Space-temporal analysis of the Specialized Services of the Health Care Network for Persons with Disabilities in Brazil.

Considering the institution of the Care Network for People with Disabilities (RCPD) in Brazil, this study analyzed the spatial distribution and the temporal trend of implementing specialized services that received financial support in the first eight years of this policy. We realized an ecological study based on the National Register of Health Facilities data from April/2012 to March/2020. A joinpoint regression was used for temporal trend analysis, and thematic maps were produced for spatial analysis of rehabilitation modalities and types of services. The most available services were physical and intellectual rehabilitation. The Southeast and Northeast regions had a higher concentration of specialized services. Despite the lower number of services, there was an average annual growth between 9.6% and 41.3%. This finding indicates an increase in specialized services for people with disabilities in the period analyzed, but care gaps are still being verified in the macro-regions of Brazil.

Os grupos condutores na governança e implementação da Rede de Cuidados à Pessoa com Deficiência no SUS / The conducting groups in the governance and implementation of the Care Network for People with Disabilities in the SUS

Resumo A Rede de Cuidados à Pessoa com Deficiência estabeleceu a criação de Grupos Condutores Estaduais visando implementar Diretrizes Clínicas e Protocolos e acompanhar as ações desta Rede. O objetivo deste trabalho foi investigar o papel dos grupos condutores na governança e implementação da referida Rede, analisando sua constituição e ações realizadas. Realizou-se pesquisa descritiva, com abordagem qualitativa, multicêntrica, avaliando a fase de implementação da política, realizada nas cinco regiões do país; analisaram-se documentos publicados entre abril/2012 a dezembro/2018, relacionados aos grupos condutores em oito estados. Emergiram duas categorias como resultado da análise de conteúdo: instituição e composição dos grupos condutores e ações realizadas pelos grupos. Identificou-se a instituição de grupo condutor específico para a Rede em seis estados, e em dois estados a condução realiza-se pelos Grupos Estaduais das Redes de Atenção à Saúde. Observou-se heterogeneidade na composição dos grupos e na realização das atribuições previstas, refletindo indefinições da portaria e desafios de cada estado para a regionalização, participação social, planejamento, acompanhamento e monitoramento da rede. Entretanto, destacou-se o protagonismo destes Grupos enquanto espaço de governança gerencial. Salienta-se a necessidade da continuidade de investimentos financeiros, políticos e de gestão para garantir resolutividade, governança e gestão democrática da Rede.

Abstract The Care Network for People with Disabilities established the creation of State Conducting Groups to implement Clinical Guidelines and Protocols and monitor the actions of this Network. This work aimed to investigate the role of conducting groups in the governance and implementation of the referred Network, analyzing its constitution and actions taken. Descriptive research was carried out, with a qualitative, multicentric approach, evaluating the implementation phase of the policy, carried out in the five regions of the country; documents published between April/2012 and December/2018 were analyzed, related to conducting groups in eight states. Two categories emerged as a result of the content analysis: institution and composition of the driving groups and actions carried out by the groups. The institution of a specific conduction group for the Network was identified in six states, and in two states the conduction is carried out by the State Groups of the Health Care Networks. Heterogeneity was observed in the composition of the groups and in the accomplishment of the foreseen attributions, reflecting the lack of definitions of the ordinance and challenges of each state for regionalization, social participation, planning, follow-up and monitoring of the network. However, the protagonism of these Groups was highlighted as a space for managerial governance. The need for continuity of financial, political and management investments is highlighted to guarantee resolution, governance and democratic management of the Network.

