Vivre avec un proche malade : évaluation des dimensions positive et négative de l’expérience des aidants naturels

Abstract

The growing prevalence of chronic diseases and the greater reliance on outpatient care have shifted the demands from professional caregivers towards natural caregivers. Patients and their family members are based in their homes with complicated therapies to administer. Since a natural caregiver is a key to home care, if the burden becomes too great, the home care support may be threatened. Subjective burden aims to refer to the embarrassment or role overload that may be experienced when giving care at home. Caregivers can experience an alteration in their psychological and physical health due to the new situation. Health care professionals need to be aware of these problems, and they need instruments to assess the impact on the natural caregivers. There has been a growing interest on the part of researchers over the past 30 years in exploring and in developing methodologically sound instruments to measure the caregiving experience. Researchers and clinicians involved in these projects have come from a wide spectrum of medical and psychological domains, including psychiatry, gerontology, psycho-oncology, and somatic medicine. A number of instruments may be appropriate, but while many of these instruments have individual strengths and weaknesses two instruments deserve to be recommended. More specifically, one of these is Given and Given's Caregiver Reaction Assessment (CRA) which was correctly developed and tested, and contains the most areas of interest. The authors are experts in the field, and their instrument has been used satisfactorily by other researchers. The CRA was developed and tested in a study conducted among caregivers of patients with various disorders and this study revealed excellent psychometric properties. The original English version of the CRA was translated into French by six researchers. Each made his own translation. These translations were compared and a consensus was reached for each of the 24 items. A professional translator retranslated the French version into English and a discussion on minor differences led to the final version of the French CRA. The translated CRA is expected to have the same structure as that found for the original instrument or other translated forms (Nijboer et al., 1999). This article addresses the construct validity of the CRA in a multicenter study among partners of chronic disease patients suffering from depression, anxiety disorder, type 2 diabetes, multiple sclerosis, Alzheimer disease, polyarthritis, alcohol dependence, hemiplegia, muscular distrophy ( n = 174). The partner was defined as a relative or person identified by the patient as a partner, and who resided in the patient's household. The construct validity was thus confirmed. More specifically the CRA aims to assess the caregiver experience with respect to five domains of the caregiver's lives. The CRA contained five meaningful factors explaining 64% of the total variance. The five dimensions of caregiver reactions were identified through exploratory factor analysis: impact on disrupted schedule, financial problems, lack of family support, health problems and the impact on self-esteem. The strongest correlations between CRA scales were found for the subscales of disrupted schedule and health problems. To assess the construct validity of the CRA subscales, a measure of subjective burden among informal caregivers (Zarit et al., 1984) was included in the study. The correlations between the CRA subscales and the Zarit scale vary (−0.11 < r < 0.67). The strongest correlations with the Zarit scale were found for the subscales of health problems and disrupted schedule. The lowest correlations were found for the subscales of impact on self-esteem ( r = −11) and financial problems ( r = 0.14). These two negative subscales of the CRA were unrelated or only slightly related to subjective burden as measured with a unidimensional instrument. Reliability analyses showed that Cronbach's alpha's varied between 0.75 and 0.85 for the subscales, indicating sufficient internal consistencies. The French form of the CRA proves to be a reliable and valid instrument for assessing both negative and positive reactions to caregiving among partners of patients with chronic diseases. In conclusion, the CRA seems to be a good option for studying the subjective, multidimensional, negative and positive experiences of caregiving among caregivers of chronically ill patients.