The inclusion of positive aspects of caring in the Caregiver Strain Index: Tests of feasibility and validity
Introduction
Research into the experience of providing unpaid care has traditionally focussed on the negative aspects of caring, commonly summarised as carer ‘burden’ (Zarit et al., 1980, Grad and Sainsbury, 1963, Robinson and Thurnher, 1979). During the 1980s, caring research was placed in the broader stress paradigm. Research highlighted how factors such as: reactions to caring, coping mechanisms, social support and satisfactions from caring could mediate the stresses of caring (Lawton et al., 1989, Pearlin et al., 1990). This research also helped to establish the inter-relationship of positive and negative aspects of caring in determining the well-being of carers.
Positive aspects of care (PACs) are an umbrella term referring to a variety of feelings about, and reactions to, caring. PACs have been described in a number of different ways: gain, satisfaction, rewards, pleasures, positive appraisal, enjoyment, growth, meaning and uplifts (Kramer, 1997). Studies in different countries have shown that the majority of carers can identify at least one PAC (Bamford et al., 1998, Cohen et al., 2002, Brouwer et al., 2005, Ribeiro and Paul, 2008). PACs can have two important effects on strain: in ‘main effect’ models they are assumed to directly contribute to positive outcomes, while in ‘stress-moderating’ models they are assumed to reduce the impact of negative stressors (Miller et al., 1995). Therefore, as Kramer (1997) has noted, failing to pay attention to PACs may lead to skewed perceptions of the caring experience.
Some of the most commonly used outcome measures for carers were developed with a focus on the negative aspects of caring (Zarit et al., 1980, Robinson, 1983). One such measure, the Caregiver Strain Index (CSI) (Robinson, 1983) is a commonly used outcome measure for carers and has been used in cross-sectional surveys and intervention trials (e.g. Donnelly et al., 2004, Ferrell et al., 1995, Wade et al., 2003). The CSI comprises 13 items referring to the stressors in caring, each completed yes/no, with the yes answers summed to give an overall strain score. This simple sum score is particularly advantageous when it is only possible to insert a single, simple outcome measure for carers into the study protocol, for example, trials when the primary focus is the patient. Recent tests have found the CSI to be feasible and valid (Van Exel et al., 2004), with good reliability (Post et al., 2007). Over time, a number of modifications have been made to the CSI. These include the addition of disease-specific questions (Ferrell et al., 1995), the omission of undesired questions (Gunnell et al., 2000) and the introduction of a third response category (Thornton and Travis, 2003, van den Heuvel et al., 2000). One aspect of the CSI that has not been modified or widely discussed is the focus on the negative aspects of caring.
This paper reports a study, investigating the feasibility of including ‘positive’ items in the Caregiver Strain Index. The intention was to retain the concise, feasible and well-validated properties of the CSI, with additional positive items to reflect the importance of positive factors in mediating carer strain. This paper reports the properties of the positive items and the new composite measure, the ‘CSI+’. Evidence is presented on the: (i) completion rates of the items and scale; (ii) association between the items and scales and characteristics of the carer, recipient and caring situation; (iii) correlation between items and scales and (iv) exploratory factor analysis of the scale.
Section snippets
The ‘CSI+’ questionnaire
The positive aspects of caring used in this study were selected from a review of the international literature of instruments focused on carer outcomes. The review is reported elsewhere (Brouwer et al., 2006). For the review, two researchers scanned a list of instruments: the Caregiving Appraisal Instrument (Lawton et al., 1989); Caregiver Burden Inventory (Novak and Guest, 1989); Caregiver Burden Scale (Montgomery et al., 1985); Cost of Care Index (Kosberg and Cairl, 1986); Caregiver Hassles
Descriptive statistics for the sample
Table 2 shows the descriptive characteristics of the carers and the care recipients in the sample. The sample contained a high proportion (60%) of strained carers, defined by a CSI score of 7 or more (Robinson, 1983). On average, carers and recipients were around 60 years old, although this figure masked wide variation (particularly in the age of care recipients). Many care recipients were in very poor health, with nearly half the sample having severe problems in the “usual activities”
Discussion
Research accumulated since the development of the Caregiver Strain Index (CSI) suggests that positive appraisal and reactions to caring play an important role in mediating stress from caring. This study incorporated five positive items, sourced from the literature, alongside the CSI. The positive items did not reduce the feasibility of the CSI questionnaire and the resulting CSI+ measure showed evidence of construct and convergent validity. Exploratory analyses revealed a number of
Conclusion
Positive aspects of care appear to enhance the understanding and measurement of carer strain. Although the original CSI is a feasible and largely valid measure, it does not relay information about the positive aspects of care. This study finds that adding five items representing positive aspects of care adds clinically relevant information to what is obtained from the original CSI scale, without harming its content, structure, feasibility or validity or being very demanding on respondents;
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