L'impacte dels serveis i la relació professional en la qualitat de vida de les famílies amb fills amb discapacitat intel·lectual

En les últimes dècades, la qualitat de vida familiar (d'ara endavant QdVF) ha emergit com un constructe decisiu tant per millorar les condicions de vida de les famílies de persones amb discapacitat com per valorar els resultats dels serveis i suports que aquestes reben. La finalitat d'aquesta recerca ha estat, d'una banda, conèixer en quina mesura els suports que ofereixen els serveis d'atenció precoç - i altres serveis- s'adeqüen a les necessitats dels infants amb trastorns en el desenvolupament i de les seves famílies i, en conseqüència, tenen un impacte positiu en la QdVF; i de l'altra, explorar si la col•laboració entre les famílies i els professionals esdevé un factor fonamental que intervé en la percepció de la QdVF. Per poder respondre aquestes qüestions prèviament hem hagut d'adaptar i validar al context català els instruments Service Inventory (Beach Center, 2003), Beach Center Family-Professional Partnership (Summers el al., 2005) i Beach Center FQOI. (Hoffman et al., 2006) i crear uns indicadors complementaris per millorar la informació derivada d'aquestes escales. La investigació s'ha dut a terme amb la col•laboració de 202 famílies d'infants amb trastorns en el desenvolupament de 0 a 6 anys que assisteixen a 13 centres de desenvolupament infantil i atenció precoç. Metodològicament, la investigació és de naturalesa descriptiva i explicativa/estructural. Per conèixer la influència que l'adequació dels suports i la col•laboració famílies -professionals exerceixen en la QdVF hem fet ús del Model d' Equacions Estructurals. Els resultats obtinguts en la recerca posen de manifest, en primer lloc, que els tres instruments adaptats s'adeqüen amb èxit a la població catalana i que els índexs dissenyats han resultat ser una molt bona solució per facilitar l'avaluació i la interpretació dels constructes que les escales anteriors pretenen mesurar. En segon 1loc, que la percepció de les famílies és que els serveis no acaben de donar una resposta com pleta a les necessitats particulars dels seus fills i del conjunt de la família. En tercer lloc, que la col•laboració que mantenen amb els professionals és relativament bona i que estan raonablement satisfetes amb la seva QdVF. Finalment, que l' adequació dels suports ha resultat ser un bon predictor de la QdVF i que la col•laboració es revela un dels factors clau que fa de mitjancer d'aquest efecte. En síntesi, assolir els objectius que ens hem proposat ha de permetre que els professionals dels serveis i les institucions públiques es trobin en condicions més favorables per dissenyar propostes de millora pels serveis d'atenció precoç, amb la finalitat que la qualitat de vida d'aquestes famílies i el progrés dels infants amb discapacitat que viuen a Catalunya es vegi progressivament potenciada i incrementada.En las últimas décadas, la calidad de vida familiar (en adelante CdVF) ha emergido como un constructo decisivo tanto para mejorar las condiciones de vida de las familias de personas con discapacidad como para valorar los resultados de los servicios y apoyos que estas reciben. La finalidad de esta investigación ha sido, por una parte, conocer en qué medida los apoyos que proporcionan los servicios de atención temprana - y otros servicios- se adecúan a las necesidades de los niños con trastornos en el desarrollo y a las de sus familias y, en consecuencia, tienen un impacto positivo en la CdVP; por otra, explorar si la colaboración entre las familias y los profesionales aparece como un factor fundamental que interviene en la percepción de la CdVF. Con el fin de responder estas cuestiones previamente nos hemos visto con la necesidad de adaptar y validar al contexto catalán los instrumentos Service Inventory (Beach Center, 2003), Beach Center Family-Profesi onal Partnership (Summers et al., 2005) y Beach Center FQOL (Hoffman el al., 2006) y crear unos índices complementarios para mejorar la información derivada de estas escalas. La investigación se ha llevado a cabo con la colaboración de 202 familias de niños con trastornos en el