Informal caregivers of patients with disorders of consciousness: experience of ambiguous loss.

PRIMARY OBJECTIVE: This study aimed at better understanding of the complex psychological process underlying the demanding situation of taking care of a relative with disorder of consciousness (DOCs). RESEARCH DESIGN: This is a qualitative study based on the grounded theory constant comparative method. METHODS AND PROCEDURES: Narratives of informal caregivers were collected through in-depth interviews with a psychologist. A three-step coding scheme was applied: coding of narratives to label the specific contents; organization of codes into sub-categories and categories; and theoretical coding to describe the relation between categories. MAIN OUTCOMES AND RESULTS: Twenty informal caregivers participated in one in-depth interview between December 2011 and May 2012. Four major themes emerged: Another person with past in common; Losing and finding myself; Old and new ways of being in relationship; and Dealing with concerns. These themes represent caregivers' efforts to deal with the situation in which their relative is at the same time present and absent. The core salient feature emerging from all these themes is the experience of ambiguous loss. CONCLUSIONS: Features of ambiguous loss that emerged in this study could guide clinicians' interventions to support adjustment of caregivers of patients with DOCs.

Do diagnostic differences between vegetative state and minimally conscious state patients correspond to differences in functioning and disability profiles? Results from an observational multi-center study on patients with DOC.

BACKGROUND: Patients in vegetative (VS) and minimally conscious state (MCS) have different degrees of consciousness recovery but both display severe levels of disability. AIM: To describe and compare VS and MCS patients' functioning and disability according to ICF model (International Classification of Functioning, Disability and Health). DESIGN: Observational cross-sectional multi-center study involving sixty-nine Italian centers. SETTING: Patients recruited in post-acute, long-term care facilities and at home in Italy. POPULATION: Adult patients in VS and MCS. METHODS: ICF Functioning profiles were completed and, for each ICF chapter and domain, extension and severity indexes were developed. Indexes have been compared between VS and MCS patients with Mann Whitney U test. Descriptive statistics have been applied to describe the most relevant categories that had a percentage of missing below 25% and that were reported as a problem by at least 50% of patients. RESULTS: A total of 564 patients were enrolled: 396 in VS (mean age 56.8), 168 in MCS (mean age 54.2). Fifty-eight ICF categories were selected: of them, 24 were from Activity and Participation (A&P). Few differences between patients in VS and MCS were reported in Body Functions (BF), mostly referred to mental, sensory and digestive functions; among A&P, differences were found only in learning chapter. For VS patients less environmental barriers were reported than MCS patients. CONCLUSION: Patients in VS and MCS have similar functioning and disability profiles and similar needs thus levels of care and assistance should not be different across the two conditions. CLINICAL REHABILITATION IMPACT: An ICF-based methodology of data collection enables to describe VS and MCS patients' functioning and disability: this is helpful when rehabilitation programs based on the features of single patients with DOC need to be planned.