Els processos d'acomodació en les rutines diàries de les famílies amb un fill amb problemes en el desenvolupament

La present tesi se centra en l'estudi dels processos d'acomodació de les famílies davant les necessitats de criança que presenten els seu fills entre 3 i 5 anys amb problemes en el desenvolupament a l'hora de crear i mantenir unes rutines diàries familiars que siguin significatives pels seus membres. Els motius que ens porten a plantejar-nos aquesta tesi els podem resumir en dos. En primer lloc, esperem contribuir modestament des de la nostra realitat al cos de coneixement científic sobre com les famílies s'adapten a les noves necessitats del seu fill amb DID. En segon lloc, considerem que aquest coneixement pot tenir implicacions per a la pràctica professional a dos nivells. A un nivell més general, permetrà dissenyar programes i ajuts per a les famílies que tenen un infant amb discapacitat i, a un nivell més concret, aportarà als professionals reflexions i eines que els permetin apropar-se a la vida diària de les famílies i, en conseqüència, elaborar programes d'intervenció adients a la situació de cada família i coherents amb les seves necessitats reals. El treball s'organitza en tres grans parts. En la primera part es plantegem els elements teòrics que sustenten la recerca. Aquesta part persegueix un doble objectiu: d'una banda, justificar la importància de centrar-nos en el procés d'adaptació de les famílies a la discapacitat del fill a partir de la construcció i el manteniment de les rutines diàries i, de l'altra, desgranar aquells conceptes claus de la vida de les famílies que ens permeten conèixer i comprendre com s'adapten a les noves necessitats.La segona part se centra en el treball de camp realitzat, en l'estudi i en la discussió dels resultats obtinguts. Consta de tres capítols. En el primer es presenta l'estudi que consisteix en la identificació i comprensió dels processos d'acomodació que duen a terme 18 famílies catalanes amb un fill amb problemes en el desenvolupament per tal de crear i mantenir unes rutines diàries que siguin sostenibles amb el seu nínxol ecocultural. Per realitzar-lo hem optat per l'estudi de casos múltiples com a mètode.La tercera i última part de la tesi es dedica a les conclusions que, segons la nostra opinió, es desprenen del treball de camp realitzat en relació al marc teòric presentat. Aquest últim punt es completa amb la presentació d'algunes de les limitacions de l'estudi realitzat i la descripció de noves propostes de recerca.La presente tesis se centra en el estudio de los procesos de acomodación que llevan a cabo las familias debido a las necesidades de crianza y educación que presentan sus hijos de entre 3 y 5 años con problemas en el desarrollo a la hora de crear y mantener unas rutinas diarias que sean significativas para sus miembros. Los motivos que nos han llevado a plantear esta tesis se puede resumir en dos. En primer lugar, esperemos contribuir modestamente y desde nuestra realidad al cuerpo científico sobre como las familias se adaptan a las nuevas necesidades de su hijo con problemas en el desarrollo. En segundo lugar, consideramos que este conocimiento puede tener implicaciones para la práctica profesional a dos niveles. A un nivel más general, permitirá diseñar programas y ayudas para las familias con hijos con discapacidad, y a un nivel más concreto, aportará a los profesionales reflexiones y herramientas que les permitan acercarse a la vida diaria de las familias y, en consecuencia, elaborar programas de intervención más adecuados a la situación de cada familia y coherentes con sus necesidades reales. El trabajo se organiza en tres partes. En la primera parte se plantean los elementos teóricos que sustentan el estudio. Esta parte persigue un doble objetivo: por una parte, justificar la importancia de centrarnos en el proceso de adaptación de las familia a la discapacidad de su hijo a partir de la construcción y el mantenimiento de unas rutinas diarias familiares y, por la otra, describir los conceptos claves de la vida de las familias que nos permiten conocer y comprender como se adaptan a las nuevas necesidades. La segunda parte se centra en el trabajo de campo realizado, en los resultados, y en la discusión de estos resultados. Consta de tres capítulos. En el primero es presenta el estudio que consiste en la identificación y la comprensión de los procesos de acomodación que llevan a cabo 18 familias catalanas con un hijo con problemas en el desarrollo con la finalidad de crear y mantener unas rutinas familiares que sean sostenibles con su entorno ecocultural. Para realizarlo hemos optado por el estudio de casos múltiple como método. La tercera y última parte de la tesis se dedica a las conclusiones que, según nuestra opinión, se derivan del trabajo de campo realizado en relación con el marco teórico presentado. Este último punto se completa con la presentación de algunas de las limitaciones del estudio realizado y la descripción de nuevas propuestas de investigación.The thesis focuses on the study of the accommodation processes that are doing the families who have a child with disabilities due to their educational and care needs in order to create and sustain significant dairy routines. There are two reasons that move us to realize this study. First, we hope to contribute modestly from our reality to the scientific knowledge about family adaptation. Second, we considerer that this knowledge could have practical implication at two levels. From a general level, it allows to design programs and to support the families with a child with developmental disabilities. From a concrete level, it provides reflexions and tools that permit to meet the daily family life and, in consequences, to elaborate interventional programs/working proposal more realistic and coherent with their real needs. The present document is organized in three parts. In the first part we expose theoretical framework aspects that sustain the study. The objective is double. First, justify the importance of focus on the sustainability of the family daily routines in order to study the family adaptation. Second, describe the key concepts of the family life that let us know and understand how they adapt to the new needs. The second part is focused on the field work, results and the discussions of that. It's composing of three chapters. The study consist on the identification and the understanding of the accommodations processes that are doing 18 families with a child with developmental problems in order to create a sustainability family daily routines. We have adopted the "multiples cases study" as a method. The last part presents the conclusions of the study according to the theoretical framework. Furthermore, we present the limits of the present study and we suggest and describe some new further researches

