[Perception and opinions on the right of choice in medical field: what caregivers teach us on the communication]. / Percezione e opinioni sul diritto di scelta in campo medico: cosa ci insegnano i caregiver sulla comunicazione.

The aim of the present study was to analyse caregivers' perceptions and opinions concerning medical information and advance directives. Fifty-one subjects (mean age 63.07+/-12.2) were enrolled and filled in some questionnaires: the Family Strain Questionnaire (FSQ), the SF-12 and a specifically assembled questionnaire which we named Communication and Consent (CCQ). Correlations were found between FSQ factors, which refer to caregiving-related problems, and SF-12, which refers to the self-perception of mental and physical health. The subjects who resulted emotionally distressed referred to care for more critical patients and that they had not received sufficient attention by physician at the time of diagnosis. Self-determination and decision-making resulted inversely correlated to caregivers' age and education. In general, caregiver's role itself influences attitudes towards medical information and advanced directives. The study also indicates that health professionals have to pay more attention to the relationship than they use to do, trying to understand which kind of emotional sound a technical term may produce for the patients and their caregivers.

Caregiving and Parkinson's disease.

Relatively little has been published in the international literature concerning the caregiving-related problems associated with Parkinson's disease. We therefore undertook two exploratory studies that have allowed us to identify the needs and specific problems perceived by such caregivers in both qualitative and quantitative terms.

A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers.

We recruited 50 cancer patients and their caregivers with the aim of extending our knowledge of emotional, personality and psychosocial variables, and comparing their reciprocal experience of the disease. The patients and caregivers were administered four of the questionnaires included in the Cognitive Behavioral Assessment 2.0, the Family Strain Questionnaire and the Satisfaction with Life Scale. The patients were characterised by significantly greater emotional disturbances than their caregivers, who were emotionally stable and had a relatively low level of perceived strain despite their high level of hostility and state anxiety. The intra-scale correlations highlighted the fact that the perception of distress depends on neuroticism and the presence of anxiety and depression (which are themselves known to be connected with neuroticism). The everyday life of the caregivers seemed to be characterised by restricted social relationships and interests; a relatively large proportion also declared that they had practical problems related to disease management, economics and some embarrassing and stigmatic aspects of the disease itself.

[Assessment of problems associated with caregiving: the family strain questionnaire]. / Assessment delle problematiche caregiving-correlate: il family strain questionnaire.

Our study concerns a questionnaire for the evaluation of caregiving-related problems: the Family Strain Questionnaire. The questionnaire, which is composed by a structured interview and 47 dychotomous items, was administered to 409 caregivers of patients with different kinds of chronic diseases. Factorial analysis shows a structure of 5 factors named: emotional strain, social involvement, knowledge of the disease, family relationships and thoughts about death. The FSQ is sensible in discriminating different groups of caregivers. This paper presents the psychometric properties as well as the clinical advantages evidenced by the FSQ.

Caregiver strain associated with tracheostomy in chronic respiratory failure.

STUDY OBJECTIVES: The aim of this study was to evaluate the psychological and psychosocial impact of tracheostomy on the caregivers of patients who have undergone tracheostomies. SETTING: Rehabilitation facility. PARTICIPANTS: Sixty-three lay caregivers of inpatients and outpatients with various underlying diseases who have undergone tracheostomies. METHODS: At the beginning of the study, the 63 caregivers completed a previously validated questionnaire designed to assess the problems related to caring for patients with chronic diseases. Approximately 1 year later, 40 of the 63 caregivers completed the same questionnaire a second time. The results were analyzed statistically in order to investigate the caregivers' perceptions of the factors associated with their own particular situation. RESULTS: The answers of the 40 subjects who completed the questionnaire twice revealed the existence of perceived strain persisting over time, which was greater in female caregivers and in those caring for patients who had had a tracheostomy for < 14 months. The younger caregivers (age < 59 years) and those caring for patients receiving nocturnal ventilation expressed a continuing need for information about the disease. Finally, the caregivers said that they, as well as their patients led very restricted personal lives. CONCLUSIONS: Tracheostomy causes a substantial amount of caregiver strain, which should be taken into account when deciding on any treatment plan.

Patients in a persistent vegetative state: caregiver attitudes and reactions.

OBJECTIVES: This exploratory study investigated the problems encountered by caregivers of long-stay hospital patients in a persistent vegetative state. MATERIAL AND METHODS: Sixteen primary caregivers completed questionnaires designed to assess their personality, psychophysical distress, coping strategies and caregiving-related problems. RESULTS: Males showed a higher level of emotional distress and neuroticism than females. All of the caregivers used situation-oriented coping strategies less over time. had apparently unsatisfactory family relationships, and their emotional distress increased with disease duration. The thoughts of the possible death of the patient were associated with anxiety and depressive symptoms. The caregivers' everyday lives were characterized by limited social relationships, and indoor and outdoor interests. CONCLUSION: Our study underlines the importance of psychosocially assessing PVS patient caregivers, who are often alone in coping with a irreversible situation. It also introduces a questionnaire (FSQ2) that seems to be sufficient to assess the caregiving-related problems.