Burden of treatment for chronic illness: a concept analysis and review of the literature

Context Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated. Objective Using Rodgers' (1989, Journal of Advanced Nursing, 14, 330–335) method of concept analysis, this review describes the ways in which treatment burden has been conceptualized to define the concept and to develop a framework for understanding its attributes, antecedents and consequences. Methods Leading databases were searched electronically between the years 2002 and 2011. To ensure the review focused on actual observations of the concept of interest, articles that did not measure treatment burden (either qualitatively or quantitatively) were excluded. An inductive approach was used to identify themes related to the concept of treatment burden. Main results Thirty articles, identified from 1557 abstracts, were included in the review. The attributes of treatment burden include burden as a dynamic process, as a multidimensional concept, and comprising of both subjective and objective elements. Prominent predisposing factors (antecedents) include the person's age and gender, their family circumstances, possible comorbidity, high use of medications, characteristics of treatment and their relationship with their health-care provider. The most dominant consequences are poor health and well-being, non-adherence to treatment, ineffective resource use and burden on significant others. Furthermore, many of these consequences can also become antecedents, reflecting the cyclic and dynamic nature of treatment burden. Conclusion The findings underscore the need for researchers and health-care professionals to engage in collaborative discussions and make cooperative efforts to help alleviate treatment burden and tailor treatment regimens to the realities of people's daily lives

Caregiver Burden and Perceived Health Competence when Caring for Family Members Diagnosed with Alzheimer’s Disease and Related Dementia

Purpose: To identify if there is a relationship between perceived health competence and burden of care of informal caregivers of family members with Alzheimer’s Disease and Related Dementia (ADRD). Methods: Informal caregivers 18 years and older who received services from the Alzheimer’s Resource of Alaska were invited to complete a survey. Conclusion: Findings indicate that there was a significant negative correlation between Perceived Health Competence and Burden of Care (N = 64, r = -.54, p <.001). Furthermore, the three subscales of the Modified Montgomery-Borgatta Caregiver Burden Scale: Relationship burden (r = -.29, p = .021), Objective burden (r = -.65, p = < .001) and Stress burden (r = -.41, p = .001) indicated that different types of burden affect informal caregivers’ health competence. Implications for practice: Based on the findings of this study, it is important to ensure that informal caregivers do have time for themselves as well as taking care of their own health needs. Nurse Practitioners can play an important role in early detection and prevention, with periodic screening to help identify current needs and to ensure optimal health for these informal caregivers

The objective burden in partners of heart failure patients; development and initial validation of the Dutch objective burden inventory

BACKGROUND: Measures on objective caregiver burden in partners of Heart Failure patients are hardly available and never include HF specific aspects. AIM: The main objective of our study was to develop an inventory that assesses the objective caregiver burden of partners of HF patients, including the full range of potential care giving demands. METHODS: To develop the inventory, six domains of caregiving demands were identified. Items for the domains were generated from the literature, expert opinion and existing scales. The original 50-items self-report inventory was administered to 321 partners of HF patients. Demographic data of HF partners were collected by questionnaire. Clinical data of the HF patients were collected by chart review. RESULTS: Component analysis led to exclusion of 12 original items and to a meaningful four-factor solution with a total explained variance of 43%. The components reflected four different kinds of care giving tasks; personal care, emotional, motivational and practical (treatment related) support. They demonstrated good internal consistency and initial validity was supported by a pattern of meaningful associations with external variables. CONCLUSION: The Objective Burden Inventory is a promising inventory to assess objective care giving tasks performed by HF partners, including emotional and motivational support. It provides information on the caregiver situation that may help to develop effective intervention

Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

Background: Family caregiver is the most important person who cares for patient with schizophrenia. However when care is provided for long time, he/she may experiences the burden.Purpose: The purpose was to review concept and factors related to burden on family caregivers caring for patients with schizophrenia.Method: A literatures were searched from databases: Pubmed, CINAHL, and Science Direct. Key words used to retrieve literature include caregiver burden and schizophrenia. Searching was limited in English language, full text, and the year of publication from 2000 to 2009 was used.Results: Twenty two studies were reviewed in this paper. The result showed that the caregivers caring for patients with schizophrenia experience burden. Burden was defined as a negative impact of caring for the impaired person experienced by caregiver on their activity (objective burden) or feeling (subjective burden) that involves emotional, physical health, social life, and financial status. Factors related to burden on family caregiver were grouped into: 1) caregiver‟s factors included age, gender, educational level, income, health status, and spent time per day, knowledge of schizophrenia, culture, and coping; 2) patient‟s factors included age, clinical symptoms, and disability in daily life; 3) environmental factors included mental health service and social support.Conclusion: Definition of burden have quite same meaning and mostly factors focus on the patient‟s symptoms, demographic factors of caregiver, and time spent per day. Most of studies cannot be generalized due to small sample used in the study and that too conducted in western countries. For further research, the correlation between burden and resources of family caregiver should be investigated particularly in eastern country

