Caring for and caring about: Disentangling the caregiver effect and the family effect

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Abstract

Besides patients’ health and well-being, healthcare interventions may affect the well-being of significant others. Such ‘spill over effects’ in significant others may be distinguished in two distinct effects: (i) the caregiving effect and (ii) the family effect. The first refers to the welfare effects of providing informal care, i.e., the effects of caring for someone who is ill. The second refers to a direct influence of the health of a patient on others’ well-being, i.e., the effects of caring about other people. Using a sample of Dutch informal caregivers we found that both effects exist and may be comparable in size. Our results, while explorative, indicate that economic evaluations adopting a societal perspective should include both the family and the caregiving effects measured in the relevant individuals.

Research highlights

▶ The caregiving effect is the welfare effect of providing informal care, i.e., the effect of the burden of caregiving. The family effect is a direct influence of the health of a patient on others’ well-being, i.e., the effects of caring about other people. ▶ TThe caregiving effect can be present only in caregivers while the family effect in the broader group of significant other, regardless of their caregiving status. However, both effects are usually disregarded in economic evaluations which treat patients as isolated individuals. ▶ Using a sample of Dutch informal caregivers we found that both effects exist and may be comparable in size. Our results, while explorative, indicate that economic evaluations adopting a societal perspective should include both the family and the caregiving effects measured in the relevant individuals.

Introduction

It is increasingly recognised that patients should not be treated as isolated individuals in economic evaluations (Brouwer and Koopmanschap, 2000, Basu and Meltzer, 2005). The US Panel (Gold et al., 1996), for instance, recognized that healthcare affects “significant others” as well as patients themselves, and encouraged analysts to “think broadly” about including the effects on “health-related quality of life” of significant others.1 Furthermore, healthcare may induce changes in the general welfare of the patient and his or her social environment (e.g. Basu and Meltzer, 2005, Dixon et al., 2006, Burton et al., 2008, Bobinac et al., 2010). If for instance we imagine what it means to parents to see their child relieved of suffering and illness, it is clear that these welfare gains can be substantial. Still, such well-being effects in significant others are typically neglected in economic evaluations, resulting in potentially suboptimal decisions from a societal perspective. Appropriate inclusion of such effects, however, requires clarity regarding their nature, relevance, and source. In this article, we argue and provide supporting evidence that such “spillover effects” (Basu and Meltzer, 2005) in significant others are indeed relevant and may stem from two distinct sources: (i) the caregiving effect and (ii) the family effect.

The caregiving effect refers to the welfare effects of providing informal care, i.e., the effects of caring for someone who is ill. The patient's degree of illness and care dependency thus has an indirect yet uncontroversially significant effect on the welfare of the informal caregiver (e.g. Brouwer et al., 2006). Inclusion of informal care(givers) in economic evaluation has been repeatedly encouraged in the literature (see e.g. Smith and Wright, 1994, Gold et al., 1996, Brouwer et al., 1999), which now offers ample evidence regarding its effects. Informal care involves sacrifices in time (i.e., opportunity costs), (un)pleasant activities (i.e., process utility), physical and emotional strain (i.e., health losses), social isolation (i.e., loss of well-being), et cetera. Several methods of including informal care in economic evaluations have been proposed albeit they differ greatly with respect to the aspect of informal care they value (see e.g. van den Berg et al., 2004, Koopmanschap et al., 2008 for recent discussions).

The family effect (Brouwer et al., 1999) refers to the fact that we care about other people and their health (Becker, 1976, Boulding, 1981, Basu and Meltzer, 2005); our children and our parents, for instance. This effect therefore entails a direct influence of the health of a patient on the welfare of a significant other. Indeed, Burton et al. (2008), studying parents of children with disabilities, noted that parental well-being is likely to be directly affected by concern for the child's well-being. Moreover, Basu and Meltzer (2005) argued that health economic evaluations treat patients as “isolated individuals and neglect the effects of improvement in patients’ health on the welfare of their family members.” They demonstrated how the welfare of family members could be directly and indirectly affected by improvements in the health of a patient, as well as found empirical support that such spillover effects may affect treatment decisions. While acknowledging the equity dilemma related to the inclusion of these effects,2 they conclude that “cost-effectiveness analyses may better reflect the full costs and benefits of medical interventions if they incorporate these family effects.” Such claims align with taking a societal perspective in economic evaluation and welfare maximisation, and have been made before (e.g. Brouwer et al., 1999, Brouwer, 2006). It is, however, crucial to avoid double-counting in the final analysis (Bergstrom, 2006).

