Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context

Do Spanish informal caregivers come to the rescue of dependent people with formal care unmet needs?

This paper analyses the effect of unmet formal care needs on informal caregiving hours in Spain using the two wavesof the Informal Support Survey (1994, 2004). Testing for double sample selection from formal care receipt and theemergence of unmet needs provides evidence that the omission of either variable would causes underestimation of thenumber of informal caregiving hours. After controlling for these two factors the number of hours of care increaseswith both the degree of dependency and unmet needs. More importantly, in the presence of unmet needs, the numberof informal caregiving hours increases when some formal care is received. This result refutes the substitution modeland supports complementarity or task specificity between both types of care. For a given combination of formal careand unmet needs, informal caregiving hours increased between 1994 and 2004. Finally, in the model for 2004, theselection term associated with the unmet needs equation is larger than that of the formal care equation, suggestingthat using the number of formal care recipients as a quality indicator may be confounding, if we do not complete thisinformation with other quality indicators.

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Few studies have been found that to assess the factors that explain higher levels of familyburden in adults with intellectualdisability (ID) and intellectualdisability and mental disorders (ID-MD). The aims of this study were to assess familyburden in people with ID and ID-MD and to determine which sociodemographic, clinical and functionaldisabilityvariables account for familyburden. The sample is composed of pairs of 203 participants with disability and their caregivers, of which 33.5% are caregivers of people with ID and 66.5% of ID-MD. Assessments were performed using scales of clinical and functionaldisability as the following instruments: Weschler Adult Intelligence Scale-III (WAIS-III), Inventory for Client and Agency Planning (ICAP), Psychiatric Assessment Schedule for Adults with Development Disability (PAS-ADD checklist), Disability Assessment Schedule of the World Health Organization (WHO-DAS-II) and familyburden (Subjective and Objective FamilyBurden Inventory - SOFBI/ECFOS-II). People with ID-MD presented higher levels of functionaldisability than those with ID only. Higher levels of familyburden were related to higher functionaldisability in all the areas (p < 0.006-0.001), lower intelligence quotient (p < 0.001), diagnosis of ID-MD (p < 0.001) and presence of organic, affective, psychotic and behavioral disorders (p < 0.001). Stepwise multiple regression showed that behavioral problems, affective and psychotic disorder, disability in participation in society, disability in personal care and presence of ID-MD explained more than 61% of the variance in familyburden. An integrated approach using effective multidimensional interventions is essential for both people with ID and ID-MD and their caregivers in order to reduce familyburden.

Assessing positive mental health in people with chronic physical health problems: correlations with socio-demographic variables and physical health status

Background: A holistic perspective on health implies giving careful consideration to the relationship between physical and mental health. In this regard the present study sought to determine the level of Positive Mental Health (PMH) among people with chronic physical health problems, and to examine the relationship between the observed levels of PMH and both physical health status and socio-demographic variables. Methods: The study was based on the Multifactor Model of Positive Mental Health (Lluch, 1999), which comprises six factors: Personal Satisfaction (F1), Prosocial Attitude (F2), Self-control (F3), Autonomy (F4), Problem-solving and Self-actualization (F5), and Interpersonal Relationship Skills (F6). The sample comprised 259 adults with chronic physical health problems who were recruited through a primary care center in the province of Barcelona (Spain). Positive mental health was assessed by means of the Positive Mental Health Questionnaire (Lluch, 1999). Results: Levels of PMH differed, either on the global scale or on specific factors, in relation to the following variables: age: global PMH scores decreased with age (r=-0.129; p=0.038); b) gender: men scored higher on F1 (t=2.203; p=0.028) and F4 (t=3.182; p=0.002), while women scored higher on F2 (t -3.086; p=0.002) and F6 (t=-2.744; p=0.007); c) number of health conditions: the fewer the number of health problems the higher the PMH score on F5 (r=-0.146; p=0.019); d) daily medication: polymedication patients had lower PMH scores, both globally and on various factors; e) use of analgesics: occasional use of painkillers was associated with higher PMH scores on F1 (t=-2.811; p=0.006). There were no significant differences in global PMH scores according to the type of chronic health condition. The only significant difference in the analysis by factors was that patients with hypertension obtained lower PMH scores on the factor Autonomy (t=2.165; p=0.032). Conclusions: Most people with chronic physical health problems have medium or high levels of PMH. The variables that adversely affect PMH are old age, polypharmacy and frequent consumption of analgesics. The type of health problem does not influence the levels of PMH. Much more extensive studies with samples without chronic pathology are now required in order to be able to draw more robust conclusions.