The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia

Copyright © 2016 John Wiley & Sons, Ltd. Objective: The objective of the study is to examine caregiver factors as predictors of BPSD-related distress and their potential mechanisms. Method: Informal caregivers of people with dementia (n = 157) recruited from 28 community mental health teams in six NHS Trusts across England completed questionnaires regarding psychosocial factors (relationship quality, competence, guilt, health-related quality of life in the caregiver and person with dementia, reactivity to behavioural and psychological symptoms in dementia [BPSD] and burden) and frequency of BPSD. Analyses of BPSD-related distress include hierarchical multiple regression, mediation, moderation and path analysis. Results: Caregiver psychosocial factors explained 56% of the variance in BPSD-related distress. After controlling for these factors, frequency of BPSD was not a significant predictor of BPSD-related distress. Caregiver reactivity to BPSD, burden, competence and relationship quality directly influenced BPSD-related distress. Guilt influenced distress indirectly via competence, burden and reactivity to BPSD. The final model accounted for 41% of the variance in BPSD-related distress and achieved a good fit to the data (χ 2 = 23.920, df = 19, p = 0.199). Conclusions: Caregiver psychosocial factors including sense of competence, guilt, burden and reactivity to BPSD contribute to BPSD-related distress. Tailored interventions for managing behaviour problems in family settings could focus on these factors associated with BPSD-related distress to minimise distress in families. Copyright © 2016 John Wiley & Sons, Ltd

The UN in the lab

We consider two alternatives to inaction for governments combating terrorism, which we term Defense and Prevention. Defense consists of investing in resources that reduce the impact of an attack, and generates a negative externality to other governments, making their countries a more attractive objective for terrorists. In contrast, Prevention, which consists of investing in resources that reduce the ability of the terrorist organization to mount an attack, creates a positive externality by reducing the overall threat of terrorism for all. This interaction is captured using a simple 3×3 “Nested Prisoner’s Dilemma” game, with a single Nash equilibrium where both countries choose Defense. Due to the structure of this interaction, countries can benefit from coordination of policy choices, and international institutions (such as the UN) can be utilized to facilitate coordination by implementing agreements to share the burden of Prevention. We introduce an institution that implements a burden-sharing policy for Prevention, and investigate experimentally whether subjects coordinate on a cooperative strategy more frequently under different levels of cost sharing. In all treatments, burden sharing leaves the Prisoner’s Dilemma structure and Nash equilibrium of the game unchanged. We compare three levels of burden sharing to a baseline in a between-subjects design, and find that burden sharing generates a non-linear effect on the choice of the efficient Prevention strategy and overall performance. Only an institution supporting a high level of mandatory burden sharing generates a significant improvement in the use of the Prevention strategy

The well-being of carers of older Aboriginal people living in the Kimberley region of remote Western Australia: Empowerment, depression, and carer burden

Objective: To describe demographic features and well-being of carers of Aboriginal Australians aged ≥45 years in remote Western Australia. Method: Carer burden, empowerment, and depression were assessed in 124 Aboriginal carers in four remote Aboriginal communities. Results: Carers were aged 38.8 ± 15.0 years, 73.4% were female, and 75.8% were children or grandchildren of the person cared for. The mean Zarit-6 score was 3.7 ± 3.6. Attending high school (odds ratio [OR] = 0.3; 95% confidence interval [CI] = [0.1, 0.7]) and feeling empowered (OR = 0.2; 95% CI = [0.1, 0.8]) were inversely associated with carer burden; female carers were less likely to feel empowered (OR = 0.4; 95% CI = [0.2, 0.9]); and empowerment was inversely associated with depression (OR = 0.3; 95% CI = [0.1, 0.7]). Discussion: Aboriginal carers in remote communities are relatively young and most are children or grandchildren. Carer burden was lower than anticipated. However, existing tools may not adequately measure Aboriginal perspectives. Education and empowerment are key factors which support programs must consider

Emerging cancer incidence, mortality, hospitalisation and associated burden among Australian cancer patients, 1982 - 2014: an incidence-based approach in terms of trends, determinants and inequality

