Caregiver Income Research Articles

Expressed emotion and depression in caregivers of older adults with dementia: results from Taiwan

Objectives: The purpose of this study was to examine the relationship between (1) expressed emotion (EE) and characteristics of Taiwanese dementia patients and their family caregivers and (2) EE and depressed mood, burden, and perception of health in Taiwanese caregivers of elderly persons with dementia.Methods: Sixty-five primary caregivers of elderly persons with mild to severe dementia were recruited from institutions in Taiwan and they completed four standardized questionnaires: Level of Expressed Emotion (LEE) scale, Center for Epidemiologic Studies Depression (CES-D) scale, Zarit Burden Inventory (ZBI), and General Health Perceptions subscale of the Medical Outcomes Study Short Form 36 Health Survey (MOS SF-36).Results: EE was positively associated with caregiver depression (r = .543; p < .001) and burden (r = .532; p < .001), and negatively associated with caregivers’ perceived health (r = −.316; p = .010). The higher the caregivers’ depression and burden, the greater was their EE and the lower the caregivers’ perceived health, the higher was their EE. EE was negatively associated with caregiver education (r = −.279; p = .024) and income (r = −.261; p = .036). The lower the caregivers’ education and income, the higher was their EE.Conclusion: The significant relationship between EE and caregivers’ mood and perceived burden suggests that caregivers with elevated mood or burden may put persons with dementia at greater risk for toxic, negative interactions from them. Although this study's design precludes attributing directionality, more depressed caregivers are at a greater risk of higher EE which may affect care of their elderly demented family members. Additional research is warranted with a larger sample size and/or a longitudinal design.

Self-care among caregivers of people living with HIV and AIDS in Kakola location, Nyando District, Kisumu County, Kenya

This study was carried out in Kakola Location of Nyando District in Kenya. The aim of study was to determine the factors influencing the practice of self-care among caregivers for person living with HIV/AIDS (PLWHAs) as well as their practice of self-care. A study by World Health Organization approximated that in developing countries, the need for long-term care will increase by as much as 40% in the coming years. HIV/AIDS has been cited as one of the challenges in long-term care. As demand for long-term care increases, the assumption that extended family networks can meet all the needs of their members deteriorates. The community-based survey employed descriptive cross-sectional design, involving primary caregivers of PLWHAs in Kakola location who had practiced care giving for more than 3 months. A household survey was conducted with 150 respondents. Quantitative data were analyzed using the Statistical Package for Social Sciences (SPSS) program version 11.0. Simple frequencies and cross tabulations to compare variables were produced. Microsoft Excel was used to produce tables and graphs. Majority of the respondents 124 (82.7%) were female, while 26 (17.3%) were male. Self-care elements most practiced by the respondents in all the age categories were infection prevention and nutritional care. Female respondents had the highest proportions in all the practices of self-care. The results also showed that gender, relationship of patient to caregiver and marital status were the main demographic factors that significantly influenced the practice of self-care among caregivers. There was a significant relationship between main sources of income of caregivers with the practice of self-care. The study also revealed that respondents with no education had the lowest number of respondents practicing all the six practices of self-care and belonging to a support group. Recommendations for the study included, forging partnerships among stakeholders, training of caregivers and review of the home-based care policy.

PRM40 - Systematic literature review to evaluate and characterize the health economics and outcomes research studies in India

Health economics research is in its infancy in India. This systematic literature review aimed to identify, evaluate, and characterize the variety, quality, and intent of the health economics and outcomes studies being conducted in India. Studies published in English language between 1999 and 2012 were retrieved from Embase and PubMed databases using relevant search strategies. Two researchers independently reviewed studies as per Cochrane methodology; information on type of research and outcomes were extracted. Quality of reporting was assessed for model-based health economic studies using a published 100-point Quality of Health Studies (QHES) instrument. Subjective assessment was used for the remaining studies. RESULTSOf 546 studies screened, 132 studies were included in the review. The broad study categories were cost-effectiveness analyses ([CEA], 54 studies), cost analyses (19 studies), and burden of illness (18 studies). The outcomes evaluated in cost studies were direct and indirect costs, and incremental cost-effectiveness ratio (ICER), quality-adjusted life years (QALYs), and disability-adjusted life years (DALYs). Most studies were conducted from societal perspective. Direct medical costs assessed cost of medicines, monitoring costs, consultation and hospital charges along with non-medical costs (travel and food for patients and care-givers). Loss of productivity and loss of income of patients and care-givers were identified as components of indirect cost. Overall, 33 studies assessed QoL, and WHO Quality of Life-BREF (WHOQOL-BREF) was the most commonly used instrument in these studies. Quality assessment for modeling studies showed that most studies were of high quality (mean [range] QHES score to be 75.5 [34-93]). CONCLUSIONSThis review identified various patterns of health economic studies in India. Majority of the CEA studies conducted in recent years were of high quality. Despite this, utilization of health care resources is inappropriate and economic evaluation needs relevance to the context of health care in India.

