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An Indian Adaptation of the Involvement Evaluation Questionnaire: Similarities and Differences in Assessment of Caregiver Burden

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Introduction

Caregiver burden has been defined by Platt as "the presence of problems, difficulties or adverse events which affect the life (lives) of the psychiatric patient's significant others (e.g. members of the household and / or the family)". (1) Over the past 5 or 6 decades, research on caregiver burden has progressed from simple enumeration of problems faced to more elaborative and conceptually driven exploratory studies. (2) Newer conceptual models such as the stress-appraisal-coping paradigm, the role theory, and the systems approach have been applied to examine the experience of caregiving and different facets of the caregiver burden. (3)

The number of different instruments to assess caregiver burden has also increased several folds in recent years. While earlier reviews on this subject had identified about 2 dozens of such scales, (1,3) a recent systematic review yielded 74 different instruments with adequate psychometric properties, which had been used to measure caregiver burden. (4) These scales differed in terms of their format (interview vs. self-report), purpose (generic vs. specific scales for individual disorders), and content (covering all areas of burden vs. focusing on 1 area, e.g. economic burden). (1,3-5) Although many of these scales have been translated into other languages, 2 of them, viz. the Zarit Burden Interview and the Involvement Evaluation Questionnaire (IEQ) have undergone the most extensive testing for their cross-cultural applicability. (4,6-8) The Zarit Burden Interview is a self-report scale that has more commonly targeted caregivers of patients with dementia, while the IEQ has more often been used in caregivers of those with schizophrenia or mood disorders. (4,9)

India has a long history of burden research, with several studies carried out among family caregivers in different parts of the country at various points in time. (10) Devised by Pai and Kapur, (11) the Family Burden Interview (FBI) Schedule has been the instrument most commonly used to assess caregiver burden. This scale was based on the traditional distinction between objective and subjective burden, wherein objective burden refers to the objective / tangible consequences of the patient's illness on the family, while the caregiver's own perception of the impact of caring is referred to as subjective burden. (12) However, the categorisation of burden into objective and subjective aspects has been criticised on the grounds that these overlapping dimensions are difficult to operationalise and assess. (13) Moreover, the primary focus of the FBI Schedule is on objective burden, and its assessment of subjective burden is relatively inadequate. (1) Finally, although the FBI Schedule has been used in developing countries quite often, its psychometric properties have seldom been examined. (1,14,15)

In contrast to the FBI, the IEQ is based on the stress-appraisal-coping model of caregiver burden, which is one of the dominant paradigms for conceptualising such burden. (4,7,9) The IEQ was developed to assess caregiver burden or the 'consequences of caregiving' (a more neutral term for burden preferred by the authors). It relies on the caregiver's perceptions to assess burden without distinguishing between its objective and subjective aspects. The IEQ has been extensively tested and has proved to be a comprehensive, conceptually valid, and reliable means of determining the consequences of providing care for a mentally ill family member. (7,9) The instrument has also been translated into several European languages. Cross-cultural applicability of some of these versions was examined in 5 different European sites as a component of the European Psychiatric Services: Inputs Linked to Outcome Domains and Needs (EPSILON) study. (7,9,16) Although the internal consistency, test-retest reliability, and factorial validity of the instrument were satisfactory in a majority of these sites, (9) the results often varied (possibly due to sociocultural differences). …