Review
Tools for measuring the impact of informal caregiving of the elderly: A literature review

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Abstract

Objectives

(1) Describe available tools to assess the impact of informal caregiving of home-dwelling elderly, (2) identify an acceptable and appropriate tool for a study aiming at the evaluation of the impact of innovative projects for care and support of care for elderly at home, on their main informal caregiver and (3) find a definition of ‘main informal caregiver’.

Study design

Literature review by searches of the following electronic databases: MEDLINE, CINAHL, EMBASE, using firstly keywords and exclusion criteria, then citations and reference search.

Results

This review has identified 105 scales assessing the impact of informal caregiving of the elderly. Those scales were described in terms of characteristics of the care receiver population, content and psychometric properties. Most retrieved scales are intended to measure the impact of caregiving on caregivers’ health of elderly with dementia (n = 49), overall elderly (n = 21), cancer patients (n = 7), chronically ill patients (n = 7), psychiatric patients (n = 7) and stroke patients (n = 3).

Dimensions of the impact of caregiving were classified into its positive (n = 34), negative (n = 55) or neither positive nor negative (n = 16) consequences on the informal caregiver's health. Internal consistency varied from 0.48 to 0.99 and in half of the cases (n = 52), construct validity was reported. Scales comprised 1–200 questions. The Zarit Burden Interview (ZBI-12) was selected for the study and an operational definition of the concept of “main informal caregiver” was constructed.

Conclusion

This review identified a large number of scales that can be used to assess the impact of caregiving, viewed through different dimensions. The Zarit Burden Interview can be a useful tool for researchers and clinicians due to its user-friendliness, extensively validation and international use, making comparisons between groups possible. Despite the fact that only the original version of each scale was selected, this inventory should be a useful tool for intervention studies and even clinicians work.

Introduction

In a context of rapidly growing frail elderly population, informal caregiver's role is becoming an important issue at a political, sociological and economic level. One of the reasons is that informal caregiving has a positive cost-efficacy balance. For example, a US study in 2009 (data from 2007) showed that the cost of caregiving by an informal caregiver could save $ 257 billion yearly for government or institutions (National Alliance for Caregiving, 2009). Massachusetts’ data from 2007 (Albelda et al., 2009) described that residents from this US state perform 24.9 million hours a day of unpaid care work (the equivalent of 3.1 million full-time workers, for a total population of 6.4 million (annual estimates for the population of Massachusetts; Mass.gov, 2010).

Besides economical reasons, the health of caregivers and their elderly care-receivers is a major concern. Indeed, there is not only evidence of the positive impact of caregiving on the health of caregivers and care-receivers (i.e. quality of relationships, feelings of accomplishment and meaning of the caregivers’ role; Carbonneau et al., 2010, Farfan-Portet et al., 2007), but also evidence of a negative impact on their health.

Firstly, caregiving may provoke caregivers suffering and ill-health. This consequence on health has been mainly studied for caregivers of patients with dementia, stroke and cancer (Goldstein et al., 2004, Schneider et al., 2002, Visser-Meily et al., 2004). This negative impact of caregiving reflects at several levels (Powers et al., 2002): when caregivers stay without assistance and help they are more likely to show stress symptoms (Joling et al., 2008). Caregiving might also alter physical health (Rose-Rego et al., 1998, Schulz et al., 2009), increase anxiety, social isolation (Sherwood et al., 2005), alter interpersonal relationships (Bodnar and Kiecolt-Glaser, 1994), provoke lesser well-being (Rose-Rego et al., 1998, Tessler and Gamache, 1995), lead to depressive symptoms (Sherwood et al., 2005), and even premature death (Schulz et al., 2009, van Exel et al., 2004).

Secondly, the negative impact of caregiving can contribute to elder abuse (Service Public Fédéral Santé Publique, 2004), as caregivers become too stressed by the burden and the inadequacy of the help they received for themselves.

Thirdly, the negative impact that the caregiver perceives may play a determinant role in the decision to institutionalize the elderly (Bedard et al., 2000, Pearlin et al., 1990).

Since the 1980s, there has been a growing interest in documenting the caregiving experience, as shown by the variety of instruments intended to measure caregiver variables. Among those, the psychological, emotional and physical stress related to the caregiving experience, as well as caregivers’ needs related to performing their caregiving tasks has been widely investigated. These instruments tend to measure the caregiver burden, needs and quality of life. An overview of validated instruments described in scientific literature can be useful for the researcher or the clinician wishing to investigate the impact of caregiving on the informal caregiver.

The main objective of this article was to identify available tools to assess the impact of home-dwelling elderly people's care on informal caregivers. This research took place during a larger study, in which the impact of innovative interventions had to be assessed through several outcomes (i.e. delaying institutionalization, maintaining or improving the functional status and perceived quality of life of the elderly, impact on the main informal caregiver and cost evaluation). In this context, innovative interventions were interventions that were not reimbursed by the compulsory Belgian health care insurance, NIHDI (National Institute for Health and Disability Insurance). These interventions were mainly nursing night care, coordination of care, speech therapy, occupational therapy and psychosocial support at home. The aim of the innovative interventions was to maintain frail elderly at home. One of the measured outcomes was the impact of a given intervention on the main informal caregiver. To measure that impact, we aimed to identify a validated tool that is easy to use (short) and extensively studied, to allow (inter)national comparisons on effectiveness of interventions targeting informal caregivers’ health. As part of that objective, we wanted also to clarify the meaning of the concept of “main informal caregiver”, by analyzing the description provided by the articles found during the literature review that would be performed for identifying the scale.

Section snippets

Methods

In order to fulfill our objectives of making an inventory of validated tools, finding an appropriate one for our study purposes and, eventually, find a definition of ‘main informal caregiver’, we performed a literature review in spring 2010.

Description of available tools to assess the impact of informal caregiving of home-dwelling elderly

As a result of the literature review, we found 105 validated scales meeting the search criteria. They are summarized in Table 2, Table 3, Table 4.

Among the themes presented in Table 2, Table 3, Table 4, we chose to present the number of items of the scale (which provides an idea of the duration of the interview required for the assessment). The number of questions rated from 1 (self-rated burden scale, van Exel et al., 2004) to 200 (Family Experiences Interview Schedule, Tessler and Gamache,

Discussion

This paper aimed to (1) provide an overview of available scales measuring the impact of caregiving on elderly's caregivers and (2) identify in the literature, a validated, user-friendly and well-studied scale for assessing the impact of care for the main caregiver through an extensive literature research. By doing so, we were confronted by the need to clarify the meaning of the concept of ‘informal caregiver’ (Table 6).

The present literature review provides an extensive overview of the used

Study limits

As described in Section 2, only originally designed scales were included in this article. The references included in Table 2, Table 3, Table 4 described only the original scale and the population in which it was validated, omitting the further validation processes the scale underwent in different populations, settings, or the sometimes more concise forms (‘short-forms’) and more in-depth validations, according to most recent validation standards. In our view, this can be easily addressed

Conclusion and implication for future research

Our literature review identified a large number of scales that can be used to assess the impact of interventions aiming at improving elderly people's caregivers’ health. Despite a lack of accurate definitions of concepts and study population, this inventory of scales should be a useful tool for intervention studies and even clinicians work.

Researchers might be helped by the availability of updated databases, listing validated scales according to their outcome measures. In addition, research

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