The impact of Dependency Act benefits on employment / La creación de empleo derivada de las prestaciones de la Ley de Dependencia

Objective: To assess the amount of employment generated from the effective development of the Dependency Act in 2012, by evaluating the number of jobs depending on whether in-kind services or cash benefits were applied. Methods: The level and total costs of dependency were obtained by using the Survey on Disability, Personal Autonomy and Dependency Situations of 2008. The consumption of dependent households was collected from the Household Budget Survey of 2012 carried out by the Spanish Statistics Institute. The impact on employment was estimated using an extended Input-Output model based on Symmetric Input-Output Tables and labour data from the Spanish National Accounts Base. Results: The total estimated costs of dependency in 2012 were 4,545 million Euros for in-kind services and 2,662 for cash benefits. One hundred and ninety-five thousand, six hundred and sixty-eight jobs were generated in 2012 from dependency costs, and132,997 were linked to in-kind services and 62,671 to cash benefits. Every million Euros allocated for dependency by the Government returned 53.33 jobs linked to in-kind services and 46.21 to cash benefits. Furthermore, 341,505 jobs would have been created if dependency benefits had been exclusively offered via in-kind services. Conclusions: Dependency benefits were equally distributed between in-kind services and cash benefits in 2012. Given that two out of three job positions generated from dependency benefits are linked to in-kind services, while the remaining third is generated by cash benefits, we conclude that around 146 thousand more jobs would have been generated if benefits had been offered as in-kind services instead of overusing cash benefits

Objetivo: Estimar la creación de empleo generada por la implantación de la Ley de Dependencia en 2012, evaluando el número de puestos de trabajo vinculados a servicios y a prestaciones económicas. Métodos: Los grados y los costes totales de la dependencia se han obtenido de la Encuesta sobre Discapacidades, Autonomía Personal y Situaciones de Dependencia de 2008. El consumo de los hogares dependientes proviene de la Encuesta de Presupuestos Familiares realizada por el Instituto Nacional de Estadística en 2012. La creación de empleo se ha estimado con un modelo ampliado input-output basado en las tablas simétricas input-output y en datos de empleo de la Contabilidad Nacional de España. Resultados: Los costes totales de dependencia estimados en 2012 fueron de 4545 millones de euros en servicios y 2662 millones de euros en prestaciones económicas. Se generaron 195.668 empleos vinculados a prestaciones de dependencia en 2012, 132.997 asociados a servicios y 62.671 a prestaciones económicas. Cada millón de euros asignados a prestaciones de dependencia por la Administración generó 53,33 empleos vinculados a servicios y 46,21 a prestaciones económicas. Además, se habrían creado 341.505 empleos si las prestaciones de dependencia hubieran sido asignadas únicamente como servicios. Conclusiones: Los costes de dependencia se distribuyeron por igual entre servicios y prestaciones económicas en 2012. Dado que dos de cada tres empleos generados por las prestaciones de dependencia están vinculados a servicios, mientras que el tercio restante a prestaciones económicas, se habrían generado 146.000 empleos más si todas las prestaciones hubieran sido asignadas como servicios en lugar de la masiva utilización de prestaciones económicas

Implementation of Health Links coordinated care plans for adults with intellectual and developmental disabilities: Cross-sectoral pilot program.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD) are a complex population that could benefit from improved care coordination across health and social sectors, as they experience poorer health and have higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions. OBJECTIVE OF PROGRAM: To pilot a novel, enhanced model of care coordination for complex patients with IDD. PROGRAM DESCRIPTION: Health Links is a provincial care-coordination program for patients with complex health care needs. This pilot program adapted Health Links to include a guide and training specific to adults with IDD to ensure that these patients' needs were met and high-quality, efficient care was provided. CONCLUSION: A tailored care-coordination approach for adults with IDD was able to identify complex patients in need and successfully bridge cross-sectoral care.

Atender las necesidades sociosanitarias de las personas con capacidades diferentes / Adressing social-health needs of people with different abilities

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Leaving No One Behind: Strengthening Access to Eye Health Programs for People With Disabilities in 6 Low- and Middle-Income Countries.

