1,721,260 research outputs found
Daily Life and Planning for the Future of Ageing People with Down Syndrome: Results from a National Study on Caregivers
No full textBackground: Limited research concerns the study of continuity in the future of the physical and social status of elderly people with DS that is when people who take care of them will not be there anymore (“after we have gone”). Objective: From a biopsychosocial perspective, to investigate the daily life of ageing people with Down Syndrome over 45 years old in order to identify the most important issues in better planning for their future. Methods: A cross-sectional Italian national study was carried out. An ad hoc questionnaire was administered to formal and informal caregivers of aging people with Down Syndrome. Results: 136 family members and health professionals were involved. Most of the people with Down Syndrome live at home, attend a daily center and do many activities. Most of them had never worked and she/he is not at all autonomous. 25% of caregivers declared that, nowadays, there is not planning for the future, and 30.9% of participants who planned their future collected information when it occurred (e.g. when the parents pass away). Conclusions: The aging of people with DS requires attention to the planning of their future. In order to better plan, it is necessary to avoid programming “in emergency”, but for time, keeping in mind of the activities developed by the people, their abilities and all of the elements that have allowed them to live well up to a point of their life
Role of disability-case manager for chronic diseases: Using the ICF as a practical background
No full textdisability-case manage
A Pilot Study on Function and Disability of Aging People with Down Syndrome in Italy
No full textAn increased life expectancy of people with Down syndrome (DS) and the occurrence of early aging are now recognized. However, few data exist on functioning and disability profile of early-aging people with DS, which takes into account how health conditions interact with environmental factors. Based on the World Health Organization’s International Classification of Functioning, Disabil- ity and Health (ICF), the authors collected preliminary data describing functioning and disability about early aging from 31 adults with DS aged 45 and older residing in the greater Milan, Italy, area. ICF checklist was used to collect data. Of the 31, 18 were women (mean age = 51.1), all were unmarried, 21 lived with their family, and 23 never worked. Few problems in body functions (e.g., vision and hearing, cognitions) and body structures (e.g., ear and eye structures, cardiovascular, endocrine, and digestive systems, skin structures) were reported. ICF categories within Activity and Participation domain emphasized the facilitating effect of environ- mental factors on activities related to domestic life (e.g., doing housework, acquisition of goods and services, preparation of meals). Within the Environmental Factors domain there are few barriers, mainly with respect to labor services, and very strong facilitating factors, particularly related to product of technology (for personal indoor and outdoor mobility and transportation) and the support of family members. The authors note that the findings can set out premises for further study on aging people with DS and their caregivers at national and international levels
Pain, suffering and some ethical issues in neurosciences research
No full texthe distinction between suffering and pain express the two faces of a disease that influence a patient quality of life. Suffering is a composite phenomenon. It implies moral elements, such as the question that a human being can ask about the sense of life, the worries about himself and his own family; existential issues and ethical components. Suffering can rise not only when pain is not present, but also, sometimes, just when pain is won. We have to avoid to think of the patient’s suffering always as a psychiatric pathology. This is a new and more adapted approach to suffering itself. Pain therapies should respect patient’s personalities and requires a proportional use of the therapy itself. Quality of life, pharmacological pain treatment, informed consent, living will: we have to consider all those issues deeply, starting from the perspective of the pain-suffering distinction
Migraine Outcome Should Not Be Used to Determine Diagnosis, Severity, and Therapy: Moving Towards a Multiparametric Definition of Chronicity
Full text linkChronic migraine (CM) diagnosis is nowadays based on the threshold of 15 headache days/month for three consecutive months, of which at least eight have migraine headache features. In recent years, proposals for reducing the threshold to 8 days/month have been proposed. The sole frequency parameter, however, is partial considering the variability in frequency, pain severity, associated symptoms, such as nausea, osmophobia, and photophobia, and presence of aura, but also the variable response to treatment and the association with several comorbidities. Therefore, in our opinion, a multiparameter perspective has to be taken into account that considers the underlying pathophysiology, in particular the presence of tension-type-like pain, cutaneous allodynia, and reduced pain threshold. A paradigm change in the definition of chronic migraine moves far beyond the mere 8 vs. 15 days/month, but has ethical and practical implications for treatment: should patients be treated with the most effective prophylactic drugs, i.e., monoclonal antibodies (MABs), if they enter into a new definition of CM? How should clinicians deal with treatment escalation towards MABs? What is the role of associated conditions, response to treatments, lifestyle issues, and psychological factors? And, finally, which endpoint should we use to define effectiveness? Is improvement in headache frequency enough, or should we move towards disability, quality of life, or workplace productivity
Ageing of people with Down's syndrome: a systematic literature review from 2000 to 2014
