Examinando por Autor "Martinez Gutierrez, Oscar"

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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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    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.