PURPOSE: To assess the impact of inclusive eye health programs for people with disabilities. DESIGN: A synthesis evaluation study. METHODS: A cross-disciplinary team of ophthalmologists, evaluation, and disability-inclusive development advisors purposively selected evaluation reports of CBM-supported inclusive eye health programs in low- and middle-income countries. Employing a change-promoting paradigm, salient achievements and challenges were narratively analyzed and recommendations suggested based on a previously developed framework for strengthening disability inclusion in eye health programs. RESULTS: Evaluations from 10 programs implemented in 6 countries (Cambodia, Egypt, Ethiopia, Indonesia, Pakistan, Vietnam) from 2011 to 2016 were identified. Training of medical staff and government officials resulted in increased awareness about disability rights and improved physical accessibility of eye health facilities. Relevant information about inclusion in eye health was incorporated in national eye health training curricula in some countries. Information, education, and communication material about eye health neglected patients with hearing and learning impairments. An overly narrow focus on disability inclusion confounded intersectoral barriers to eye health services. Collaboration of eye health staff with disability peoples organizations improved significantly but evidence of its impact was elusive. Collection of disability-disaggregated data posed significant challenges and made it difficult to demonstrate increased access to eye health programs by people with disabilities. CONCLUSIONS: Introduction of disability inclusion in eye health systems of countries with limited resources poses significant challenges. Future programs striving to improve access to eye health services for marginalized populations including people with disabilities might consider more flexible and contextualized approaches.

Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

Determinantes sociales de la salud y discapacidad: actualizando el modelo de determinación / Social determinants of health and disability: updating the model for determination

Los determinantes sociales de la salud (DSS) son las condiciones en las que las personas se desarrollan. Dichas condiciones impactan en sus vidas, condición de salud y nivel de inclusión social. Acorde a la evolución conceptual y de comprensión de la discapacidad, resulta importante actualizar los DSS por sus amplias implicancias en la ejecución de intervenciones de salud en la población. Esta propuesta fundamenta la incorporación de la discapacidad en el modelo como un determinante estructural, dado que produciría el mismo fenómeno de inclusión/exclusión social de las personas, descrito en otros DSS estructurales. Esta propuesta promueve un espacio relevante en el diseño y la implementación de políticas públicas con el fin de mejorar las condiciones de la población y contribuir a la equidad social. Esto será un acto de reparación, justicia y cumplimiento de la Convención sobre los Derechos de las Personas con Discapacidad (AU)

Social determinants of health (SDH) are conditions in which people live. These conditions impact their lives, health status and social inclusion level. In line with the conceptual and comprehensive progression of disability, it is important to update SDH due to their broad implications in implementing health interventions in society. This proposal supports incorporating disability in the model as a structural determinant, as it would lead to the same social inclusion/exclusion of people described in other structural SDH. This proposal encourages giving importance to designing and implementing public policies to improve societal conditions and contribute to social equity. This will be an act of reparation, justice and fulfilment with the Convention on the Rights of Persons with Disabilities (AU)

Development and perceived effects of an educational programme on quality and safety in medication handling in residential facilities.

OBJECTIVES: To develop and test an educational programme on quality and safety in medication handling for staff in residential facilities for the disabled. METHODS: The continuing pharmacy education instructional design model was used to develop the programme with 22 learning objectives on disease and medicines, quality and safety, communication and coordination. The programme was a flexible, modular seven + two days' course addressing quality and safety in medication handling, disease and medicines, and medication supervision and reconciliation. The programme was tested in five Danish municipalities. Municipalities were selected based on their application for participation; each independently selected a facility for residents with mental and intellectual disabilities, and a facility for residents with severe mental illnesses. Perceived effects were measured based on a questionnaire completed by participants before and after the programme. Effects on motivation and confidence as well as perceived effects on knowledge, skills and competences related to medication handling, patient empowerment, communication, role clarification and safety culture were analysed conducting bivariate, stratified analyses and test for independence. KEY FINDINGS: Of the 114 participants completing the programme, 75 participants returned both questionnaires (response rate = 66%). Motivation and confidence regarding quality and safety in medication handling significantly improved, as did perceived knowledge, skills and competences on 20 learning objectives on role clarification, safety culture, medication handling, patient empowerment and communication. CONCLUSIONS: The programme improved staffs' motivation and confidence and their perceived ability to handle residents' medication safely through improved role clarification, safety culture, medication handling and patient empowerment and communication skills.

