Illness denial questionnaire for patients and caregivers.

PURPOSE: Interest in assessing denial is still present, despite the criticisms concerning its definition and measurement. We tried to develop a questionnaire (Illness Denial Questionnaire, IDQ) assessing patients' and caregivers' denial in relation to their illness/disturbance. PATIENTS AND METHODS: After a preliminary study, a final version of 24 dichotomous items (true/false) was selected. We hypothesized a theoretical model with three dimensions: denial of negative emotions, resistance to change, and conscious avoidance, the first two composing the actual Denial and the last representing an independent component of the illness denial behavior. The IDQ was administered to 400 subjects (219 patients and 181 caregivers) together with the Anxiety-Depression Questionnaire - Reduced form (AD-R), in order to assess concurrent validity. Confirmatory factor analysis (CFA), internal consistency indices (Cronbach's α and McDonald's ω), and test-retest analysis were performed. RESULTS: CFA and internal consistency indices (Cronbach's α: 0.87-0.96) indicated a clear and meaningful three-factor structure of IDQ, for both patients and caregivers. Further analyses showed good concurrent validity, with Denial and its subscale negatively associated with anxiety and depression and avoidance positively associated with anxiety and depression. The IDQ also showed a good stability (r from 0.71 to 0.87). CONCLUSION: The IDQ demonstrated good psychometric properties. Denial of negative emotions and resistance to change seem to contribute to a real expression of denial, and conscious avoidance seems to constitute a further step in the process of cognitive-affective elaboration of the illness.

Emotional reactions and practical problems of the caregivers of hemodialysed patients.

BACKGROUND: The international literature consistently shows that the psychosocial outcomes of the informal carers (caregivers) of chronically ill patients are influenced by factors such as personality traits and perceived social support, but few studies have investigated these variables in the caregivers of hemodialysed patients, and the reciprocal experience of chronicity. METHODS: Fifty hemodialysed patients and their principal caregivers were recruited. They were administered specific questionnaires to evaluate their emotional stability and anxious/depressive reactions, the perceived burden related to the patients' condition, the quality of their family relationships and knowledge of the disease, and the degree of satisfaction with their lives. The study design was correlational and comparative. The data were analysed using Student's t test and Pearson's correlation. RESULTS: The patients were significantly more anxious and depressed than their caregivers, and had a more negative perception of their family relationships; they also had significantly higher neuroticism scores. Although the caregivers showed good emotional stability and a relatively low level of perceived burden, they stated that their daily lives were not very interesting and involved few social contacts. Twenty-five percent of them declared that they had financial problems; twelve percent also said they had to face problems of disease-related stigma and embarrassment. CONCLUSIONS: The results suggest that emotional stability is an important psychological determinant of perceived distress among the caregivers of hemodialysed patients. Assessing this personality trait and the reciprocal experience of chronicity in patients and caregivers may help nephrology teams identify subjects at major psychological risk, and to select the appropriate psychological support.

Alzheimer's disease: usefulness of the Family Strain Questionnaire and the Screen for Caregiver Burden in the study of caregiving-related problems.

OBJECTIVES: The economic and psychosocial impacts of Alzheimer's disease (AD) on caregivers are so well documented that they have stimulated socioeconomic regulations that are international in scope. In Italy caregivers have the right to receive economic and psychosocial aid. However, to distribute such aid the needs of caregivers, must be properly assessed. Here we have attempted to integrate two measures, the Family Strain Questionnaire (FSQ) and the Screen for Caregiver Burden (SCB), in order to evaluate caregiver needs that are both general and specific to AD. MATERIAL AND METHODS: The SCB and FSQ were administered to 91 primary caregivers of home-based patients with AD. Caregivers also were asked to rate the activities of daily living of their care recipients, the latter of which were administered the Mini-Mental State Examination. RESULTS: The SCB and FSQ provide different, but complementary assessments of the needs of AD caregivers. The SCB identifies situations that are potentially stressful to AD caregivers and the FSQ identifies the needs of specific caregivers (e.g. men vs women, spouses vs children, unemployed vs employed). CONCLUSION: Together these measures may help government agencies to assess caregiver needs beyond those assessed by each individual measure.