Objective Cancer is a leading killer worldwide, including Australia. Cancer diagnosis leads to a substantial burden on the individual, their family and society. The main aim of this study is to understand the trends, determinants and inequalities associated with cancer incidence, hospitalisation, mortality and its burden over the period 1982 to 2014 in Australia. Settings The study was conducted in Australia. Study design An incidence-based study design was used. Methods Data came from the publicly accessible Australian Institute of Health and Welfare database. This contained 2 784 148 registered cancer cases over the study period for all types of cancer. Erreygers' concentration index was used to examine the magnitude of socioeconomic inequality with regards to cancer outcomes. Furthermore, a generalised linear model was constructed to identify the influential factors on the overall burden of cancer. Results The results showed that cancer incidence (annual average percentage change, AAPC=1.33%), hospitalisation (AAPC=1.27%), cancer-related mortality (AAPC=0.76%) and burden of cancer (AAPC=0.84%) all increased significantly over the period. The same-day (AAPC=1.35%) and overnight (AAPC=1.19%) hospitalisation rates also showed an increasing trend. Further, the ratio (least-most advantaged economic resources ratio, LMR of mortality (M) and LMR of incidence (I)) was especially high for cervix (M/I=1.802), prostate (M/I=1.514), melanoma (M/I=1.325), non-Hodgkin's lymphoma (M/I=1.325) and breast (M/I=1.318), suggesting that survival inequality was most pronounced for these cancers. Socioeconomically disadvantaged people were more likely to bear an increasing cancer burden in terms of incidence, mortality and death. Conclusions Significant differences in the burden of cancer persist across socioeconomic strata in Australia. Policymakers should therefore introduce appropriate cancer policies to provide universal cancer care, which could reduce this burden by ensuring curable and preventive cancer care services are made available to all people

An observational study of pediatric healthcare burden in Angelman syndrome: results from a real-world study.

BACKGROUND:The objective of this study is to describe variations in the healthcare resource utilization (HRU) among individuals with Angelman syndrome (AS) over the first 12 years of life. Data for this study were drawn from the AS Natural History study (ASNHS), which is an observational study on the developmental progress, behavior, and medical morbidity of individuals with AS conducted over eight years. Caregiver-reported information on hospitalization, surgery, and medication utilization was used to assess HRU. Repeated measures mixed effect models were used to assess the relationship between age and probability of hospitalization, surgery, and prescription medication utilization. RESULTS:Mean age at study enrollment was 6 years of age and both sexes were equally represented. The mean number of visits per participant was three. Results from this study suggest that individuals with AS have a high HRU burden. Hospitalization and surgery burden were highest in the first year of life. Use of medications for seizures and sleep disturbance increased over time. CONCLUSIONS:The study highlights the significant healthcare burden among individuals with AS. Future studies that estimate cost and caregiver burden associated with AS are needed to assess the lifelong economic impact of AS on families and healthcare system

Estimating the global burden of endemic canine rabies

Background: Rabies is a notoriously underreported and neglected disease of lowincome countries. This study aims to estimate the public health and economic burden of rabies circulating in domestic dog populations, globally and on a country-by-country basis, allowing an objective assessment of how much this preventable disease costs endemic countries.&lt;p&gt;&lt;/p&gt; Methodology/Principal Findings: We established relationships between rabies mortality and rabies prevention and control measures, which we incorporated into a model framework. We used data derived from extensive literature searches and questionnaires on disease incidence, control interventions and preventative measures within this framework to estimate the disease burden. The burden of rabies impacts on public health sector budgets, local communities and livestock economies, with the highest risk of rabies in the poorest regions of the world. This study estimates that globally canine rabies causes approximately 59,000 (95% Confidence Intervals: 25- 159,000) human deaths, over 3.7 million (95% CIs: 1.6-10.4 million) disability-adjusted life years (DALYs) and 8.6 billion USD (95% CIs: 2.9-21.5 billion) economic losses annually. The largest component of the economic burden is due to premature death (55%), followed by direct costs of post-exposure prophylaxis (PEP, 20%) and lost income whilst seeking PEP (15.5%), with only limited costs to the veterinary sector due to dog vaccination (1.5%), and additional costs to communities from livestock losses (6%).&lt;p&gt;&lt;/p&gt; Conclusions/Significance: This study demonstrates that investment in dog vaccination, the single most effective way of reducing the disease burden, has been inadequate and that the availability and affordability of PEP needs improving. Collaborative investments by medical and veterinary sectors could dramatically reduce the current large, and unnecessary, burden of rabies on affected communities. Improved surveillance is needed to reduce uncertainty in burden estimates and to monitor the impacts of control efforts.&lt;p&gt;&lt;/p&gt