The impact of bronchopulmonary dysplasia on caregiver health related quality of life during the first 2 years of life

Preterm children with bronchopulmonary dysplasia (BPD) frequently require complex home medical regimens and re-hospitalization during the first 2 years of life. The burden of caring for these medically complex children may negatively affect caregiver health related quality of life (HRQoL). The objectives of this study were to measure caregiver HRQoL of children with BPD and to identify factors that impact caregiver HRQoL during the first 2 years of life. Children (n = 186) were recruited from the Johns Hopkins BPD Outpatient Clinic between January 2008 and July 2011. Caregiver HRQoL was measured using The PedsQL(TM) Family Impact Module. Respiratory symptoms and morbidities were assessed using questionnaires. Among caregivers of BPD children, significant improvement in physical, worry, and daily domains improved longitudinally as children aged. An association was found between lower total HRQoL scores and caregivers of BPD children who reported more respiratory symptoms and acute care usage. No difference in total HRQoL scores was found between caregivers of BPD children requiring respiratory/enteral support and caregivers of children who did not. Caregiver income and educational level did not predict total HRQoL score, but Non-White race and public insurance was associated with a higher total HRQoL score at the first outpatient visit. An association was found between lower HRQoL scores and caregivers of BPD children with frequent respiratory symptoms and acute care usage. Screening for low HRQoL in caregivers of BPD children with frequent respiratory illnesses should be considered to identify those who may benefit from additional support and intervention.

Planning, design and implementation of the enhancing child nutrition through animal source food management (ENAM) project

The Global-Livestock Collaborative Research Support Program’s (GL-CRSP) Child Nutrition Project, a controlled feeding trial in rural Kenya, demonstrated the importance of Animal Source Foods (ASF) for children’s micronutrient status and cognitive development. These findings prompted research efforts to understand the constraints to ASF in children’s diets in Africa so as to design targeted interventions to improve the ASF quality of children’s diets. The Enhancing Child Nutrition through Animal Source Management (ENAM) project (2004-2009) emanated from participatory formative research that identified six principal constraints to the inclusion of Animal Source Foods (ASF) in children’s diets in Ghana, including low income of caregivers, poor producer-consumer linkages, inadequate nutrition knowledge and skills of extension staff and caregivers, cultural beliefs, and inequitable household food distribution. To address these constraints, the ENAM project undertook a multidisciplinary community development, research and capacity building initiative with the goal of augmenting caregivers’ access to and use of ASF in children’s diets. Participatory processes were used to implement an integrated microcredit, entrepreneurship and nutrition education intervention with 181 caregivers of children 2- to5-years old in six rural communities across three agro-ecological zones (Guinea Savannah, Forest-Savannah Transitional and Coastal Savannah) of Ghana. Six matched communities from the same ecological zones served as comparison sites. Quantitative methods that included surveys, child anthropometry, and dietary assessment as well as qualitative case studies were used to assess the effect of the intervention on household, caregiver and child outcomes of interest. This paper presents the key features of the planning, design and implementation of the community intervention and the research processes undertaken to assess the project’s impacts. The ENAM project model presents a unique approach for addressing caregivers’ income and knowledge barriers to improve child nutrition in rural Ghana and may be a promising intervention model for scale-up in Ghana and other African countries.

Prevalência e fatores associados à adesão de crianças na terapia antirretroviral em três centros urbanos do sul do Brasil

This study verified the prevalence and associated factors to the adhesion of children in Highly Active Antiretroviral Therapy (HAART), in three urban centers in Southern Brazil: Passo Fundo, Canoas and Cachoeira do Sul. The population of the study consisted of 44 children, between 18 months to 13 years old, in HAART. Data was collected by applying a socio-demographic questionnaire with the caregivers, aiming to know the children's sex, age, schooling, treatment type and clinical state, as well as the caregiver's income, age and schooling. Adhesion was considered when the effectiveness of the HAART was at least 95% of the prescribed regimen. The design of the study was analytical and transversal. Data analysis was performed by descriptive analysis (frequency, percentage) and bivariate analysis (chi-square test), crossing the outcome variable (adhesion to HAART) and the independent variables (sociodemographic, clinical state, treatment type, caregiver's age and schooling). The results showed 82% of adhesion in the studied children. The bivariate analysis did not point out significant associations between adhesion and independent variables. A possible linear tendency to increase the adhesion as a function of the improvement of the physical state was observed.