Can a Unified Service Delivery Philosophy Be Identified in Aging and Disability Organizations? Exploring Competing Service Delivery Models Through the Voices of the Workforce in These Organizations.

Services for older adults and younger people with disabilities are increasingly merging, as reflected in the creation of Aging and Disability Resource Centers (ADRCs). Using ADRCs to coordinate services is challenging, primarily because these fields have different service delivery philosophies. Independent Living Centers, which serve people with disabilities, have a philosophy that emphasizes consumer control and peer mentoring. However, the aging service delivery philosophy is based in a case management or medical model in which the role of consumers directing their services is less pronounced. Using institutional logics theory and a qualitative research design, this study explored whether a unified service delivery philosophy for ADRCs was emerging. Based on focus groups and questionnaires with staff from ADRCs, findings revealed that competing service delivery models continue to operate in the aging and disability fields.

Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians.

BACKGROUND: Most research into clinical care of Duchenne or Becker dystrophinopathies (MD) has focused on slowing progressive muscular weakness and extending lifespan. Scarce attention has been paid to the "human" aspects of care such as psychosocial health, living a fulfilling life, or dealing with disability stigma. This study partnered with clinicians to identify and address local and systemic barriers to these human aspects of care. METHODS: We employed a participatory qualitative design at a multidisciplinary MD clinic using 2 methods: (a) ethnographic observations over a 6-month period of clinic visits of children with MD and families, involving 12 clinicians, and (b) 3 "dialogues" (2-way discussions) with these clinicians to collaboratively analyze practices and co-produce recommendations for change. RESULTS: Our methods produced rich data that, when coanalyzed with clinicians and in consultation with a family advisor, provided deep insights into the practices and underlying assumptions of a neuromuscular clinic. Staff recognized the importance of the human aspects of care but, in reviewing the observational data, identified that it was given insufficient attention in (a) routine clinical processes, (b) clinician-family patterns of interaction, and (c) staffing allocations. CONCLUSION: Although the human aspects of care were important to clinicians in the MD clinic, the routines and nature of the clinic meant these were frequently sidelined for biomedical objectives. We present collaboratively produced practical recommendations toward addressing this disjunction between ideals and practice including developing flexibility to tailor appointment frequency, composition, and length; providing time and physical space for psychosocial aspects of care; and clinician skill building to support child/family expression of "negative" emotions; and discussion of sociopolitical aspects of MD such as living with disability stigma. The study offers a set of considerations that, taking into account individual differences, offer insights for similar clinics elsewhere.

Determinación de la situación de dependencia funcional. Revisión sobre los instrumentos de evaluación más utilizados / Determination upon functional dependence situation. Reviewing the most used evaluation tools

Introducción: la medición de la situación de dependencia es un acto fundamental para las diferentes administraciones públicas con competencias en el campo de la salud y de los servicios sociales, para así poder planificar de forma idónea las políticas encaminadas a la atención e intervención en este ámbito. Objetivo: el objetivo del presente trabajo es analizar los instrumentos de valoración de la situación de dependencia más utilizados en España, informando de su contenido y sus campos de aplicación más relevantes. Del mismo modo, conocer en qué se diferencian estas escalas de medida, del baremo de valoración de dependencia utilizado como puerta de acceso al Sistema para la Autonomía y Atención a la Dependencia. Método: este estudio se lleva a cabo mediante una revisión bibliográfica en las siguientes bases de datos: Dialnet, Scopus, SciELO y Fisterra.com. Conclusiones: Tras la pertinente revisión de la literatura existente, los resultados apuntan a que, a causa de la variabilidad de contextos en los que se enmarcan las situaciones de dependencia, existen una gran variedad de instrumentos de medida