desarrollo de 0 a 6 años que asisten a 13 centros de atención temprana. Metodológicamente, la investigación es de naturaleza descriptiva y explicativa/estructural. Para conocer la influencia que la adecuación de los apoyo s y la colaboración familias-profesionales ejercen en la CdVF nos hemos basado en la técnica de análisis de datos del Modelo de Ecuaciones Estructurales. Los resultados obtenidos ponen de manifiesto, en primer lugar, que los tres instrumentos adaptados se ajustan a la población catalana y que los índices diseñados han resultado ser una muy buena solución por facilitar la evaluación y la interpretación de los constructos que las escalas anteriormente citadas pretenden medir. En segundo lugar, que la percepción de las familias es que los servicios no acaban de dar una respuesta completa a las necesidades particulares de sus hijos y del conjunto de la familia. En tercer lugar, que la colaboración que las familias mantienen con los profesionales es relativamente buena y que están razonablemente satisfechas con su CdVF. Finalmente, que la adecuación de los apoyos resulta ser un predictor de la CdVF y que la colaboración es uno de los factores esenciales que media este efecto. En síntesis, dar respuesta a los objetivos propuestos debería permitir que los profesionales de los servicios y las administraciones estén en condiciones más favorables para diseñar propuestas de mejora para los servicios de atención temprana, con el fin de que la calidad de vida de estas familias y el progreso de los niños con discapacidad que viven en Catalunya se vea progresivamente potenciados e incrementados.In recent decades, the Family Quality of Life (FQOL) has emerged as a decisive construct, both to improve the condition of lire of the families of persons with disabilities and to assess the results of services and supports that they receive. The aim of this research is twofold: to identify to what extent early childhood intervention center supports - and those of other services - meet the needs of children with intellectual and developmental disabilities and their families and, as a result, have a positive impact on the FQOL; and to explore whether the partnership between families and professionals has become a fundamental mediator factor of the perception of FQOL. In order to answer these questions we had to adapt and validate the instruments Service Inventory (Beach Center, 2003), Beach Center Family-Professional Partnership (Summers et al., 2005) and Beach FQOL (Hoffman et al., 2006) to the Catalan context, and we had to create complementary indexes to improve upon the information stemming from these scales. This study was conducted in collaboration with 202 families with children with intellectual disabilities ranging in age from 0 to 6 years, who attended 13 early childhood intervention centers. Methodologically, this study is descriptive and explanatory/structural; we used the Structural Equation Models to identify the influence that the adequacy of supports and the partnerships exert on the FQOL. The results obtained from the research show that, firstly, the three adapted instruments were successfully used with the Catalan population, and that the designed indexes turned out to be a good solution for evaluating and interpretating the constructs that the previous scales tried to measure, Secondly, the families' perception is that the centers do not provide a complete answer to the specific needs of their children nor of the family as a whole. Thirdly, the partnerships held with professionals arerather good, and the families are reasonably satisfied with their FQOL. Finally, the supports’ adaptation turned out to be a good predictor of the FQOL and that these partnerships have become one of the key factors that mediate on this effect. In brief, achieving the set goals that we have set forth must allow service professionals and public bodies to be in a more favourable positions lo design policies to improve early childhood intervention centers, to the end that the quality of life of these families and the progress of children with disabilities living in Catalonia will be progressively strengthened and increased

