A holistic therapeutic approach should be implemented for patients with DS and their caregivers, focusing on the sleep quality and mental health of caregivers. TRIAL REGISTRATION: German Clinical Trials Register (DRKS), DRKS00016967. Registered 27 May 2019, http://www.drks.de/DRKS00016967.

Relationship of Psychological Flexibility and Mindfulness to Caregiver Burden, and Depressive and Anxiety Symptoms in Caregivers of People with Dementia.

Caregivers of People with dementia (PwD) commonly experience burdens and other mental health issues, e.g., depression and anxiety. At present, there are limited studies that examine the relationships between caregiver psychological factors and caregiver burden, and depressive and anxiety symptoms. Therefore, this study's objectives were to examine the relationships between psychological flexibility and mindfulness in caregivers of PwD, and to determine the predictors of these three outcomes. This was a cross-sectional study conducted in the geriatric psychiatry clinic of Kuala Lumpur Hospital, Malaysia, and the sample (n = 82) was recruited via a universal sampling method over three months. The participants completed a questionnaire that consisted of the sociodemographics of the PwD and caregivers, illness characteristics of the PwD, Acceptance and Action Questionnaire-II (AAQ-II), Mindful Attention Awareness Scale (MAAS), Zarit Burden Interview Scale (ZBI), Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7). The results show that despite significant relationships between psychological flexibility and mindfulness and lower levels of caregiver burden, and depressive and anxiety symptoms (p < 0.01), only psychological inflexibility (p < 0.01) remained as a significant predictor of the three outcomes. Therefore, in conclusion, intervention programs that target the awareness of the caregiver's psychological inflexibility should be implemented to alleviate these adverse outcomes in dementia caregivers.

How patients with dementia influence caregiver burden using the Dementia Assessment Sheet for Community-based Integrated Care System-21 items (DASC-21) and Zarit Caregiver Burden Interview (ZBI).

BACKGROUND: Dementia is a disease that is frequently associated with significant caregiving burden. The present study was conducted on patients with dementia in order to investigate the causes of caregiver burden using the Dementia Assessment Sheet for Community-based Integrated Care System-21 items (DASC-21) and Zarit Caregiver Burden Interview (ZBI). METHODS: The study subjects consisted of 206 elderly patients (mean age: 80.9 ± 5.9 years) with dementia in an outpatient clinic. Current age, gender, type of dementia, Mini-Mental State Examination, Hasegawa Dementia Scale-Revised, Clinical Dementia Rating (CDR), Geriatric Depression Scale (GDS) and the DASC-21 were investigated. Caregiver burden was assessed by using the ZBI. Behavioural and Psychological Symptom of Dementia (BPSD) were evaluated by using the Neuropsychiatric Inventory (NPI). Simple regression analysis for the ZBI was performed with respective risk factors as independent variables. Thereafter, multiple regression analysis was performed. RESULTS: The mean ZBI score was 28.0 ± 18.1, whereas mean DASC-21 score was 44.4 ± 13.2. Simple regression analysis for the ZBI was performed with respective risk factors as independent variables. The DASC-21 (P < 0.001), CDR (P < 0.001), NPI (P < 0.001), and GDS (P = 0.034) were significantly associated with the ZBI. For each item of the DASC-21, Memory (P < 0.001), Orientation (P < 0.001), Solving issues/Common sense (P < 0.001), Instrumental activities of daily living (IADL) outside the home (P < 0.001), IADL inside the home (P < 0.001), Physical ADL① (P < 0.001) and Physical ADL② (P = 0.014) were also significantly associated with the ZBI. To find the independent association of the ZBI, multiple regression analysis was performed. The results showed that DASC-21 (P < 0.001) and NPI (P < 0.001) had significant correlation. For each item of the DASC-21, Memory (P = 0.014) and Solving issues/Common sense (P < 0.001) were also shown to have significant correlation. CONCLUSIONS: Both BPSD, cognition and IADL have affected caregiver burden. The DASC-21 is useful for determining the causes of caregiver burden of dementia patients.

The management of neovascular age-related macular degeneration: A systematic literature review of patient-reported outcomes, patient mental health and caregiver burden.

