Examinando por Autor "Berrocoso Cascallana, Sarah"

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    Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers
    (BioMed Central Ltd, 2020-10-19) Berrocoso Cascallana, Sarah; Amayra Caro, Imanol; Lázaro Pérez, Esther; Martínez, Óscar; López Paz, Juan Francisco; García Martín, Maitane; Pérez Álvarez, Manuel; Al-Rashaida, Mohammad Ali Hussein; Rodríguez Bermejo, Alicia Aurora; Luna Ovalle, Paula; Pérez Núñez, Paula; Blanco, Raquel; Nevado, Julián
    Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents’ QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles.
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    Diseases costs and impact of the caring role on informal carers of children with neuromuscular disease
    (MDPI AG, 2021-03-15) Rodríguez Bermejo, Alicia Aurora ; Martinez Gutierrez, Oscar ; Amayra Caro, Imanol ; López Paz, Juan Francisco; Al-Rashaida, Mohammad Ali Hussein ; Lázaro Pérez, Esther; Caballero, Patricia ; Pérez Álvarez, Manuel ; Berrocoso Cascallana, Sarah; García Martín, Maitane; Luna Ovalle, Paula ; Pérez Núñez, Paula ; Passi, Nicole
    This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis.
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    Effects of teleassistance on the quality of life of people with rare neuromuscular diseases according to their degree of disability
    (Frontiers Media S.A., 2021-03) Martínez, Óscar; Amayra Caro, Imanol; López Paz, Juan Francisco; Lázaro Pérez, Esther; Caballero, Patricia; García Urquiza, Irune; Rodríguez Bermejo, Alicia Aurora; García Martín, Maitane; Luna Ovalle, Paula; Pérez Núñez, Paula; Barrera, Jaume; Passi, Nicole; Berrocoso Cascallana, Sarah; Pérez Álvarez, Manuel; Al-Rashaida, Mohammad Ali Hussein
    Rare neuromuscular diseases (RNMDs) are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life (QoL) levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the QoL levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group (n = 40), which participated in the intervention, and a control wait list group (n = 33). QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability.
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    Estudio comparativo de la eficacia de un programa de teleasistencia dirigido a cuidadores de niños y adolescentes con enfermedades raras
    (Universidad de Deusto, 2022-06-29) Berrocoso Cascallana, Sarah; Amayra Caro, Imanol; Facultad de Psicología y Educación; Programa de Doctorado en Psicología por la Universidad de Deusto
    La definición de enfermedades raras viene acompañada de cifras que varían según la patología e incluso atendiendo a zonas geográficas, pero ser uno entre 10.000 no sólo refleja una baja prevalencia de una enfermedad con respecto al resto de la población. Con frecuencia, padecer una enfermedad rara está asociado a la dificultad por conseguir un diagnóstico, a la falta de información sobre la enfermedad y de herramientas apropiadas para su valoración y enfrentarse a necesidades clínicas o sociales sin respuesta. Pero también se une a otras dificultades como los sentimientos de incomprensión, soledad e incertidumbre ante el desconocimiento de la enfermedad, en las que tanto los pacientes como sus familias se ven inmersos. Muchas de las enfermedades raras son genéticas o tienen su debut en la infancia, esto genera en las familias la aparición de problemáticas que van más allá de la salud o el pronóstico y que afectan también a los dominios social, económico y psicológico. Esta tesis doctoral tiene como objetivo principal dar respuesta a alguna de las necesidades psicosociales reportadas en la literatura en el colectivo de cuidadores de niños y jóvenes con una enfermedad rara, y en particular, el Síndrome de Wolf-Hirschhorn (SWH) en España. Para ello la presente tesis comienza con una revisión teórica sobre las enfermedades raras, el SWH y las necesidades ligadas al cuidado en las familias. Específicamente, se ahondará en el impacto de la situación de cuidado, la calidad de vida (Qol) y las estrategias de afrontamiento. Se discutirá acerca de las herramientas de valoración que desde nuestro ámbito se dispone para analizar la realidad de este colectivo, así como, de las estrategias de apoyo desarrolladas para dar respuesta a estas necesidades. La segunda parte de este trabajo presentará la justificación de los tres estudios que componen el cuerpo de la tesis doctoral, así como, los objetivos de cada uno de ellos. El siguiente apartado del trabajo incluirá el primero de los estudios cuyo objetivo fue el de adaptar y validar para muestra española el cuestionario Assessment of Caregiver Experience with Neuromuscular Diseases - ACEND (Matsumoto et al., 2011), una herramienta específica desarrollada para la valoración del estado funcional de niños y jóvenes con desórdenes neuromusculares y del impacto en la calidad de vida de sus cuidadores. Este cuestionario mostró unas puntuaciones psicométricas adecuadas y una