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Leonardi M.,Neurological Institute Carlo Besta IRCCS Foundation | Chatterji S.,World Health Organization | Koskinen S.,Finnish National Institute for Health and Welfare | Ayuso-Mateos J.L.,Institute Salud Carlos III | And 10 more authors.
Clinical Psychology and Psychotherapy | Year: 2014

COURAGE in Europe was a 3-year project involving 12 partners from four European countries and the World Health Organization. It was inspired by the pressing need to integrate international studies on disability and ageing in light of an innovative perspective based on a validated data-collection protocol. COURAGE in Europe Project collected data on the determinants of health and disability in an ageing population, with specific tools for the evaluation of the role of the built environment and social networks on health, disability, quality of life and well-being. The main survey was conducted by partners in Finland, Poland and Spain where the survey has been administered to a sample of 10800 persons, which was completed in March 2012. The newly developed and validated COURAGE Protocol for Ageing Studies has proven to be a valid tool for collecting comparable data in ageing population, and the COURAGE in Europe Project has created valid and reliable scientific evidence, demonstrating cross-country comparability, for disability and ageing research and policy development. It is therefore recommended that future studies exploring determinants of health and disability in ageing use the COURAGE-derived methodology. © 2013 John Wiley & Sons, Ltd.

Hartley S.,University of East Anglia | Hartley S.,University of Sydney | Hartley S.,London School of Hygiene and Tropical Medicine | McArthur M.,University of East Anglia | And 9 more authors.
PLoS ONE | Year: 2014

Background: People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders. Objectives: To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson's disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors. Methods: Seventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders. Results: First-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups. Conclusions: The strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that 'a great deal can be done' to improve the lived experience of persons with brain disorders when medical interventions are exhausted. © 2014 Hartley et al.

Giovannetti A.M.,Neurological Institute Carlo Besta IRCCS Foundation | Covelli V.,University eCampus | Sattin D.,Neurological Institute Carlo Besta IRCCS Foundation | Leonardi M.,Neurological Institute Carlo Besta IRCCS Foundation
Acta Neurologica Scandinavica | Year: 2015

Objective: To evaluate quality of life (QoL) and its predictors, psychological burden and level of perceived social support in caregivers of patients with disorder of consciousness. Materials & Methods: World Health Organization Quality of Life-Bref (WHOQOL-BREF), State Trait Anxiety Inventory-Y (STAI-Y), Beck Depression Inventory (BDI-II), Prolonged Grief Disorder Questionnaire, Coping Orientations to Problem Experiences, State-Trait Anger Expression Inventory-2 (STAXI-2), and the Medical Outcome Study Social Support Survey (MOS-SSS) were administered. One-sample t-tests were performed to compare WHOQOL-BREF, STAI-Y and STAXI-2 mean scores to the respective normative sample (NS). Pearson correlation was calculated between time dedicated to patient's care, WHOQOL-BREF, BDI-II, STAI-Y and MOS-SSS scores. Hierarchical multiple regression analyses were performed to evaluate which variables have predictive power on QoL. Results: A total of 129 caregivers, 68.2% female, mean age 52.8 years, were enrolled. Three WHOQOL-BREF domains were significantly lower. Anxiety and anger were in line with NS. 28.7% of the sample reported high level of depressive symptoms; 20.9% satisfied the prolonged grief disorder criteria. No differences emerged between caregivers and chronic ill patients' scores at MOS-SSS. STAI-Y, BDI-II and WHOQOL-BREF scores positively correlated. MOS-SSS domains inversely correlate with BDI-II scores. BDI-II results the most relevant predictor of QoL. Conclusions: Study results provided innovative information about caregivers' poor QoL, difficulties in social support and high levels of burden. Time dedicated to care is not strictly related to burden, while social support perceived is highly associated with caregivers' depressive symptoms that are strong predictor of poor QoL. Supportive intervention able to integrate psychological, social and environmental levels is needed. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Giovannetti A.M.,Neurological Institute Carlo Besta IRCCS Foundation | Pagani M.,Neurological Institute Carlo Besta IRCCS Foundation | Sattin D.,Neurological Institute Carlo Besta IRCCS Foundation | Covelli V.,Neurological Institute Carlo Besta IRCCS Foundation | And 3 more authors.
The Scientific World Journal | Year: 2012

Caring for children in vegetative state (VS) or minimally conscious state (MCS) challenges parents and impacts on their well-being. This study aims to evaluate caregivers' health condition, coping, anxiety and depression levels, and how these issues relate to children's disability. 35 children with VS and MCS were administered the disability rating scale (DRS) and 35 caregivers completed the Coping Orientations to Problem Experiences, Short Form-12, Beck Depression Inventory, and the Spielberger State-Trait Anxiety Inventory-Y. Children were mainly males (68.6%), hosted at domicile (77.1%), and diagnosed with VS (60%), with anoxic aetiology (45.7%). Caregivers were mainly mothers (85.7%), married (82.9%), and housewives (51.4%); 60% declared financial difficulties, and 82.9% provided full-time assistance. 57.2% reported depressive symptoms, poor mental health, and high level of state and trait anxiety. "Problem-oriented" (P 0.001) and "emotional-oriented" (P 0.001), were more adopted than "potentially dysfunctional" ones. DRS scores (mean = 22.0; SD = 1.9) did not significantly correlate to any psychological measure. Rehabilitative programs for children with SV and SMC should also provide interventions on surrounding systems: improving the network of psychological support and social assistance may decrease the burden of caregivers and, in turn, improve caring abilities and children quality of life. Copyright © 2012 A. M. Giovannetti et al.

Raggi A.,11 Health | Schiavolin S.,11 Health | Leonardi M.,11 Health | Antozzi C.,Neurological Institute Carlo Besta IRCCS Foundation | And 3 more authors.
Disability and Rehabilitation | Year: 2014

Purpose: To develop a preliminary version of a disease-specific, patient-reported disability assessment instrument for myasthenia gravis (MG) based on the International Classification of Functioning, Disability and Health (ICF): the MG-DIS. Methods: Five consecutive steps were taken: literature review and selection of outcome measures; linking of measures' concepts to ICF categories and selection of those reported by 30% of the instruments; comparison of linking results with a previous selection of MG-relevant ICF categories; patient interview; development of questions based on retained ICF categories. Results: Thirty-one papers containing 21 different outcome measures were found: 13 ICF categories were linked to them. Fifty-five items were retained after the comparison with the list of MG-specific categories, and were used for patient interview. Thirteen interviews were conducted before saturation of data was reached and the final list was composed of 42 categories: based upon them, 44 questions were developed. Conclusions: The preliminary version of the MG-DIS contains more information than each single MG-specific tool, in particular, for the component of environmental factors. Further research is needed to test its psychometric properties.Implications for RehabilitationIt is important that patient-reported outcome is incorporated in MG patient's assessment.MG features can be evaluated with ICF-based methods.An MG-specific patient-reported disability assessment instrument can be used to monitor changes of functioning in patients on MG-specific treatments, and can be used in clinical trials as outcome measure. © 2014 Informa UK Ltd.

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