¿Pueden contribuir los métodos visuales a avanzar hacia una investigación inclusiva? Un estudio sobre inclusión sociolaboral con personas con Trastorno Mental Grave (TMG) = Can visual methods help to go forward inclusive research? A study about social and labor inclusion with people with Severe Mental Illness (SMI)

En este artículo se pretende mostrar cómo la utilización de métodos visuales en la investigación contribuye a potenciar la participación activa de las personas con TMG. Se utiliza como ejemplo un estudio de caso de corte cualitativo que incorpora tres actividades de componente visual (el dibujo “el río de la vida”, las fotografías y el dibujo de proyección de futuro) para favorecer la reflexión narrada que, sobre sus experiencias y vivencias, desarrollan cinco personas con TMG. El uso de las fotografías y dibujos en este estudio permite afirmar que estas estrategias se han mostrado válidas para acceder, en la medida que los participantes han querido, a esferas de vida personales en trayectorias vitales determinadas por la enfermedad mental

Transición a la vida adulta de jóvenes con discapacidad intelectual. La opinión de los profesionales de servicios escolares y postescolares = Transition to adulthood of young people with intellectual disabilities. Views of professionals from school and postschool services

La transición a la edad adulta y vida activa es un proceso extremadamente complejo para los jóvenes con discapacidad. Para plantear propuestas de actuación que mejoren sus oportunidades de conseguir objetivos relacionados con la inclusión laboral y social en la vida adulta es imprescindible el diagnóstico en profundidad del contexto en que se construyen y desarrollan los procesos de transición. En este artículo se presenta un estudio en el que se ha aplicado el método Delphi con el propósito de obtener datos sobre la adecuación de los servicios o dispositivos que trabajan con jóvenes con discapacidad a lo largo de su proceso de transición a la edad adulta y vida activa, tanto en el escenario escolar como en el postescolar. Se han constituido dos paneles de expertos, uno con profesionales del ámbito educativo y otro con profesionales que trabajan en servicios postescolares. En ambos casos, los ejes temáticos son: visión del proceso de transición, aspectos curriculares y organizativos de los servicios, existencia de itinerarios de apoyo sistematizados, trabajo colaborativo entre profesionales, acciones de orientación con familias, adecuación de las alternativas postescolares, la formación de los profesionales, y coordinación de servicios. El análisis de los cuestionarios permite constatar las principales dificultades percibidas por los expertos en cada uno de los ámbitos y establece líneas básicas de actuación para mejorar los procesos de tránsito, entre las cuales destaca la necesidad de reforzar el papel de los equipos multiprofesionales en la articulación de redes de trabajo interprofesional

La inclusión laboral y social de los jóvenes con discapacidad intelectual : el papel de la escuela = Work and social inclusion of young people with intellectual disabilities : the role of the school

The transition to adult life from the standpoint of inclusion is a complex process, especially for young people with intellectual disabilities. This article analyzes the context of transition processes showing the main relationships and differences of the different scenarios where young people with disabilities develop personal pathways that lead to adulthood. Among these scenarios, the school -the period of compulsory secondary education- plays a key role. Therefore, a specific section is devoted to developing an approach to the role of the school in the construction of bridges that facilitate social and work inclusion. Finally, it presents some major challenges that need to be faced to improve the processes of transition from an inclusive perspective

Análisis de los apoyos que reciben los jóvenes con discapacidad intelectual en su transición a la vida adulta en España: una investigación a partir de experiencias de profesionales y personas con discapacidad = Analysis of support received by young people with intellectual disabilities in their transition to adulthood in Spain: an investigation based on the experiences of professionals and people with disabilities

The objective of this study is to gather information regarding the adaptation of the range of socio educational projects and services aimed at the transition to an adult life of young persons with intellectual disabilities in Spain. The research of the study has been done in three stages. During each stage, a specific tool has been used. One to one in-depth interviews have been undertaken with 45 professionals and 20 individuals with intellectual disabilities. The Delphi method has been applied to two panels consisting of 20 experts each. Firstly, results focus on the approach to different issues related to the devices. Secondly, the training opportunities that these individuals receive to ease the transition period is addressed. And finally, the study refers to the participation of the individuals themselves and their families in the process. The developed analysis allows us to propose strategies to improve the transition to adult life