The caregiving effect by definition is present in people providing informal care, regardless of their relationship to the patient. The family effect, on the other hand, is present in a larger group of people who have a social relationship with someone who is ill, whether or not they provide care. Typically, economic evaluations will ignore both the family and the caregiving effects on the well-being of significant others. While informal caregivers are increasingly recognized as an important group of significant others, family members are not. This means that when significant-other effects are included in an economic evaluation, they probably refer to informal caregivers. Informal care is, however, usually provided by the patient's family and friends because of the social relationship between patient and caregiver, meaning that the caregiving and family effects will normally both be present in informal caregivers. Depending on the measurement method, therefore, the well-being effects in informal caregivers may comprise both the caregiving and the family effect. For instance, van den Berg and Ferrer-i-Carbonell (2007) applied the well-being method to value informal care, deriving a monetary value of informal care from the self-reported happiness of caregivers. Given that caregivers are often partners or blood relatives of the patients, their happiness is likely to be influenced by both the caregiving and the family effect, unless some adjustment is made. van den Berg and Ferrer-i-Carbonell (2007) found that the monetary value of providing an extra hour informal care is higher if the care recipient is a family member, and argue that this may be the case because “emotional involvement…reduces caregivers’ well-being considerably.”3 They do not, however, explicitly correct the monetary value of informal care for the family effect. A recently developed instrument to measure care-related quality of life, the CarerQol (Brouwer et al., 2006), also uses a happiness scale as outcome. Here again, both effects can influence the rating. When using other valuation methods such as contingent valuation or discrete choice experiments, similar problems may occur. For instance, when an additional hour of informal care is valued, we do not know whether respondents associated (explicitly or implicitly) an additional hour of informal care with a worsened health status of the patient.

This implies that if the family and caregiving effects are conflated in the measurement of well-being, the family effect may be attributed to informal care and valued only in studies in which informal care is significantly present. In other cases, where informal care is not significantly present, the family effect goes unnoticed. This can obviously lead to misleading conclusions and suboptimal decisions, as it may bias the results of an economic evaluation towards certain illnesses or groups of patients (Brouwer, 2006).

This article aims to establish the existence of the caregiving and family effects in a sizeable and homogenous sample of Dutch caregivers and to estimate the relative size of these effects. The structure of the paper is as follows: in Section 2, the methods used are highlighted. Section 3 presents the results; in Section 4 we discuss the results and their implications for economic evaluations, acknowledging different views on what to include in such evaluations.

Section snippets

Methods

We set out to establish the (independent and separable) existence of the caregiving effect and the family effect in informal caregivers. That is, controlling for other variables (own health, socio-economic characteristics and so on) we wish to demonstrate the existence of the caregiving effect (the effect of the burden of providing care on caregivers’ well-being) and the family effect (the direct influence of the health of the patient on caregivers’ well-being).

In general terms our model is:Wi=f

Results

Our sample comprised mostly burdened caregivers in relatively good health who provided on average almost eight tasks per patient. Often, informal caregivers were married females in their mid-fifties. Higher educated people were slightly overrepresented in the sample and 37% of the respondents were employed. The distribution of happiness scores (Wi) in the sample of informal caregivers ranged from 0 to 100, averaging 61 (see Table 1). Most happiness scores were in the range between 50 and 80;

Discussion

It has been argued repeatedly that broader effects of health care interventions should be incorporated in economic evaluations. This holds for both welfare effects in patients (apart from health) and broader effects on significant others. At least on a theoretical level, one important group of significant others – informal caregivers – is gaining attention, although in practice the group is still often ignored. A broader group of significant others, i.e., family members, is seldom even

Acknowledgement

This study is part of a larger project investigating the broader societal benefits of health care, which was financially supported by Astra-Zeneca, GlaxoSmithKline, Janssen-Cilag, Merck and Pfizer BV. The researchers were free in study design; collection, analysis and interpretation of data as well as in writing and submitting the manuscript for publication. The views expressed in this paper are those of the authors. We are grateful to Susan MacDonald for her editing of this paper.

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