State of the art of family quality of life in early care and disability: A systematic review

Abstract: Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on ?family quality of life? or ?quality of family life? in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0?6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted

Proposal of indexes to evaluate Family Quality of Life, Partnership, and Family Support Needs

In recent years, research on the families of persons with Intellectual Disability (ID) has focused on the factors that contribute to the improvement of their Family Quality of Life (FQoL), such as the support they get and their partnership with professionals. However, due to the complexity of the variables related to FQoL and support needs and adequacy, measuring these constructs is difficult and multidimensional. To do this, the aim of this study is to generate new indexes through a series of instruments and assess their feasibility to improve the evaluation process and not reduce the situation to single measurements. We applied 3 instruments adapted to the Spanish population - Service Inventory, Beach Center Family-Professional Partnership Scale, and Beach Center FQOL - to a sample of 202 families of children with ID and we studied the indexes. The results show that the new indexes were designed to make FQoL measurements more easily manageable and interpretable. In fact, we found a statistical significant correlation between partial indexes (p < .001) in relation to the total score and very high sensibility of the indexes in relation to the degree of disability (p < .001). They also facilitate conducting complex analyses without having to discard any relevant measurement dimension

The Spanish family quality of life scales under and over 18 years old: Psychometric properties and families’ perceptions

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E &lt; 18 and the CdVF-E &gt;18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER &lt; 18 and the CdVF-ER &gt; 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services.This research was funded by Plena Inclusión (Confederación Española de Organizaciones en favor de las Personas con Discapacidad Intelectual). And the APC was funded by School of Psychology, Education and Sport Sciences Blanquerna, Ramon Llull Universit

Competencia y confianza profesional en atención temprana en el uso de prácticas recomendadas y su relación con la involucración parental

Parent involvement in early childhood intervention (ECI) is considered an important component of recommended ECI practices. However, how parents are involved in their child’s early intervention differs considerably between ECI practitioners. Current research indicates that practitioners’ competence and confidence appraisals influence the use of ECI practices. The purposes of this study were to (1) adapt and validate the Early Childhood Intervention Practitioner Competence and Confidence Scale for use in Spain, (2) examine the psychometric properties of the scale, (3) compare practitioners’ beliefs about their competence and confidence in using recommended ECI practices, and (4) evaluate the relationship between belief appraisals and practitioners’ judgmentsof parent involvement in ECI. The sample included 130 Spanish ECI practitioners. The results indicated that the scale is a valid and reliable instrument for measuring practitioners’ competence and confidence in using six ECI recommended practices in Spain. Practitioners’ appraisals of competence and confidence, however, differed across the recommended practices. Significant positive correlations were found between the practitioners’ appraisals of competence and confidence and their judgments of parent in-volvement. These results show that a strong sense of competence and confidence in using different kinds of ECI-recommended practices is related to increased parent involvement in active child participation in learning and development in everyday activities.Research and practical implications are discussed.La involucración parental es un componente importante de las prácticas recomendadas en atención temprana (AT). Sin embargo, la forma en que los padres son involucrados en la intervención temprana de sus hijos difiere considerablemente entre los profesionales. En este sentido, la investigación actual muestra que el juicio de los profesionales en relación a su competencia y confianza influye el uso de prácticas de AT. Los objetivos de este estudio fueron (1) adaptar y validar la Early Childhood Intervention Practitioner Competence and Confidence Scale para su uso en España, (2) examinar las propiedades psicométricas de esta escala, (3) comparar las creencias de los profesionales en relación a su competencia y confianza en el uso de prácticas recomendadas, y (4) analizar la relación entre estas creencias y el juicio de los profesionales sobre la involucración parental en AT. A este fin, se contó con una muestra española de 130 profesionales de AT. Los resultados indicaron que la escala es un instrumento válido y fiable para medir la competencia y confianza profesional en el uso de seis prácticas recomendadas de AT en el contexto español. El juicio de los profesionales respecto a su competencia y confianza difirió entre las diversas prácticas recomendadas. Se encontraron correlaciones positivas y significativas entre las valoraciones de competencia y confianza de los profesionales y sus juicios sobre la involucración parental. Estos resultados muestran que una elevada competencia y confianza en el uso de diferentes tipos de prácticas recomendadas en AT está relacionada con una mayor involucración parental en la participación activa del niño en su aprendizaje y desarrollo en actividades cotidianas. Se discuten las implicaciones prácticas y de investigación