Advancing towards inclusive social research: visual methods as opportunities for people with severe mental illness to participate in research

This article explores the possibilities offered by visual methods in the move towards inclusive research, reviewing some methodological implications of said research and reflecting on the potential of visual methods to meet these methodological requirements. A study into the impact of work on social inclusion and the social relationships of people suffering from severe mental illness (SMI) serves to illustrate the use of visual methods such as photo elicitation and graphic elicitation in the context of in-depth interviews with the aim of improving the aforementioned target group’s participation in research, participation understood as one of the basic elements of inclusive approaches. On the basis of this study, we reflect on the potential of visual methods to improve the inclusive approach to research and conclude that these methods are open and flexible in awarding participantsa voice, allowingpeople with SMI to express their needs, and therefore adding value to said approach

Design and implementation of a leisure program to improve function and wellbeing in people with depressive disorder

Depression is a major cause of disability and disease with significant costs to the health system and for the whole society. Regarding the treatment, in recent years has questioned the effectiveness of antidepressant drugs, with a recognition that although depressive disorders tend to improve with these treatments, residual symptoms seems to be still the norm, which is associated with the risk of new episodes or relapses, and faster its appearance. Otherwise many of the specialized clinical guidelines, propose a based on stepped-care model intervention, prioritizing less intrusive actions, including low-intensity psychosocial-interventions.

Human-Computer Interaction with older people through ethnographical lenses: everyday interactions with ICT

Report for the scientific sojourn carried out at the School of Computing of the University of Dundee, United Kingdom, from 2010 to 2012. This document is a scientific report of the work done, main results, publications and accomplishment of the objectives of the 2-year post-doctoral research project with reference number BP-A 00239. The project has addressed the topic of older people (60+) and Information and Communication Technologies (ICT), which is a topic of growing social and research interest, from a Human-Computer Interaction perspective. Over a 2-year period (June 2010-June 2012), we have conducted classical ethnography of ICT use in a computer clubhouse in Scotland, addressing interaction barriers and strategies, social sharing practices in Social Network Sites, and ICT learning, and carried out rapid ethnographical studies related to geo-enabled ICT and e-government services towards supporting independent living and active ageing. The main results have provided a much deeper understanding of (i) the everyday use of Computer-Mediated Communication tools, such as video-chats and blogs, and its evolution as older people’s experience with ICT increases over time, (ii) cross-cultural aspects of ICT use in the north and south of Europe, (iii) the relevance of cognition over vision in interacting with geographical information and a wide range of ICT tools, despite common stereotypes (e.g. make things bigger), (iv) the important relationship offline-online to provide older people with socially inclusive and meaningful eservices for independent living and active ageing, (v) how older people carry out social sharing practices in the popular YouTube, (vi) their user experiences and (vii) the challenges they face in ICT learning and the strategies they use to become successful ICT learners over time. The research conducted in this project has been published in 17 papers, 4 in journals – two of which in JCR, 5 in conferences, 4 in workshops and 4 in magazines. Other public output consists of 10 invited talks and seminars.

Classification models for neurocognitive impairment in HIV infection based on demographic and clinical variables

Objective: We used demographic and clinical data to design practical classification models for prediction of neurocognitive impairment (NCI) in people with HIV infection. Methods: The study population comprised 331 HIV-infected patients with available demographic, clinical, and neurocognitive data collected using a comprehensive battery of neuropsychological tests. Classification and regression trees (CART) were developed to btain detailed and reliable models to predict NCI. Following a practical clinical approach, NCI was considered the main variable for study outcomes, and analyses were performed separately in treatment-naïve and treatment-experienced patients. Results: The study sample comprised 52 treatment-naïve and 279 experienced patients. In the first group, the variables identified as better predictors of NCI were CD4 cell count and age (correct classification [CC]: 79.6%, 3 final nodes). In treatment-experienced patients, the variables most closely related to NCI were years of education, nadir CD4 cell count, central nervous system penetration-effectiveness score, age, employment status, and confounding comorbidities (CC: 82.1%, 7 final nodes). In patients with an undetectable viral load and no comorbidities, we obtained a fairly accurate model in which the main variables were nadir CD4 cell count, current CD4 cell count, time on current treatment, and past highest viral load (CC: 88%, 6 final nodes). Conclusion: Practical classification models to predict NCI in HIV infection can be obtained using demographic and clinical variables. An approach based on CART analyses may facilitate screening for HIV-associated neurocognitive disorders and complement clinical information about risk and protective factors for NCI in HIV-infected patients.