estructura resultante de tres factores, además, se confirmó su validez convergente con escalas para la valoración del estado funcional y sobrecarga del cuidado. El segundo de los estudios tuvo como objetivo conocer el perfil sociodemográfico y psicosocial de los cuidadores de SWH y analizar el impacto de esas variables en su calidad de vida y bienestar. Los resultados y publicación de este estudio permitieron reportar por primera vez en la literatura las necesidades psicosociales de este colectivo y su relación con la de otros familiares de niños con enfermedades raras y/o crónicas. El perfil resultante mostró la repercusión de la aparición de sintomatología en la calidad de vida de los cuidadores, pero también como el uso de estrategias de afrontamiento por parte de éstos estaba asociado a una mejora en esta variable y en el apoyo social. Una vez conocido el impacto psicosocial del SWH en las familias y aquellas variables relacionadas con una mejora del bienestar percibido por los cuidadores, el tercer y último estudio de esta tesis, tuvo el objetivo de diseñar, pilotar y evaluar los resultados de un programa de apoyo online titulado Neuro-e-Motion I-Care destinado a este colectivo. El programa se basó en aquellas intervenciones más valoradas en la literatura científica para la disminución de las consecuencias del impacto del cuidado, mejora de las estrategias de afrontamiento y calidad de vida de los padres y madres de niños con enfermedades crónicas. Por las características y la experiencia con este colectivo se optó por la Terapia de Aceptación y Compromiso y dinámicas ligadas a la psicoeducación, Terapia Cognitivo-Conductual y la de Resolución de Problemas. Los resultados preliminares de este programa de apoyo online para padres mostraron una mejora en el dominio psicológico de la calidad de vida y diferencias significativas en el empleo de estrategias de afrontamiento adecuadas centradas en la emoción, así como, la reducción de sintomatología somática frente a un grupo control. Además, las madres que participaron en la intervención reportaron la utilidad del contenido trabajado en las sesiones en su vida cotidiana y el surgimiento de sentimientos de comprensión y apoyo por los participantes del grupo. Tras la presentación de los tres estudios, se pasará a integrar sus resultados en una discusión común en las que se analizarán los hallazgos e implicaciones teóricas y clínicas de éstos. Este apartado también expondrá las limitaciones encontradas en los estudios y líneas futuras de investigación para después dar paso a las conclusiones generales de este proyecto. La parte final de esta tesis concluye presentando el manual de intervención del programa Neuro-e-Motion I-Care.
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    Intrusion errors during verbal fluency task in amyotrophic lateral sclerosis
    (Public Library of Science, 2020-05-29) Pérez Álvarez, Manuel; Amayra Caro, Imanol; Lázaro Pérez, Esther; García Martín, Maitane; Martínez, Óscar; Caballero, Patricia; Berrocoso Cascallana, Sarah; López Paz, Juan Francisco; Al-Rashaida, Mohammad Ali Hussein; Rodríguez Bermejo, Alicia Aurora; Luna Ovalle, Paula; Varona, Luis
    Background Numerous studies have noted the presence of a dysexecutive component of the ALS-FTD. The most widely replicated result refers to the significantly reduced verbal fluency of ALS patients when compared to healthy people. As ALS patients have motor alterations that interfere with production, qualitative studies have the advantage of being independent of the degree of motor disability and revealing patients' cognitive state. This study examined the production differences between 42 ALS patients who presented with different degrees of dementia and motor impairment and 42 healthy people. Production processes were studied by extending the administration time of a letter fluency task to 2 minutes for the phonemic verbal fluency (PVF) and semantic verbal fluency (SVF) categories. This ensured that the qualitative aspects of verbal fluency were addressed, paying special attention to the new perseverations and intrusions, as well as any clinical correlates that may exist. Results The ALS patients produced a significantly lower number of responses in PVF (p = .017) and SVF (p = .008). The rest of the indicators for frontal lobe alteration also suggested the existence of a dysfunction. The most remarkable results were the number of intrusions on the PVF task, which was much higher in the ALS group (p = .002). However, the number of perseverations did not differ significantly. Conclusions This study highlights the value of intrusions in addressing cognitive deterioration in ALS patients. This deterioration seems to be independent of the degree of motor impairment and of behavioural alterations. Therefore, the value of the intromissions on the verbal fluency task was highlighted as an indicator of a new cognitive alteration, which can be easily evaluated, even retrospectively.