PURPOSE: The aim of this systematic literature review was to describe patient-reported outcomes, mental health and caregiver burden in patients with neovascular age-related macular degeneration (nAMD) treated with anti-vascular endothelial growth factor (VEGF) agents in routine clinical practice. METHODS: Electronic searches were conducted in Embase and MEDLINE according to pre-defined criteria. RESULTS: Of 856 records identified, 63 met inclusion criteria. Depression or depressive symptoms were reported in up to 42% of patients with nAMD. Of 25/63 (40%) studies evaluating quality of life (QoL) and using various tools, eight studies reported composite National Eye Institute Visual Functioning Questionnaire scores following anti-VEGF treatment. Of these, seven reported a statistically significant improvement at the earliest time point measured (Month 3-12) and approximately 50% reported sustained QoL benefits at 12 months. In studies comparing the attributed or different regimens, the most important factor from the patient's perspective was the likelihood that a particular regimen would maintain vision. There was a preference towards treat and extend, which was associated with a perceived reduction in patient and caregiver burden, compared to fixed dosing. CONCLUSIONS: A coordinated holistic approach to patient care is key to optimizing patient well-being as well as visual outcomes. Further research regarding the patient-reported impact of nAMD management outside the trial setting (particularly international longitudinal studies) is warranted. Standardization of QoL studies would assist in establishing whether sustained QoL improvement, rather than prevention of QoL decline, should be a realistic expectation of treatment of nAMD in the longer term.

Effect of Benson's relaxation technique on caregiver burden in caregivers of hemodialysis patients. A Randomized Controlled Trial / Efecto de la técnica de relajación de Benson en la carga del cuidador de pacientes en hemodiálisis. Un entudio controlado aleatorizado / Efeito da técnica de relaxamento de Benson na sobrecarga do cuidador em pacientes em hemodiálise. Um estudo controlado randomizado

Methods. This is a randomized controlled trial study on 52 caregivers of hemodialysis patients referred an universitary hospital at Jahrom. The caregivers were randomly divided into intervention and control groups. In the intervention group, Benson's relaxation was performed twice a day for 15 minutes each time, and continued for one month. Data collection tools included demographic information questionnaire and standard Zarit Burden Interview questionnaire which was completed by all participants before the intervention and one month after it. Results. After the intervention, the mean caregiver burden of hemodialysis patients in the intervention group decreased significantly compared to the control group (p<0.001). The results of paired t-test showed that in the intervention group, the mean scores of caregiver burden after the intervention (14.46± 10.91) was significantly lower than before the intervention (38.33±16.94) (p=0.001). Conclusion. Benson's relaxation method can reduce caregiver burden in caregivers of hemodialysis patients.

Objetivo. Investigar el efecto de la técnica de relajación de Benson sobre la carga de los cuidadores de pacientes en hemodiálisis. Métodos. Estudio de intervención realizado con la participación de 52 cuidadores de pacientes en hemodiálisis remitidos a un hospital universitario de Jahrom (Iran). Los cuidadores fueron divididos aleatoriamente en los grupos de intervención y de control. En el grupo de intervención, se realizó la técnica de relajación de Benson dos veces al día durante 15 minutos cada vez, y se continuó durante un mes. Las herramientas de recogida de datos incluían un cuestionario de información demográfica y la entrevista de percepción de carga del cuidador "Zarit Burden Interview" que fue completado por todas participantes antes de la intervención y un mes después de terminada la misma. Resultados. Después de la intervención, la carga media de los cuidadores de pacientes en hemodiálisis en el grupo de intervención disminuyó significativamente en comparación con el grupo de control (p<0.001). Los resultados de la prueba t pareada mostraron que en el grupo de intervención, las puntuaciones medias de la carga del cuidador después de la intervención (14.46±10.91) fueron significativamente menores que antes de la intervención (38.33±16.94) (p=0.001). Conclusión. El método de relajación de Benson puede reducir la carga de los cuidadores de pacientes en hemodiálisis.