Background: the measure of the dependence situation is a fundamental act for the different public administration, which are concerned with the health and also the social services; therefore appropriate way to plan the policies toward the assistance and procedure as well at this field. Objective: the aim of the present work is analyzing the most used valuation tools in Spain about the dependence situation. Reporting upon its content and its outstanding application fields is the goal. Knowing about the differences between these measurement scales, in relation to the dependence evaluation rate, is other goal as well. These scales are used to access to the System for Autonomy and Assistance to Dependence. Method: this study is made through a bibliographic review in the following database: Dialnet, Scopus, SciELO and Fisterra.com. Conclusion: after the appropriate reviewing of currently literature, the results indicate a wide variety of measure tools in spite of the fact that there are a huge variety of possible contexts inner dependence

[Governance in a project addressing care of disabled elderly persons within the regional healthcare system of Tuscany, Italy]. / La governance nell'ambito del progetto per l'assistenza agli anziani non autosufficienti nel Sistema Sanitario Regionale Toscano.

Population aging and the concurrent increase of age-related chronic degenerative diseases and disability are associated with an increased proportion of elderly persons who are dependent in activities of daily living (ADL). ADL-dependent persons need continuous and long-term health and social care according to the "taking charge" rationale, in order to warrant access and continuity of care. A healthcare system needs to respond to the long-term and complex needs, such as those of disabled elderly people, by providing appropriate health and social care services in Primary Care. A Primary Health Care system is organized according to two governance levels have distinct aims but are closely inter-dependent in their operational mechanisms. The system governance is accountable for the community and individual health protection while the delivery governance is accountable for the provision of services in accordance with appropriateness, safety and economic criteria. Delivery governance can be considered "integrated governance" as a synergy exists between two decision-making systems guiding provider choices, which are corporate governance and clinical governance. The aim of this study was to analyse the abovementioned governance levels within the healthcare system in Tuscany (Italy) referring to long-term residential care for disabled elderly people. The case of excessive accesses to emergency departments from different types of Nursing Homes (NH) is used as an example to analyse different levels of responsibility involved in the management of a critical phenomenon. Suggestions for improvement in the different levels of governance for disabled elderly people are provided, in order to support institutional programming activities.

Disability evaluation and functional capacity evaluation (FCE): Is Spain ready for FCE? Is FCE ready for Spain? / Evaluación de la discapacidad y evaluación de la capacidad funcional (ECF): ¿está España preparada para la ECF? ¿Está la ECF preparada para España?

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Efectos sobre el codo de la resección de la cabeza radial por fractura aislada de la cabeza del radio en pacientes jóvenes / Effects on the elbow of radial head resection following isolated radial head fracture in young patients

Fundamento: La resección de la cabeza radial ha sido un tratamiento muy utilizado en casos de fractura no reconstruible de la cabeza del radio; algunos autores impulsan el uso de prótesis de cabeza radial. El propósito de este trabajo fue evaluar el resultado a largo plazo de la exéresis de la cabeza del radio por fractura aislada y su repercusión radiológica y funcional a nivel del codo. Pacientes y método. Se han revisado de forma retrospectiva cuarenta y cuatro historias clínicas de pacientes con resección de la cabeza del radio por fractura aislada, sin lesiones asociadas, en pacientes menores de cuarenta años y con un seguimiento mínimo de quince años. Se ha valorado la presencia de dolor, movilidad, fuerza y estabilidad del codo y se ha comparado con el lado contralateral sano. El estudio radiológico recoge la presencia de artrosis, calcificaciones, acortamiento del muñón proximal y medición del ángulo de carga. Se ha utilizado el cuestionario Dishabilities of the Arm, Shoulder and Hand (DASH) para valorar el grado de discapacidad percibido por el paciente. Resultados: El grupo de estudio se compone de diez mujeres y treinta y cuatro varones, con una edad media en el momento de la fractura de 28,6 años (rango 15-40) y un tiempo de evolución o seguimiento medio de 28,5 años (rango 16-38). La afectación en el lado dominante fue en treinta casos (23 diestros y 7 zurdos). Treinta y nueve pacientes (88,6%) no tenían dolor a nivel del codo y en el resto era leve o moderado. La pérdida de movilidad y fuerza respecto al lado contralateral fue de 1,5% para flexo-extensión, 3,5% para prono-supinación, 7,9% de fuerza de flexión y 3,5% de fuerza de extensión del codo. Se encontraron cuatro casos de inestabilidad en valgo y dos posterolateral rotatoria. La mediana del cuestionario DASH fue de 2,5 puntos (rango 0-30,8). Grados variables de artrosis están presentes en 93,3% de los codos y 54,4% de calcificaciones. El aumento medio del ángulo de carga fue de 7,7º respecto al lado sano (rango de 0,9 a 15,8º). Conclusiones: La resección de la cabeza radial por fractura aislada en pacientes jóvenes presenta unos resultados satisfactorios, con pérdidas muy bajas de movilidad y fuerza a nivel del codo. A pesar de la presencia alta de cambios artrósicos y menor de signos clínicos de inestabilidad, el dolor y discapacidad en el codo son muy bajos. En base a estos resultados, la resección de la cabeza radial es una técnica válida para fracturas aisladas incluso en pacientes jóvenes (AU)