Budget Impact and Cost-Effectiveness of Including a Pentavalent Rotavirus Vaccine in the New Zealand Childhood Immunization Schedule

To estimate: 1) rotavirus disease burden in New Zealand children aged under 5 years, and 2) health benefits, budget impact, and cost-effectiveness of incorporating a pentavalent rotavirus vaccine (PRV) into the national immunization schedule. A static equilibrium model was developed to evaluate health benefits and budget impact of vaccinating five successive birth cohorts with PRV at $50 per dose and 85% coverage (three doses). Cost-effectiveness was estimated from the societal perspective in year 5 of the program, with future health benefits discounted at 3.5% per annum. By the age of 5 years, one in five children will have sought medical advice for rotavirus gastroenteritis and one in 43 will have been hospitalized. In 2009, we estimate 1506 hospitalizations (476 per 100,000; 95% confidence interval 451, 502), 3086 Emergency Department (ED) presentations not requiring hospitalization, plus 10,120 cases of rotavirus gastroenteritis managed solely in primary care. The annual societal cost is $7.07 million, including 41% from hospitalization and 25% from caregiver income loss. Health benefits will increase and the cost of illness will decline by 78% in year 5 as successive birth cohorts are immunized. In the fifth year, 1191 hospitalizations, 2442 ED treated cases, 9762 primary care consultations, and 0.8 deaths will be averted. It requires six vaccinated children to avoid one primary care consultation, 49 to avert one hospitalization, and 73,357 to prevent one death. The incremental cost is $2.99 million and the break-even price per vaccine dose is $32.39 at 2006 prices. The cost is $2509 to avert one hospitalization and $305 to prevent one case seeking health-care assistance. The cost per life-year gained in year 5 is $143,097 and the cost per quality-adjusted life-year (QALY) gained is $46,092 (US$26,774). The cost per QALY is sensitive to incidence rates, vaccine price and efficacy, loss of quality of life by the child, case fatality, and caregiver income loss. From a societal perspective, addition of PRV to the New Zealand childhood immunization schedule would confer important clinical gains at a modest cost per QALY gained.

Exploring the other side of cancer care: The informal caregiver

Objectives To identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression. Methods One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies. Findings One-way ANOVA showed that there are significant differences among the various educational levels ( p < 0.001) and the income ( p < 0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females ( p = 0.29). In regression analysis it was found that only caregiver's income and patient's age are statistically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies ( p < 0.001). Conclusions Caregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver's income and patient's age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving.

Caregivers of Older Clients with Severe Mental Illness: Perceptions of Burdens and Rewards

Approximately 1 million older persons have a severe mental illness (SMI) and this number is expected to double in the coming decades. While research studies have examined the experiences of family members of younger persons with SMI, very little is known about caregivers of older SMI clients. This study examined the characteristics, burdens, and rewards of 60 caregivers of older SMI clients using a modified version of family caregiver scales of Tessler, Fisher, &amp; Gamache (1992). Hierarchical linear regression analyses indicated that increased client symptoms, higher levels of help provided, increased caregiver income, and knowledge about the care recipient's diagnosis were predicative of caregiver burden. Decreased number of client symptoms, care recipient being female, and greater experience of the presence of God predicted caregiver rewards. Implications of these findings are discussed.

Can Interventions to Promote Animal Production Ameliorate Undernutrition? ,

The potential of animal-source foods (ASF) to alleviate micronutrient deficiencies is well recognized. How the intake of ASF can be effectively increased is not known, but promoting animal production (AP) is one possible method. We reviewed the impact of interventions promoting AP on nutritional status and on 6 nutrition-related outcomes: production, household income and expenditure, caregiver income, caregiver time and workload, zoonosis, and dietary intake. Information about the effects on each of the possible outcomes is needed to be able to weigh trade-offs in the potential benefits and costs of promoting AP. The majority of the 14 identified studies found a positive effect of the promotion of AP on production. All studies evaluating the impact on household income or expenditure reported a positive effect on these outcomes. Evidence regarding impact on caregiver income and on caregiver time and workload is too limited to draw any conclusions. We found no studies that examined the impact of the promotion of AP on zoonosis. The studies generally reported a positive impact on dietary intake. Only 4 studies evaluated the impact on nutritional status and found a positive effect. It is unclear whether the improvements in dietary intake and nutritional status were a direct effect of increased production or an indirect effect of increased income. Future studies on the AP-nutrition link would benefit from stronger methodological designs. Available evidence is insufficient to answer whether the promotion of AP is an effective means to alleviate undernutrition.