Necesidades de apoyo de las familias de personas con discapacidad intelectual de Catalunya

A partir de los modelos teóricos de calidad de vida familiar, en el presente estudio se han explorado las necesidades y propuestas de mejora que manifiestan tener las familias con un familiar con discapacidad intelectual de Cataluña, con objeto de poder tomar, posteriormente, las decisiones oportunas en cuanto a la provisión de apoyos. Un total de 46 personas (32 familiares de personas con discapacidad intelectual y 14 personas con discapacidad intelectual) han participado en este estudio mediante grupos de discusión y entrevistas individuales. El análisis de los datos se ha llevado a cabo a partir de la técnica de análisis del contenido. Las necesidades y propuestas de mejora se presentan agrupadas según 13 dimensiones de calidad de vida familiar. A pesar del innegable progreso en las últimas décadas en Cataluña,se cree que los servicios existentes no acaban de dar una respuesta adecuada a determinadas necesidades de las familias. A partir de dichas necesidades, se formulan propuestas de mejora con el fin de promover la calidad de vida de lasfamilias y de las personas con DI

Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención

The aim of this paper is to present cDVF-E scales for families with children of 0-18 years, on one hand, and over 18 years, on the other, that researchers from five spanish universities have recently validated and standardized to the spanish population. To this end, first, the importance of the construct of quality of family life and its implications for research and practice should be emphasized. Afterwards, we introduce the first international initiatives measuring the quality of family life developed in the first decade of this century. Then the features, dimensions and psychometric properties of the scales are synthetically presented. Finally, the authors encourage practitioners and organizations to use these tools in the context of family-centered model and provides, as a conclusions, some consideration

Spanish Family Quality of Life Scales: Under and over 18 year old

Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans. Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales. Results Both FQoL scales were consistent and have valid psychometric characteristics. Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families'lives

Impact of Supports and Partnership on Family Quality of Life

Background: In recent decades, Family Quality of Life (FQOL) has emerged as a decisive construct, both to improve the living conditions of the families of people with disabilities and to assess the results on the services and supports that they receive. The aim of this research is to determine the perception of the families regarding their support needs, the quality of their partnerships with professionals, and their FQOL and then identify to what extent the supports of early childhood intervention centers have a positive impact on the families' FQOL while exploring whether the family-professional partnership has become a fundamental intervening factor of FQOL. Method: The participants were 202 families with children aged 0-6 with intellectual and developmental disabilities. We used the structural equation model to analyze the influence that the adequacy of the supports and the partnerships exerted on FQOL. Results: The results indicate that the families have language and speech support needs for their children and information needs for themselves, and that they are mostly satisfied with their partnerships with the professionals and their FQOL. Our results also indicate that their degree of satisfaction with the support was a good predictor of FQOL and their ratings of partnership quality was a key factor interceding on this effect. Conclusions: This study provides professionals and public institutions with guidance when designing plans to improve early childhood intervention centers so the quality of life of these families and the progress of children with disabilities living in Spain become progressively stronger

The transition process from center-based programmes to family-centered practices in Spain: a multiple case study

One of the most important challenges that early intervention (EI) has faced in recent years is the transition process from child-based practices to familycentered programmes. This study's main objectives were: (a) To understand the changes identified by the staff in their professional knowledge and practices with families during the transition from a center-based programmes to family-centered practices; (b) To explore the parents' satisfaction with the family-centered practices; (c) To know how professionals perceive the transition from center-based to familycentered practices in EI. Participants were 11 families of children with intellectual disability and 11 professionals from six early intervention centres in Spain. Results showed that professionals valued familycentered services because it allowed them to gather relevant information about the families' strengths and resources. Families perceived their participation as a real empowerment for all family members and positive for their children. Implications for professional practice in EI are discussed

Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención

The aim of this paper is to present cDVF-E scales for families with children of 0-18 years, on one hand, and over 18 years, on the other, that researchers from five spanish universities have recently validated and standardized to the spanish population. To this end, first, the importance of the construct of quality of family life and its implications for research and practice should be emphasized. Afterwards, we introduce the first international initiatives measuring the quality of family life developed in the first decade of this century. Then the features, dimensions and psychometric properties of the scales are synthetically presented. Finally, the authors encourage practitioners and organizations to use these tools in the context of family-centered model and provides, as a conclusions, some consideration

L'Escala d'Intensitat de Suports (EIS): un instrument per promoure el benestar de les persones arnb discapacitat intel·lectual

L'Escala d'irtensitat de Suports (EIS) és un instrument que té per finalitat avaluar les necessitats de suport, determinar-ne intensitat, supervisar-ne el progrés i avaluar els de les persores amb discapacitat intelectual. Aquesta escala intenta donar resposta als problemes de definció i mesura deis suports que deriven de 'La definició de 1992". L'objectiu de l'article és fer una presentació i descripció l'EIS, les seves característiques principals i la proposta d'adaptació i validació a la població catalana amb discapacitat intel·lectual. En els comentaris finals, es valora positivament el fet de disposar en català d'instrumen d'aquestes característiques, tant per a les mateixes persones arnb discapacitat com per als serveis i institucions dedicats a la seva atenció i, en definitiva, per a la millora de la qualitat de vid

Spanish Family Quality of Life Scales: Under and over 18 year old

Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans. Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales. Results Both FQoL scales were consistent and have valid psychometric characteristics. Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families'lives

Spanish Family Quality of Life Scales: Under and over 18 year old

Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans. Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales. Results Both FQoL scales were consistent and have valid psychometric characteristics. Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families'lives