Background: Radial head resection has been a widely used procedure in cases of non-reconstructable radial head fracture. Some authors propose the use of radial head arthroplasty. The purpose of this study was to evaluate the long-term outcome of radial head resection for isolated fracture, without instability at the time of the fracture, and its radiological and functional repercussions at the elbow level. Methods: We reviewed 44 clinical records with acute resection of the radial head following isolated radial head fracture, with absence of associated injuries, younger than forty, with a minimum follow-up of 15 years. Information was collected on elbow pain, biomechanical function, flexion and extension elbow strength and elbow instability compared with the non-affected side. A radiological study was conducted on all patients to determine the presence of degenerative changes, calcifications and measurement of the carrying angle. Outcomes were evaluated with Disabilities of the Arm, Shoulder and Hand score as an instrument to measure the patient’s perceived disability. Results: The group under study is made up of ten women and thirty-four men, with an average age at the time of fracture of 28.6 years (ranging from 15-40) and an average time since the fracture or follow-up time of 28.5 years (ranging from 16-38). The affectation was on the dominant side in thirty cases (23 right-handed and 7 left-handed). Thirty-nine patients (88.6%) had no elbow pain, and in all other cases was mild or moderate. Loss of mobility and strength was 1.5% for flexo-extension, 3.5% for prono-supination, 7.9% for flexion strength and 3.5% for extension strength. We appreciated four cases of valgus instability and two of postero-lateral instability. The average DASH score was 6.9 points. Radiographic changes of arthritis were present in 93.3% and 54.4% f calcifications. The mean increase of carrying angle was 7.7º compared with non-affected gide (ranking from 0.9-15.8º). Conclusion: Radial head resection for isolated fracture in young patients presents satisfactory results, with very low losses of elbow mobility and strength. Despite the high presence of osteoarthritic changes or lower clinical signs of instability, elbow pain and disability are very low. Our conclusion, based in these results, is that radial head resection is still a useful surgical procedure for isolated fractures even in young patients (AU)

Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

INTRODUCTION: At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. OBJECTIVE: The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. RESULTS: At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. CONCLUSION: By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.

[Infantile acquired brain injury, a personal experience. Demands from the socio-familial point of view]. / Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.

We report on the experience of a family in which the youngest child has acquired brain injury and the struggle undertaken by the family to improve the neurorehabilitation resources in the public health service. The article outlines the main demands, from the socio-familial point of view, as regards the improvement of neurological rehabilitation and the resources needed to deliver it.

TITLE: Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.Se describe la experiencia de una familia en la que el hijo menor tiene daño cerebral sobrevenido y la lucha emprendida por la familia para mejorar los recursos neurorrehabilitadores de la sanidad publica. Se recogen las principales reclamaciones, desde el punto de vista sociofamiliar, en cuanto a la mejora en la atencion neurorrehabilitadora y los recursos necesarios.