The experience of identity transformation process for people living with tetraplegia and paraplegia = El proceso de reconstrucción de la identidad de las personas afectadas de una paraplejia o tetraplejia

A spinal cord injury (SCI) is perceived as a source of biographical disruption, not only at a physical level but also in terms of people’s life stories, their motivation and their self-esteem. The aim of this study is to explore the factors that people with spinal cord injuries perceive as contributing to rebuilding their sense of self. Two focus groups were established from the SCIcommunity, one of which was made up of 14 people with paraplegia and the other of 9 people with tetraplegia. In addition, four individual interviews were conducted with the participants. The results of content analysis show that the two most prominent factors in the process of identity renegotiation are the partial transformation of the subject’s identity followed by a coming to terms with that new identity. To rebuild self-worth, the importance of finding a balance between change and continuity was identified. Renegotiation of identity after a spinal cord injury is a complex phenomenon that greatly influences the SCI individual’s quality of life perceptions. Reaching a balance between the changes experienced due to the injury and finding a sense of continuity can be either facilitated or obstructed by the economic, political, legal, architectural, and social context

Visual impairment and multimorbidity in a representative sample of the Spanish population

BACKGROUND: In the context of population aging, visual impairment has emerged as a growing concern in public health. However, there is a need for further research into the relationship between visual impairment and chronic medical conditions in the elderly. The aim of our study was to examine the relationship between visual impairment and three main types of co-morbidity: chronic physical conditions (both at an independent and additive level), mental health and cognitive functioning. METHODS: Data were collected from the COURAGE in Europe project, a cross-sectional study. A total of 4,583 participants from Spain were included. Diagnosis of chronic medical conditions included self-reported medical diagnosis and symptomatic algorithms. Depression and anxiety were assessed using CIDI algorithms. Visual assessment included objective distance/near visual acuity and subjective visual performance. Descriptive analyses included the whole sample (n = 4,583). Statistical analyses included participants aged over 50 years (n = 3,625; mean age = 66.45 years) since they have a significant prevalence of chronic conditions and visual impairment. Crude and adjusted binary logistic regressions were performed to identify independent associations between visual impairment and chronic medical conditions, physical multimorbidity and mental conditions. Covariates included age, gender, marital status, education level, employment status and urbanicity. RESULTS: The number of chronic physical conditions was found to be associated with poorer results in both distance and near visual acuity [OR 1.75 (CI 1.38-2.23); OR 1.69 (CI 1.27-2.24)]. At an independent level, arthritis, stroke and diabetes were associated with poorer distance visual acuity results after adjusting for covariates [OR 1.79 (CI 1.46-2.21); OR 1.59 (CI 1.05-2.42); OR 1.27 (1.01-1.60)]. Only stroke was associated with near visual impairment [OR 3.01 (CI 1.86-4.87)]. With regard to mental health, poor subjective visual acuity was associated with depression [OR 1.61 (CI 1.14-2.27); OR 1.48 (CI 1.03-2.13)]. Both objective and subjective poor distance and near visual acuity were associated with worse cognitive functioning. CONCLUSIONS: Arthritis, stroke and the co-occurrence of various chronic physical diseases are associated with higher prevalence of visual impairment. Visual impairment is associated with higher prevalence of depression and poorer cognitive function results. There is a need to implement patient-centered care involving special visual assessment in these cases.

Developing and evaluating a pictogram-based Instant Messaging service for individuals with cognitive disabilities

Information and communication technologies pose accessibility problems to people with disabilities because its design fails to take into account their communication and usability requirements. The impossibility to access the services provided by these technologies creates a situation of exclusion that reduces the self-suficiency of disabled individuals and causes social isolation, which in turn diminishes their overall quality of life. Considering the importance of these technologies and services in our society, we have developed a pictogram-based Instant Messaging service for individuals with cognitive disabilities who have reading and writing problems. Along the paper we introduce and discuss the User Centred Design methodology that we have used to develop and evaluate the pictogram-based Instant Messaging service and client with individuals with cognitive disabilities taking into account their communication and usability requirements. From the results obtained in the evaluation process we can state that individuals with cognitive disabilities have been able to use the pictogram-based Instant Messaging service and client to communicate with their relatives and acquaintances, thus serving as a tool to help reducing their social and digital exclusion situation.