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    Music therapy and Sanfilippo syndrome: an analysis of psychological and physiological variables of three case studies
    (BioMed Central Ltd, 2021-11-20) Pérez Núñez, Paula; Lázaro Pérez, Esther ; Amayra Caro, Imanol ; López Paz, Juan Francisco; Caballero, Patricia; Martinez Gutierrez, Oscar; Pérez, Manuel; Berrocoso Cascallana, Sarah; Al-Rashaida, Mohammad Ali Hussein; García Martín, Maitane; Rodríguez Bermejo, Alicia Aurora; Luna Ovalle, Paula
    Introduction: Mucopolysaccharidosis type III (MPS III) or Sanfilippo syndrome is a neurodegenerative disease caused by the accumulation of mucopolysaccharides in the body. As the symptoms are wide ranging, it is a challenge to provide a diagnosis and psychological treatment for affected children. Method: The main objective of this study was to describe a form of music therapy treatment applied to three children diagnosed with MPS III. The psychological variables were evaluated by an ad hoc observation recording template, and the physiological variables were measured with a digital meter before and after each session. The perception of the parents was also considered through a semi-structured interview. Results: An improvement in the psychological variables was shown in all cases. Changes in the physiological variables were also noted, although they varied according to each child. The parents report some benefit of music therapy and they share difficulty in assessing the extent of benefits of the music therapy. Discussion: Findings indicate that music therapy can be a useful form of treatment with multiple benefits for children with conditions such as MPS III or similar conditions. However, further research is needed in this area and in the development of specific ways of evaluating music therapy.
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    Social cognition in Chiari Malformation Type I: a preliminary characterization
    (Springer, 2020-06) García Martín, Maitane; Amayra Caro, Imanol; López Paz, Juan Francisco; Martínez, Óscar; Lázaro Pérez, Esther; Pérez Álvarez, Manuel; Berrocoso Cascallana, Sarah; Al-Rashaida, Mohammad Ali Hussein; Infante, Jon
    Chiari malformation type I (CM-I) is a neurological disorder in which cerebellar tonsils are herniated through the foramen magnum into the spinal canal. A wide spectrum of cognitive deficits underlying this pathology has been reported, but the literature about social cognition is insufficient. Clinical research has pointed out the cerebellar role in Theory of Mind (ToM), indicating that there are several disorders with cerebellar pathology that reveal a poorer performance in social cognition tasks. The main purpose of this study is to compare the performance on ToM tasks between CM-I patients and healthy controls. The protocol includes Faux Pas test, Happé’s Strange Stories test, Ice-Cream Van task, the FEEL test, and the Word Accentuation Test. In order to eliminate the possible influence of covariables, physical pain and anxious-depressive symptomatology have been controlled for. According to the results, CM-I patients performed worse than matched healthy controls on ToM tasks, except for facial emotion recognition. These differences remained even after controlling for the neuropsychiatric variables and physical pain. Thus, it can be suggested that patients with CM-I are impaired in their social skills related to their performance on ToM tasks. These findings can be considered to be a preliminary approach to the specific study of social cognition in relation to CM-I since it is similar to other cerebellar pathologies and to previous literature on the cerebellum’s role in social cognition
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    Using a virtual serious game (Deusto-e-motion1.0) to assess the theory of mind in primary school children: observational descriptive study
    (JMIR Publications Inc., 2020-04-02) Lázaro Pérez, Esther; Amayra Caro, Imanol; López Paz, Juan Francisco; Martínez, Óscar; Pérez Álvarez, Manuel; Berrocoso Cascallana, Sarah; Al-Rashaida, Mohammad Ali Hussein; García Martín, Maitane; Luna Ovalle, Paula; Pérez Núñez, Paula; Rodríguez Bermejo, Alicia Aurora; Fernández, Paula; Parada Fernández, Pamela; Oliva Macías, Mireia
    Background: Given the interactive media characteristics and intrinsically motivating appeal, virtual serious games are often praised for their potential for assessment and treatment. Objective: This study aims to validate and develop normative data for a virtual serious game (Deusto-e-motion1.0) for the evaluation of emotional facial expression recognition and social skills, both of which are components of the theory of mind. Methods: A total of 1236 children took part in the study. The children were classified by age (8-12 years old), gender (males=639, females=597), and educational level (between the third and sixth years of Primary Education). A total of 10 schools from the Basque Country and 20 trained evaluators participated in this study. Results: Differences were found in Deusto-e-motion1.0 scores between groups of children depending on age and gender. Moreover, there was a moderately significant correlation between the emotional recognition scores of Deusto-e-motion1.0 and those of the Feel facial recognition test. Conclusions: Deusto-e-motion1.0 shows concurrent validity with instruments that assess emotional recognition. Results support the adequacy of Deusto-e-motion1.0 in assessing components of the theory of mind in children.