No full textLife expectancy of people with Down's syndrome (DS) has increased considerably, now exceeding 60 years. People with DS start to get old around the age of 45. By referring to the WHO's International Classification of Functioning, Disability and Health (ICF) biopsychosocial perspective, this study aimed to present an up-to-date review of the past 14 years of literature concerning the ageing of people with DS. PUBMED, PsycInfo and the Social Sciences Citation Index were searched for studies published between 2000 and 2014. Studies were selected if they were written in English, focused on people more than 45 years of age with DS, and if terms related to DS and ageing appeared in either the title or the abstract. A total of 30 studies were retrieved and their meaningful concepts were linked to the ICF. In total, 38 ICF categories were identified that were mainly related to intellectual functions (b117) (19%), general metabolic functions (b540) (7.4%), mobility of joint functions (b710), muscle power functions (b730) (4.2%), gait pattern functions (b770) (4.2%) and structure of the brain (s110) (4.3%). Only two studies considered environmental factors, and only one considered the joint analysis of health condition and environmental factors. Data about the ageing of people with DS are predominantly based on medical evaluations and descriptions of their physical impairments. Few attempts have been made towards a comprehensive assessment of elderly people with DS with a joint analysis of their health condition and its interaction with environmental factors
Taking care of patients with disorders of consciousness: Caregivers' burden and quality of life
No full textThe aim of this contribution is to present the main results of several studies that analyzed the burden of caregivers of patients with disorder of consciousness (DOC) and its impact on caregivers' life. First of all, a distinction between the term "formal" and "informal" caregivers is made, and a presentation of "burden" concept is introduced. Analyzing recent literature available on caregiving and burden of informal caregivers of patients with DOC, the authors found a difficulty in identifying a simple and univocal definition of burden concept. The chapter will then describe the main effects of burden on the life of caregivers of DOC patients, considering a multifaceted burden concept. In particular, the authors will report results on an objective dimension of burden (which include pragmatic changes on personal life, such as economic condition, work activities, hobbies, and daily activities) and a subjective dimension. The latter will be described distinguishing between interpersonal level (self-perception in relation to the environment, roles definition, interpersonal relations with the patients, and others) and intrapersonal level (anxiety and depression symptoms, general mental health, prolonged grief disorder, and personal strategies to face a stressful situation). Perspectives of possible future studies and interventions on caregivers' burden will be finally discussed
Relationships between disability, quality of life and prevalence of nonmotor symptoms in Parkinson's disease
No full textPatients with Parkinson's disease suffer from a variety of motor and nonmotor symptoms (NMS), report reduced quality of life and increased disability. Aims of this study are to assess the impact of Parkinson's disease on disability and quality of life, to evaluate the relationships between them and NMS prevalence. In this cross-sectional study, adult patients were consecutively enrolled and administered the World Health Organization Disability Assessment Schedule (WHO-DAS II), the 36-Item Short-Form Health Survey (SF-36) and the Non Motor Symptoms Questionnaire (NMSQuest). One-sample t-test was used to compare WHO-DAS II and SF-36 scores with normative value. Pearson's correlation was performed between NMSQuest, WHO-DAS II and SF-36 summary scales. Independent-sample t-test was used to compare NMSQuest, WHO-DAS II and SF-36 scores in patients with Hoehn & Yahr stage <3 and ≥ 3. In total, 96 patients were enrolled. SF-36 and WHO-DAS II scores were significantly worse than the normative values. Correlation coefficients between NMSQuest, WHO-DAS II and SF-36's mental score were moderate, and were high between WHO-DAS II and and SF-36's physical score. Patients with Hoehn & Yahr stage ≥ 3 reported reduced quality of life, higher disability and more NMS. Parkinson's disease severity is strongly associated with reduced quality of life, increased disability and NMS prevalence. Disability and quality of life assessment tools measure psychosocial facets that are similar specifically with regard to physical health component of health-related quality of life, are sensitive enough to capture differences related to disease's progression and increased prevalence of NMS
Psychosocial difficulties in people with epilepsy: a systematic review of literature from 2005 until 2010
No full textThe aims of this paper are to identify factors that influence the psychosocial difficulties (PSDs) that persons with epilepsy experience in their everyday life, to describe their onset and the way they evolve over time, and to analyze the determinants of changes over time and other related variables. Electronic databases were searched for studies published in English between January 2005 and May 2010, and information from thirteen studies was extracted. The most frequent PSDs found in people with epilepsy were depressive symptoms, memory functions, quality of life, anxiety, stigma, locus of control, cognitive functions in general, and emotional functions in general. It can be stated that patients' life areas are affected by cognitive, emotional, and psychological problems. However, the majority of studies focus on isolated PSDs or on the effects of a specific determinant in the course of epilepsy, leaving some gaps that could encourage further research
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