Objetivo. Investigar o efeito do relaxamento de Benson na sobrecarga do cuidador em cuidadores de pacientes em hemodiálise na cidade de Jahrom. Métodos. Este é um estudo controlado randomizado envolvendo 52 cuidadores de pacientes em hemodiálise encaminhados a um hospital afiliado à Jahrom University of Medical Sciences. Os cuidadores foram divididos aleatoriamente em grupos intervenção (n=24) e controle (n=24). No grupo intervenção, os cuidadores realizaram o relaxamento de Benson duas vezes ao dia por 15 minutos cada, e foi continuado por um mês. A coleta de informações incluiu um questionário de informações demográficas e o questionário padrão Zarit que foi preenchido por todos os participantes antes da intervenção e um mês após o seu preenchimento. Resultado S. A maioria dos cuidadores nos grupos intervenção (79.2%) e controle (64.3%) eram mulheres. Após a intervenção, a sobrecarga média dos cuidadores de pacientes em hemodiálise no grupo intervenção diminuiu significativamente em relação ao grupo controle (p<0.001). Os resultados do teste t pareado mostraram que, apenas no grupo intervenção, os escores médios de sobrecarga do cuidador após a intervenção (14.46 ±10.1) foram significativamente menores do que antes da intervenção (38.33) ±16.94) com p <0.001. Conclusão. O método de relaxamento de Benson demonstrou ser eficaz na redução da sobrecarga dos cuidadores de pacientes em hemodiálise.

Untangling the role of social relationships in the association between caregiver burden and caregiver health: an observational study exploring three coping models of the stress process paradigm.

BACKGROUND: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models. METHODS: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health. RESULTS: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health. CONCLUSION: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden.

Nursing support for symptoms in patients with cancer and caregiver burdens: a scoping review protocol.

INTRODUCTION: Terminally ill patients with cancer experience a variety of symptoms, and their families experience certain caregiver burdens. Most studies on this topic have focused on the symptoms experienced by patients with cancer. There is little established evidence to show how nursing support affects these symptoms and burdens. Nurses provide support by extrapolating their clinical experience, practical knowledge and insights gained from the treatment phase of patients with cancer, regardless of the existence or degree of evidence. This study presents a scoping review protocol with the aim of categorising the feasibility of nursing support from the initial to the terminal phases in the trajectory of cancer care. METHOD AND ANALYSIS: This review will be guided by Arksey and O'Malley's five-stage scoping review framework and Levac's extension. Our research project team will focus on the pain, dyspnoea, nausea and vomiting, constipation, delirium, fatigue and skin disorders experienced by patients with cancer as well as the burdens experienced by caregivers of such patients. All available published articles from database inception to 31 January 2022 will be systematically searched using the following electrical databases: PubMed, CINAHL, CENTRAL in the Cochrane Library and Ichushi-Web of the Japan Medical Abstract Society databases. In addition, we will assess relevant studies from the reference list and manually search each key journal. The formula creation phase of the literature search involves working with a librarian to identify relevant keywords. At least two reviewers will independently screen and review articles and extract data using a data chart form. Results will be mapped according to study design and analysed for adaptation in the field of terminal cancer. ETHICS AND DISSEMINATION: This review does not require ethical approval as it is a secondary analysis of pre-existing, published data. The findings will be disseminated through peer-reviewed publications and conference presentations.

Cardiorenal disease in the United States: Future health care burden and potential impact of novel therapies.