Incidència del desenvolupament científic europeu a les ciències de la salut en els Països Catalans en el segle XVIII: aportacions de la farmacopea londinensis

Són nombrosos els estudis que fan paleses les interrelacions entre els homes de ciència catalans i els desenvolupaments científics europeus, moguts pel seu interès i preocupació per les seves professions (1) com va descriure per exemple la Dr. A. M. Carmona en el seu discurs d'ingrés a la Reial Acadèmia de Farmàcia de Barcelona com a acadèmic electe. L'objecte de la comunicació d'avui és donar a conèixer la primera edició traduïda de la Farmacopea de Londres (1797), fent especial esmena dels comentaris i anotacions aclaratòries que el Dr. Casimiro Ortega, traductor de l'obra, va fer referent als Paisos Catalans i als seus científics. La qual cosa, demostra un cop més la qualitat i alt nivell científic assolit pels catalans d'aquella època

NGC1277: a massive compact relic galaxy in the nearby Universe

As early as 10 Gyr ago, galaxies with more than 10^11 Msun in stars already existed. While most of these massive galaxies must have subsequently transformed through on-going star formation and mergers with other galaxies, a small fraction (<0.1%) may have survived untouched till today. Searches for such relic galaxies, useful windows to explore the early Universe, have been inconclusive to date: galaxies with masses and sizes like those observed at high redshift (M*>10^11 Msun; Re<1.5 kpc) have been found in the local Universe, but their stars are far too young for the galaxy to be a relic galaxy. This paper explores the first case of a nearby galaxy, NGC1277 (in the Perseus cluster at a distance of 73 Mpc), which fulfills all the criteria to be considered a relic galaxy. Using deep optical spectroscopy, we derive the star formation history along the structure of the galaxy: the stellar populations are uniformly old (>10 Gyr) with no evidence for more recent star formation episodes. The metallicity of their stars is super-solar ([Fe/H]=0.20+-0.04) and alpha enriched ([alpha/Fe]=0.4+-0.1). This suggests a very short formation time scale for the bulk of stars of this galaxy. This object also rotates very fast (Vrot~300 km/s) and has a large velocity dispersion (sigma>300 km/s). NGC1277 will allow future explorations in full detail of properties such as the structure, internal dynamics, metallicity, dust content and initial mass function at around 10-12 Gyr back in time when the first massive galaxies were built.Comment: 4 figures; Accepted for publication at ApJ Letter

Analysis of porcine MUC4 gene as a candidate gene for prolificacy QTL on SSC13 in an Iberian × Meishan F2 population

Background: Reproductive traits, such as prolificacy, are of great interest to the pig industry. Better understanding of their genetic architecture should help to increase the efficiency of pig productivity through the implementation of marker assisted selection (MAS) programmes. Results: The Mucin 4 (MUC4) gene has been evaluated as a candidate gene for a prolificacy QTL described in an Iberian × Meishan (Ib × Me) F2 intercross. For association analyses, two previously described SNPs (DQ124298:g.243A>G and DQ124298:g.344A>G) were genotyped in 347 pigs from the Ib × Me population. QTL for the number of piglets born alive (NBA) and for the total number of piglets born (TNB) were confirmed on SSC13 at positions 44 cM and 51 cM, respectively. The MUC4 gene was successfully located within the confidence intervals of both QTL. Only DQ124298:g.344A>G MUC4 polymorphism was significantly associated with both NBA and TNB (P-value < 0.05) with favourable effects coming from the Meishan origin. MUC4 expression level was determined in F2 sows displaying extreme phenotypes for the number of embryos (NE) at 30-32 days of gestation. Differences in the uterine expression of MUC4 were found between high (NE ≥ 13) and low (NE ≤ 11) prolificacy sows. Overall, MUC4 expression in high prolificacy sows was almost two-fold increased compared with low prolificacy sows. Conclusions: Our data suggest that MUC4 could play an important role in the establishment of an optimal uterine environment that would increase embryonic survival during pig gestation