Family Conflict as a Mediator of Caregiver Strain*

Abstract: The present study used structural equation modeling to examine the potential mediating effect of family conflict on caregiver strain in a randomly drawn household sample of 650 adults with primary care responsibility for an adult age 50 or older with a mental disability. Caregiver strain was directly influenced by the conflict, disagreements, and hardships experienced by the caregiver’s family. Specifically, family conflict was found to mediate the impact of care recipient mental impairment and caregiver educational level on caregiver strain, and mediate partially the impact of caregiver income and caregiver‐care recipient relationship. Findings suggest the importance of considering family‐centered approaches when designing interventions to assist family caregivers.

Caregiver Psychosocial Characteristics and Children's Adherence to Antiretroviral Therapy

Although parents and caregivers may have primary responsibility for their children's medication- taking, surprisingly few studies have examined caregiver psychosocial correlates of children's adherence to antiretroviral therapy (ART). This cross-sectional, descriptive study examined the relationship between caregiver psychosocial characteristics and medication adherence among children with HIV. Fifty-four caregivers of children with HIV completed a demographic questionnaire, the Parenting Stress Index, the Brief Symptom Inventory, the Family Support Scale, and the Support Functions Scale. Adherence to ART was measured with children's 6-month pharmacy refill histories. Children and caregivers were primarily African American, urban, and poor (63% reported <$15,000 annual household income). Univariate analyses showed that an adherent classification (>/= 80% refill rate) was associated with shorter duration of highly active antiretroviral therapy (HAART) treatment, nondisclosure of the HIV diagnosis to the child, lower caregiver income level, having a nonbiologically related caregiver, and less caregiver psychiatric distress. In a multivariate logistic regression, duration of child's HAART treatment, child HIV disclosure status, caregiver income, and caregiver psychiatric distress accounted for 63% of the variance in adherence. Findings highlight the complexity of children's adherence to ART and the need for multicenter studies with greater sample sizes to explore in more detail the effects of caregiver psychological distress and child HIV disclosure status on adherence as well as the ways in which regimen fatigue and adherence fluctuate over time.

Does the promotion of animal production improve nutrition?

The nutritional benefits of animal source foods for children in developing countries are well-recognized. Whether the promotion of animal production (AP) leads to improved nutrition has not been clear. We conducted a literature review that focused on five different nutrition-related outcomes: production, household income and expenditure, dietary intake and nutritional status, caregiver time and workload and caregiver income. The studies included 4 on aquaculture, 5 on dairy production, 3 on poultry, and 3 in which AP was part of integrated projects including nutrition education. The majority of studies found a positive effect on production. Interventions targeted to women or including nutrition education consistently reported a positive effect on dietary intake and nutritional status. It is unclear whether the improved consumption was a direct effect of increased production or an indirect effect of increased income. All studies reporting on household income or expenditure found a positive association between these outcomes and the intervention. Evidence regarding impact on caregiver income is too limited to draw any conclusions. We found no studies that examined the impact of the promotion of AP on caregiver time spent on childcare. Also, little information was available about zoonosis. Future studies on the AP nutrition link would benefit from stronger methodological designs. The impacts of AP on caregiver income and workloads and on risk of zoonotic infection remain to be investigated. Support to Cornell University by the International Livestock Research Institute from the USAID Linkage Fund.

Acquisition of Bed-Nets, Sleeping-Habits, and Control of Malaria in the Gambia: Sociocultural Dimension

Sir,Randomized controlled trials in African settings with different intensities of malaria-transmission have shown that insecticide-treated nets are efficacious in reducing postneonatal mortality from all causes (1,2). The Gambian National Impregnated Bed-net Programme achieved an 83% net-treatment rate, and overall mortality of children aged less than five years fell by 25% a decade ago (1). However, severe malaria still remains a leading cause of mortality and morbidity among young Gambian children (3,4). Much has been reported on the coverage of insecticide-treated nets under trial situation, but the proportion of households that are properly deploying insecticide-treated nets in real life is not currently known.We interviewed 69 parents and caregivers of children with cerebral malaria presenting to the paediatric ward of Bansang Hospital in the Gambia, during June- December 2001, using structured questionnaires. Caregivers who consented to the interview were asked about ownership of mosquito bed-net, its use, and household sleeping-habits. Questions were specifically asked about where children and adults usually slept in the first six hours (20.00 hours to 02.00 hours) of the night.Data from these structured interviews were coded, entered, and verified with double-entry by two data-entry clerks into ENTER using the Epi Info software (version 6.04) (Centers for Disease Control and Prevention/ World Health Organization, 2000). Data were analyzed using the Stata software (version 8) (Stata Corporation, Texas, USA).All the caregivers understood the usefulness of bed-nets, and 94% of them had at least a net hanging in their rooms and were prepared to use insecticide-impregnated bedand window-nets. Fifty-three (76.8%) caregivers and their family members usually slept outdoor for most of the night (20.00-02.00 hours). The remaining 16 (23.2%) caregivers slept indoor.When the relationship between sleeping-habits and malaria-related knowledge, attitude, and practice (KAP) was examined, it was observed that those who slept outdoor (frontage) in the first six hours of the night were more likely to fail to use bed- and window-impregnated nets and were more likely to be ignorant of the cause of illness (Table) but there was no significant difference in starting treatment at home. Although there was no significant association between sleeping-habits and income of caregivers, those who slept outside were less likely to have windows on their wall compared to those who slept indoor. This became insignificant when the educational status of caregivers was controlled for (Table).Although the National Impregnated Bed-Net Programme achieved high rates of net-treatment and coverage a decade ago, the continued use of this important malaria-control measure faces some economic and sociocultural challenges. …

Willingness to pay for AIDS treatment: myths and realities

By AIDS day 2002 HIV/AIDS in Africa had killed 20.4 million and infected 29.4 million people. This number of deaths is seven times that in the Nazi holocaust and it approaches the death toll associated with transatlantic slave trading. Treatment for AIDS includes monitoring of disease progression psychosocial support provision of adequate nutrition teaching healthy living and survival skills prophylaxis and treatment of opportunistic infections and antiretroviral treatment. Such holistic treatment can now be provided at an all-inclusive cost of about US$600 dollars per year. Yet most African countries and donors still judge this amount to be too costly. The cost of not treating a person with AIDS includes the loss of output of each patient; loss of income of care-givers; cost of treatment in homes clinics and hospitals; funeral costs; death and survivor benefits; and the cost of orphan care and support. These costs are met by patients families employers governments and society at large. On economic grounds alone treatment should be provided for all those for whom the present value of expenses exceeds the cost of not giving treatment. Results of several studies show that this situation is now true for many classes of people and workers. The issue has become not whether we can afford to treat but whether we can afford not to. Here I review imagined obstacles and faulty arguments against large-scale treatment programmes and show that unwillingness to pay is the main reason for inaction. (excerpt)

The characteristics of dementia caregiving onset.

This study examined the characteristics of entry into the caregiving role for family and friends of older adults suffering from dementia. Using data from a large community survey of informal caregivers of patients who visited the University of Kentucky's Alzheimer's Disease Research Center (n = 1055), respondents were classified into one of four onset sequences: recognition-diagnosis, care provision, recognition-care, and diagnosis dependent. A multinomial logistic regression identified several characteristics (i.e., caregiver income, time since onset, care recipient gender, care recipient living status, and primary caregiver identification) that were significantly associated with various caregiving onset patterns. The findings describe the complexity of the entry process and its potential association with health-related transitions in the caregiving career.

Changes in living arrangements of functionally dependent older adults and their adult children.

This study investigated health and sociodemographic variables associated with co-residency patterns among older patients and their adult children following discharge from an acute care hospital. Data for the analysis were obtained from 172 adult children caring for functionally impaired parents. Logistic regression was employed to determine the probability that an older parent establishes co-residency with the adult child following hospitalization instead of remaining in a separate household. Results indicate that the overall level of caregiver involvement in activities of daily living (ADL) and instrumental activities of daily living (IADL) were strong predictors of parent and adult children forming a joint household. Increased household income of caregivers was inversely related to co-residency. Decisions about co-residency following hospitalization appear to hinge both on parental need and the resources of the adult child, suggesting that the decision to move together is largely one of need and not preference.