Financial Burden Of Care Research Articles

Financial burden of caring until the end of life

Data from South Australia suggest that carers for people with chronic and life-limiting illnesses leading to death are neither accessing theCentrelinkCarer Payment (currently $546.80 per fortnight) nor the Carer Allowance (currently $100.60 per fortnight). Given the prevalence, constancy and financial burden of caring, health professionals need to actively ensure that carers are aware of available financial resources. Carers of people with life-limiting illnesses (cancer, AIDS, end-stage organ failure and neurodegenerative diseases) take on an enormous role when someone close to themneeds care that extends from diagnosis through until death. Caring has health and social consequences for the carer, both during the role and after having relinquished it. The strongest predictor for community-based care at the end of life continues to be the presence of a carer. This care generates an imperceptible crescendo of responsibilities that often cannot be foreseen, especially the documented financial burden. To understand better the uptake of Centrelink resources available to carers through until the death of the care recipient, the investigators included questions on care and use of Centrelink resources in the random wholeof-population face-to-face survey, the South Australian Health Omnibus. The Omnibus, run annually since 1991, canvasses a range of researcher-initiated health and social issues with a large, representative section of the whole population. Data are directly standardized to the State’s population for age, gender, place of residence and socioeconomic status. Of the 2999 respondents (71% participation rate), 991 had someone close to them die in the last 5 years from an ‘expected’ death and 100 (3%) provided hands-on care for more than 5 days per week for amedian of 7.5 months (mean 22 months). Of the 100 hands-on carers identified, 24 reported that theyhad experiencedfinancial difficulties as a result of caregiving, but only six drew on Centrelink payments. Fourteen people either had to reduce work hours (8) or cease work altogether (6) as a result of caring. These data reflect that not even the non-means-tested and tax-freeCarerAllowance that can be paid for as long as the person is in the caring role was widely accessed despite all 100 carers being eligible. With financial burden identified by one in four people, it is concerning that the use of available financial help was so low. Every health professional needs to continually reassess the financial burden on carers and to ensure awareness and uptake of resources that are readily available to better support carers in their crucial roles.

Family Caregivers' Future Planning for Younger and Older Adults With Serious Mental Illness (SMI)

This study examines plans for future caregiving made by family members of younger ( n = 59) and older adults ( n = 16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.

Costs and financial burden of care and support services to PLHA and households in South India

The objective of this study is to estimate the medical and non-medical out-of-pocket expenditure on care and support services to PLHA, the financial burden on households, the indirect costs and coping strategies to meet the financial burden. A structured pre-tested questionnaire was used to collect data from a cohort of 153 clients of YRG CARE, a leading Chennai based NGO, who had completed the first and third waves of interview during 2000/01 and 2001/02 respectively. The results show that the median out-of-pocket medical and non-medical expenditures (direct cost) for treatment and services are Rs. 6,000 (US $ 122) in a reference period of six months. Clients on antiretroviral (ARV) drugs spend five times more than those not on ARV. The median direct cost significantly increases with stage of disease, household income, and poverty level. The financial burden of treatment, measured as the ratio of direct cost to household income, is greater on lower income (82%) than on higher income (28%) households. 31% and 45% of the clients reported loss of income and workdays respectively. In conclusion, the direct costs and financial burden of care and support services increase with the stage of disease. The financial burden is disproportionately more on low-income households. HIV/AIDS leads to depletion of savings and increases the indebtedness of households.

The Cost of Caring for Patients with HIV Infection in Hospice

This article explores the organizational barriers that have limited the number of persons with AIDS cared for by hospice programs throughout the United States. The financial implications of caring for persons with AIDS are discussed and data from a survey of 15 hospice providers is presented. Examples of creative and cooperative coalitions among hospice programs and other community organizations that maximize scarce resources and share the financial burden of caring for those infected with HIV are presented as models. The diverse funding sources and individual hospice program decisions about palliative treatments and drugs and admission criteria highlight the difficulty of generalizing from the survey.