BACKGROUND: Currently, concerted efforts to identify, prevent, and treat type 2 diabetes mellitus (T2DM), heart failure (HF), and chronic kidney disease (CKD) comorbidities are lacking at the institutional level, with emphasis placed on individual specialties. An integrated approach to tackle T2DM, HF, and CKD within the context of cardiorenal disease has the potential to improve outcomes and reduce costs at the system level. OBJECTIVE: To synthesize published evidence describing the burden of those diagnosed with T2DM, HF, and CKD in the United States as individual discrete chronic conditions, in order to evaluate the potential economic impact of novel therapies in this population. METHODS: We developed a compartmental Markov model with an annual time cycle to model an evolving prevalent US patient population with T2DM, HF, or CKD over the period 2021-2030 (either in isolation or combined). The model was used to explore the potential impact of novel therapies such as sodium-glucose cotransporter 2 inhibitors on future disease burden, by extrapolating the results of relevant clinical trials to representative patient populations. RESULTS: The model estimates that total prevalence across all disease states will have increased by 28% in 2030. Cumulatively, the direct health care cost of cardiorenal disease between 2021 and 2030 is estimated at $4.8 trillion. However, treatment with dapagliflozin has the potential to reduce disease prevalence by 8.0% and estimated cumulative service delivery costs by 3.6% by 2030. CONCLUSIONS: Considering a holistic approach when managing patients with cardiorenal disease offers an opportunity to reduce the disease burden over the next 10 years in the US population. DISCLOSURES: This work was funded by AstraZeneca, which provided support for data analysis. McEwan, Morgan, and Boyce are employees of Health Economics and Outcomes Research Ltd., Cardiff, UK, which received fees from AstraZeneca in relation to this study. Song and Huang are employees of AstraZeneca. Bergenheim is an employee of AstraZeneca and holds AstraZeneca stocks/stock options. Green has no conflicts of interest to declare.

Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia.

OBJECTIVES: To realize patients' preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions. DESIGN: A prospective cohort study. SETTING AND PARTICIPANTS: Patient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included. METHODS: Independent variables included sociodemographic data, patients' clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression. RESULTS: From October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (ß = -0.22, 95% CI -0.38, -0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (ß = -9.04, 95% CI -14.86, -3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers' ZBI scores increased with patients' neuropsychiatric symptom severity (ß = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life. CONCLUSIONS AND IMPLICATIONS: Younger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically.

Effect of Benson's relaxation technique on caregiver burden in caregivers of hemodialysis patients. A Randomized Controlled Trial.

METHODS: This is a randomized controlled trial study on 52 caregivers of hemodialysis patients referred an universitary hospital at Jahrom. The caregivers were randomly divided into intervention and control groups. In the intervention group, Benson's relaxation was performed twice a day for 15 minutes each time, and continued for one month. Data collection tools included demographic information questionnaire and standard Zarit Burden Interview questionnaire which was completed by all participants before the intervention and one month after it. RESULTS: After the intervention, the mean caregiver burden of hemodialysis patients in the intervention group decreased significantly compared to the control group (p<0.001). The results of paired t-test showed that in the intervention group, the mean scores of caregiver burden after the intervention (14.46± 10.91) was significantly lower than before the intervention (38.33±16.94) (p=0.001). CONCLUSIONS: Benson's relaxation method can reduce caregiver burden in caregivers of hemodialysis patients.

A Comparison of Caregiver Burden of Patients with Advanced Cancer in Different Palliative Cancer Care Settings.

Background: Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it. Objectives: We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU). Secondary aims were to compare other caregiver burden dimensions, quality of life, and any association of caregiver subjective stress burden to various patient and caregiver factors. Setting and Design: Eligible patients and their informal caregivers in the SCC or PCU at a comprehensive cancer center in the USA were approached and enrolled. The Montgomery-Borgatta Caregiver Burden Scale and the Short-form 36 were used to measure burden and quality of life. Multivariate general linear regression was employed to evaluate the effect of covariates on subjective stress burden. Results: Ninety-eight dyads in the SCC and 74 dyads in the PCU were enrolled. PCU caregivers reported worse subjective stress burden (p = 0.0029) and mental health (p = 0.0299). Multivariate analysis showed correlations between subjective stress burden and caregivers' objective burden (p = 0.0136), subjective demand burden (p ≤ 0.0001), mental health (p = 0.0074), duration of caregiving (p = 0.0680), education (p = 0.0192) and with patients' anxiety (p = 0.0003) and current/recent cancer treatment (p = 0.0579). Conclusion: PCU caregivers demonstrated worse emotional burden and mental health than those in the SCC. More research is needed to tailor interventions for various caregiver burden dimensions. NCI Clinical Trial Registration Number ID: NCI-2019-01197.

Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia: One-Year Partner Outcomes.

BACKGROUND/OBJECTIVE: Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood. DESIGN/SETTING: Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program. PARTICIPANTS: Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program. INTERVENTION: Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks. MEASUREMENTS: A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up. RESULTS: At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively). CONCLUSION: Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI.