Using discrete choice experiments to value informal care tasks: exploring preference heterogeneity

While informal care is a significant part of non‐market economic activity, its value is rarely acknowledged, perhaps reflecting a lack of market data. Traditional methods to value such care include opportunity and replacement cost. This study is the first to employ the discrete choice experiment methodology to value informal care tasks. A monetary value is estimated for three tasks (personal care, supervising and household tasks). The relationship between time spent on formal and informal care is also modelled and preference heterogeneity investigated using the Latent Class Model. Complementarity between supervising tasks and formal care is observed. Monetary compensation is important, with willingness to accept per hour values ranging from £0.38 to £0.83 for personal care, £0.75 for supervising and £0.31 to £0.6 for household tasks. Heterogeneity in preferences is observed, with monetary compensation being important for younger people, but insignificant for older individuals. Such heterogeneity is important at the policy level. Values are lower than those generated by opportunity cost and replacement cost methods, perhaps because of the limited ability of revealed preference methods to capture broader aspect of utility. Differences with contingent valuation methods are also observed, suggesting future research should investigate the external validity of the different methods. Copyright © 2010 John Wiley & Sons, Ltd.     

Evaluation of full costs of care for patients with Alzheimer's disease in France: The predominant role of informal care

Objective

It is crucial that the cost of Alzheimer's disease be evaluated, from a societal perspective, since the number of patients is expected to increase dramatically in the coming decades. This assessment of the full cost of care for community-dwelling patients with Alzheimer's disease in France also addresses the factors associated with informal care, its predominant component.

Data and methods

From 2009 to 2010, 57 patient/informal caregiver pairs were interviewed using the Resource Utilization in Dementia questionnaire, adapted to provide a micro-costing approach of the overall care process. Both the opportunity cost method and the proxy good method were used to value informal care. Ordinary least square regression was performed to determine factors associated with informal care.

Results

Average total monthly costs were €2450 with the proxy good method and €3102 with the opportunity cost method. Living with the patient, severity of dementia and hours spent on formal care were significantly associated with informal care time.

Policy implications

Since French allowance cannot cover all formal and informal non-medical costs, the choice for policy makers is either to spend more on formal care or to develop family care by investing in supportive programmes for informal caregivers.     

Economic valuation of informal care: the contingent valuation method applied to informal caregiving

This paper reports the results of the application of the contingent valuation method (CVM) to determine a monetary value of informal care. We discuss the current practice in valuing informal care and a theoretical model of the costs and benefits related to the provision of informal care. In addition, we developed a survey in which informal caregivers' willingness to accept (WTA) to provide an additional hour of informal care was elicited. This method is better than normally recommended valuation methods able to capture the heterogeneity and dynamics of informal care.Data were obtained from postal surveys. A total of 153 informal caregivers and 149 care recipients with rheumatoid arthritis returned a completed survey. Informal caregivers reported a mean WTA to provide a hypothetical additional hour of informal care of 9.52 Euro (n=124). Many hypotheses derived from the theoretical model and the literature were supported by the data.CVM is a promising alternative for existing methods like the opportunity cost method and the proxy good method to determine a monetary value of informal care that can be incorporated in the numerator of any economic evaluation.     

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.     

Economic valuation of informal care: the conjoint measurement method applied to informal caregiving

This paper reports the results of the application of the conjoint measurement method (CM) to determine a monetary value of informal care. Compared to the normally recommended valuation methods, like the opportunity cost method and proxy good method, CM is probably better able to capture the heterogeneity of informal care. We developed a survey in which informal caregivers were asked to rate four different hypothetical informal caregiving situations, which differed with respect to care hours, care tasks and monetary compensation. Data were obtained from postal surveys. A total of 135 pairs of informal caregivers and care recipients with rheumatoid arthritis (RA) from the Netherlands returned a completed survey and were used in the analysis. Informal caregivers require an extra compensation of 1.00 euro per hour for providing one additional hour of the same informal care task (meaning that from the seventh to the eighth hour, they require 8 euro). For providing two extra hours of care, they require 2.00 euro compensation per hour. The relative valuation of informal care tasks is very diverse. Respondents require a compensation of 13.43 euro per hour for switching from providing light housework to personal care and 0.56 euro per hour for switching from providing personal care to heavy housework. Though CM is sometimes regarded as cognitively complex, 70% of the respondents were able and willing to evaluate the hypothetical caregiving scenarios. Elderly respondents especially had more difficulty with the method. In sum, CM is seen as a promising alternative for existing methods to determine a monetary value of informal care. The presented valuations of informal care can be incorporated in the numerator of a cost-effectiveness ratio in economic evaluations of health care.     

Costs of informal care for patients in advanced home care: a population-based study

OBJECTIVES: Several studies have sought to analyze the cost-effectiveness of advanced home care and home rehabilitation. However, the costs of informal care are rarely included in economic appraisals of home care. This study estimates the cost of informal care for patients treated in advanced home care and analyses some patient characteristics that influence informal care costs. METHODS: During one week in October 1995, data were collected on all 451 patients in advanced home care in the Swedish county of Osterg?tland. Costs were calculated by using two models: one including leisure time, and one excluding leisure time. Multiple regression analysis was used to analyze factors associated with costs of informal care. RESULTS: Severity percent of the patients in the study had informal care around the clock during the week investigated. The patients had, on average, five formal care visits per week, each of which lasted for almost half an hour. Thus, the cost of informal care constituted a considerable part of the cost of advanced home care. When the cost of leisure time was included, the cost of informal care was estimated at SEK 5,880 per week per patient, or twice as high as total formal caregiver costs. When leisure time was excluded, the cost of informal care was estimated at SEK 3,410 per week per patient, which is still 1.2 times higher than formal caregiver costs (estimated at SEK 2,810 per week per patient). Informal care costs were higher among patients who were men, who were younger, who had their own housing, and who were diagnosed with cancer. CONCLUSIONS: Studies of advanced home care that exclude the cost of informal care substantially underestimate the costs to society, regardless of whether or not the leisure time of the caregiver is included in the calculations.     

Monetary valuation of informal care: the well-being valuation method

This paper estimates the monetary value of providing informal care by means of a well-being valuation method. This is done by assessing the compensating variation necessary to maintain the same level of well-being after an informal caregiver provides an extra hour of informal care. The informal caregiver's well-being is proxied by the answer to two subjective well-being questions that were posed in a questionnaire answered by 865 Dutch informal caregivers between the end of 2001 and the beginning of 2002. In the econometric analysis, a distinction is made between the care recipients who are and the ones who are not a family member of the informal caregiver. The results indicate that an extra hour of informal care is worth about 9 or 10 Euros. This equals 8 or 9 Euros if the care recipient is a family member and about 7 or 9 Euros if not. When applying the contingent valuation method to the same sample, the value obtained was 10.52 Euros per hour. This paper concludes that the well-being valuation method is a useful complement to the more traditional valuation methods in the health economics literature in general and more particularly for the economic valuation of informal care: it includes all costs and effects associated with providing care from the perspective of the informal caregiver, it is relatively cheap to implement, and it offers an additional possibility to determine the convergent validity of the different monetary valuation methods.     

Cost of informal care for stroke victims in a non-institutionalized general population

BACKGROUND: Stroke has a strong social impact since it causes disability, leading to dependency and the need for informal care. Although awareness of the importance of dependency is increasing, registries of the cost of informal care are lacking and consequently the real value of this activity to society is still unknown. OBJECTIVES: To calculate the cost of informal care of stroke victims in a general population, evaluate these costs according to patients' degree of dependency, and perform a one-way sensitivity analysis with variable unit costs from diverse sources. MATERIAL AND METHODS: Of all the patients with stroke diagnosed at 12-31-2004 (n = 95) among the population within a district health service of Navarre (Spain), 40 (44.4%) required informal care. Dependency for activities of daily life was evaluated by means of the Barthel (basic activities of daily life [BADL]) and Lawton-Brody indices (instrumental activities of daily life [IADL]). Time of informal care was evaluated following a bottom-up approach and diary survey method. RESULTS: The cost of the informal care of patients with stroke was 21,551.28 euros per year. According to the sensitivity analysis the range varied from 6,490.80 to 31,436.72 euros per year. Statistically significant differences in the cost of informal care were found according to patients' degree of dependency (BADL: 24,865.2 euros per year; IADL: 10,442.9 euros per year). CONCLUSIONS: The cost of informal care in ictus is high and is directly related to the degree of dependency.     

Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

The labour market costs of community care

This paper reports an empirical investigation into the influence of informal care responsibilities on the labour supply of women. The objective is to examine the argument that the UK policy of caring for the chronic sick 'in the community' involves a nontrivial opportunity cost in the form of the forgone labour supply of the informal carers upon which it relies. We find that informal carers who care for less than 20 h per week are, in fact, more likely to participate in the labour market, but tend to work for fewer hours per week than otherwise similar noncarers. Informal carers who care for 20 h or more a week are less likely to participate, but only slightly. However, when they do undertake formal employment, they tend to earn less per hour and work for fewer hours per week.     

Willingness to provide informal care to older adults in Germany: a discrete choice experiment

As the German population is continually aging and the majority of older adults still wish to ‘age in place’, the need for informal care provided by family and friends will correspondingly continue to increase. In addition, while the need for formal (professional) care services is also likely to increase, the supply already does not meet the demand in Germany today. The aim of our study is the elicitation of people’s willingness to provide informal care by means of a discrete choice experiment. The self-complete postal survey was disseminated to a random sample of the German general population in Lower Saxony. Data cleansing resulted in a final sample size of 280 participants. A conditional logit and a latent class model were estimated. All attributes were judged as highly relevant by the respondents. The results revealed that an increase in the care hours per day had the greatest negative impact overall on the willingness to provide informal care in our sample. The marginal willingness-to-accept for 1 h of informal care was €14.54 when having to provide informal care for 8 h in reference to 2 h per day. This value is considerably higher than the national minimum wage of €9.82. A three-class latent class model revealed preference heterogeneity. While a monetary compensation is often discussed to increase the willingness and availability of informal care in a country, our results show that this statement could not be generalized within our entire sample.

     

Formal and informal care for disabled elderly living in the community: an appraisal of French care composition and costs

Objectives  

Choices between formal and informal care for disabled elderly people living at home are a key component of the long-term care provision issues faced by an ageing population. This paper aims to identify factors associated with the type of care (informal, formal, mixed or no care at all) received by the French disabled elderly and to assess the care’s relative costs.     

Unmet care demands as perceived by stroke patients: deficits in health care?

OBJECTIVES: To describe unmet care demands as perceived by stroke patients and to identify sociodemographic and health characteristics associated with these unmet demands to investigate the appropriateness of health care. SETTING: Sample of patients who participated in a multicentre study (23 hospitals) on quality of care in The Netherlands. PATIENTS: Non-institutionalised patients who had been admitted to hospital because of stroke. Patients were interviewed six months (n = 382) and five years (n = 224) after stroke. DESIGN: Six months after stroke data were collected on: (a) sociodemographic characteristics in terms of age, sex, living arrangement, educational level, and regional level of urbanisation; (b) health characteristics in terms of cognitive function, disability, emotional distress, and general health perception; (c) utilisation of professional care; and (d) unmet care demands as perceived by patients. Data on utilisation of care and unmet demands were also collected five years after stroke. Data were collected from June 1991 until December 1996. RESULTS: The percentage of unmet care demands was highest at six months after stroke (n = 120, 31%). Multiple logistic regression analyses showed that disabled patients were more likely to be unmet demanders for therapy, (I)ADL care and aids (range odds ratio (OR) = 3.5 to 7.9) than to be no demanders, whereas emotionally distressed patients were more likely to be unmet demanders for psychosocial support (OR = 3.8). When comparing unmet demanders with care users only for (instrumental) activities of daily living (I)ADL care differences were found: men (OR = 3.8), disabled patients (OR = 3.0), and emotionally distressed patients (OR = 6.5) were more likely to be users. CONCLUSIONS: Patients who perceived an unmet care demand do appear genuinely to have an unmet care need as supported by assessment of their health status: (a) types of unmet care demands correspond with types of health problems and (b) unmet demanders were in general unhealthier than no demanders and more comparable with care users for health characteristics. IMPLICATIONS: To improve an equitable distribution of healthcare services, guidelines for indicating and allocating health care have to be developed and should be based on scientific evidence and consensus meetings including professionals' and patients' perspectives.     

Cost of informal care for patients with cardiovascular disease or diabetes: current evidence and research challenges

Purpose

Patients with cardiovascular disease (CVD) or diabetes often require informal care. The burden of informal care, however, was not fully integrated into economic evaluation. We conducted a literature review to summarize the current evidence on economic burden associated with informal care imposed by CVD or diabetes.

Methods

We searched EconLit, EMBASE, and PubMed for publications in English during the period of 1995–2015. Keywords for the search were informal care cost, costs of informal care, informal care, and economic burden. We excluded studies that (1) did not estimate monetary values, (2) examined methods or factors affecting informal care, or (3) did not address CVD or diabetes.

Results

Our search identified 141 potential abstracts, and 10 of the articles met our criteria. Although little research has been conducted, studies used different methods without much consensus, estimates suffered from recall bias, and study samples were small, the costs of informal care have been found high. In 2014 US dollars, estimated additional annual costs of informal care per patient ranged from $1563 to $7532 for stroke, $860 for heart failure, and $1162 to $5082 for diabetes. The total cost of informal care ranged from $5560 to $143,033 for stoke, $12,270 to $20,319 for heart failure, and $1192 to $1321 for diabetes.

Conclusions

The costs of informal care are substantial, and excluding them from economic evaluation would underestimate economic benefits of interventions for the prevention of CVD and diabetes.

     

On insuring and caring for parents' long-term care needs

When adult children are financially responsible for their parents, they can take considerable interest in the amount of their parents' long-term care (LTC) insurance. In this paper, we look at the optimal levels of LTC insurance and of informal care, and at the link between these two decisions when the child, who provides informal care, is also the decision-maker with regard to LTC insurance. Interestingly, results differ depending on the degree of both parental and child altruism and indicate either complementarity or substitutability between insurance and informal care. In particular, we show in the presence of child altruism that insurance stimulates the offer of informal care, contrary to the case where the insurance decision is made by the elderly parent. We also investigate how exogenous shocks with respect to the opportunity cost of informal care, initial wealth levels and bequests modify simultaneously the optimal level of insurance and informal care.     

新疆牧业地区失能老年人居家非正式照护质量的影响因素分析

目的 分析新疆牧业地区失能老年人居家非正式照护质量的影响因素。方法 运用家庭照护质量量表（FCCI）对335例新疆牧业地区哈萨克族失能老年人居家非正式照护者进行现场调研,采用多重线性回归法对照护质量的影响因素进行分析。 结果 居家非正式照护质量平均得分为44分;被照护老年人的失能程度、与照护者关系、被照护时间、照护者就业情况、年龄及社会支持是影响居家照护质量的主要因素,上述6个变量解释失能老年人居家照护质量总变异量的32.3%。其中,被照护老人的失能程度重（Beta = - 0.475）、配偶照护者(Beta = - 0.171)、被照护时间长(Beta = - 0.180)、照护者就业状况差(Beta = - 0.134)、照护者年龄大(Beta = - 0.116)为其危险因素,高社会支持(Beta = 0.110)为保护因素。结论 新疆政府相关部门在解决失能老年人的长期照护问题中,应优先考虑牧业地区失能程度重、照护时间长及年龄较大的照护者,减轻其照护负担,提高居家非正式照护质量。     

The direct and indirect financial costs of informal cancer care: A scoping review

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs? opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.     

Time-bound opportunity costs of informal care: consequences for access to professional care, caregiver support, and labour supply estimates

The opportunity costs associated with the provision of informal care are usually estimated based on the reduced potential of the caregiver to partake in paid work (both in terms of whether they are able to undertake paid work, and if so the hours of work undertaken). In addition to the hours of informal care provided, these opportunity costs are also likely determined by the necessity to perform particular informal care tasks at specific moments of the day. The literature, to date, has largely overlooked this dimension of informal care. We used Dutch data from time use diaries which report patterns of informal care throughout the day which enables investigation of when particular activities are undertaken. We found that whereas some tasks must be performed at a relatively fixed time of day, others are shiftable and can be performed at other times or even on different days. Household and organisation activities are more likely to be undertaken by employed caregivers, and seem largely to be shiftable; whereas personal care contains unshiftable activities. This implies additional opportunity costs of providing personal care tasks - we term these "time-bound" opportunity costs. Since the care recipient's need for care may in part relate to unshiftable tasks, we conclude that one should be careful with using care need as an instrument of informal care in labour supply equations.     

The use of formal and informal home care by the disabled elderly.

Using data from the Channeling experiment, this article analyzes the factors associated with the amount of formal and informal home care received by the disabled elderly. The amounts of formal and informal home care used increase with disability, as well as with other measures of need for care. The use of formal care increases, and the use of informal care decreases, with income. The availability of immediate family increases reliance on informal care and reduces reliance on formal care. The findings have implications for the design of proposed programs to expand publicly financed home care for the disabled elderly.