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1.
Epilepsy Behav ; 154: 109726, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38513571

RESUMEN

BACKGROUND: A pathogenic variant in SCN1A can result in a spectrum of phenotypes, including Dravet syndrome (DS) and genetic epilepsy with febrile seizures plus (GEFS + ) syndrome. Dravet syndrome (DS) is associated with refractory seizures, developmental delay, intellectual disability (ID), motor impairment, and challenging behavior(1,2). GEFS + is a less severe phenotype in which cognition is often normal and seizures are less severe. Challenging behavior largely affects quality of life of patients and their families. This study describes the profile and course of the behavioral phenotype in patients with SCN1A-related epilepsy syndromes, explores correlations between behavioral difficulties and potential risk factors. METHODS: Data were collected from questionnaires, medical records, and semi-structured interviews. Behavior difficulties were measured using the Adult/Child Behavior Checklist (C/ABCL) and Adult self-report (ASR). Other questionnaires included the Pediatric Quality of Life Inventory (PedsQL), the Functional Mobility Scale (FMS) and the Sleep Behavior Questionnaire by Simonds & Parraga (SQ-SP). To determine differences in behavioral difficulties longitudinally, paired T-tests were used. Pearson correlation and Spearman rank test were used in correlation analyses and multivariable regression analyses were employed to identify potential risk factors. RESULTS: A cohort of 147 participants, including 107 participants with DS and 40 with genetic epilepsy with febrile seizures plus (GEFS + ), was evaluated. Forty-six DS participants (43.0 %) and three GEFS + participants (7.5 %) showed behavioral problems in the clinical range on the A/CBCL total problems scale. The behavioral profile in DS exists out of withdrawn behavior, aggressive behavior, and attention problems. In DS patients, sleep disturbances (ß = 1.15, p < 0.001) and a lower age (ß = -0.21, p = 0.001) were significantly associated with behavioral difficulties. Between 2015 and 2022, behavioral difficulties significantly decreased with age (t = -2.24, CI = -6.10 - -0.15, p = 0.04) in DS participants aging from adolescence into adulthood. A decrease in intellectual functioning (ß = 3.37, p = 0.02) and using less antiseizure medications in 2022 than in 2015, (ß = -1.96, p = 0.04), were identified as possible risk factors for developing (more) behavioral difficulties. CONCLUSIONS: These findings suggest that, in addition to epilepsy, behavioral difficulties are a core feature of the DS phenotype. Behavioral problems require personalized management and treatment strategies. Further research is needed to identify effective interventions.


Asunto(s)
Canal de Sodio Activado por Voltaje NAV1.1 , Humanos , Masculino , Femenino , Canal de Sodio Activado por Voltaje NAV1.1/genética , Adulto , Niño , Adolescente , Adulto Joven , Preescolar , Epilepsias Mioclónicas/genética , Epilepsias Mioclónicas/psicología , Epilepsias Mioclónicas/complicaciones , Calidad de Vida , Síndromes Epilépticos/genética , Síndromes Epilépticos/psicología , Trastornos del Neurodesarrollo/genética , Trastornos del Neurodesarrollo/psicología , Trastornos del Neurodesarrollo/etiología , Convulsiones Febriles/genética , Convulsiones Febriles/psicología , Convulsiones Febriles/complicaciones , Problema de Conducta/psicología , Epilepsia/genética , Epilepsia/psicología , Epilepsia/complicaciones
2.
Pediatr Phys Ther ; 36(1): 95-103, 2024 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-38227754

RESUMEN

PURPOSE: To explore the influence of preterm birth on parental beliefs about gross motor development and parents' supportive role in infants' motor development. METHODS: Prospective cohort study: Parents of infants born very preterm (VPT) (gestation ≤32 weeks, birth weight <1500 g, without perinatal complications) and parents of healthy infants born full-term (FT) completed the Parental Beliefs on Motor Development questionnaire. RESULTS: Questionnaires from 37 parents of infants born VPT, aged 3.5 to 7.5 months (corrected), and 110 parents of infants born FT, aged 3.5 months, were analyzed. Parents of infants born VPT believed stimulating motor development to be more important than parents of infants born FT (F = 5.22; P = .024; ηp2 = 0.035). Most parents of infants born VPT (82.4%) and FT (85.2%) acknowledged their role in supporting motor development. More parents of infants born VPT (41.2% vs 12.0%) believed they should follow their infant's natural developmental pace. CONCLUSION: Knowledge of parental beliefs and parents' supporting role in motor development is relevant for tailoring pediatric physiotherapists' interventions with families.


Asunto(s)
Recien Nacido Extremadamente Prematuro , Nacimiento Prematuro , Lactante , Femenino , Niño , Recién Nacido , Humanos , Estudios de Cohortes , Estudios Prospectivos , Padres , Recién Nacido de muy Bajo Peso
3.
Epilepsy Behav ; 138: 108978, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36495797

RESUMEN

BACKGROUND: Dravet syndrome (DS) is a monogenic syndrome associated with SCN1A mutations in the majority of patients and characterized by devastating epilepsy, that may be life-threatening. Aside from refractory seizures, core symptoms of DS include behavioral difficulties, developmental delay, cognitive impairment, and motor dysfunction. Previous DS research has mainly focused on epileptic seizures and pharmacological management and less on behavioral difficulties. This study aims to explore the lived experience of parents supporting a child with DS, with a focus on behavioral aspects. METHODS: We performed a qualitative study using focus groups and following the consolidated criteria for reporting qualitative research (COREQ) guidelines. We organized three focus groups with parents of children and adults with DS and used a pre-defined topic list of open questions, similar for each focus group to ensure comparability. The focus groups were video recorded, transcribed, and anonymized. Data were analyzed using an iterative coding process where codes were sorted into themes. Differences in coding among the researchers were discussed until a consensus was reached. RESULTS: In total, twenty parents (mothers only) participated in the study. The age of children with DS ranged between 3 to 22 years with a mean age of 11.8 years. A range of behavioral difficulties emerged from the thematic analysis. Overall, the most commonly mentioned behavioral difficulties were aggression, dangerous behavior, impulsivity, hyperactivity, routinized and compulsive habits. Our results showed different behavior per age group, with more externalizing behaviors such as aggression and impulsivity in children aged 3-13 years; and more internalizing behavior such as routinized and compulsive habits in adolescents and young adults (14-22 years). This results in a different kind of support these families need and should be acknowledged when in consult with a healthcare professional. Parents reported that challenging behavior was a source of stress and impacted negatively on their family's quality of life. Parents reported feeling alone in their search for solutions, and many explored options outside the traditional medical context. CONCLUSION: Our results suggest that the challenging behavior associated with DS leads to a huge burden of care. Healthcare professionals working with DS patients may need to develop shared decision-making strategies that take into account challenging behavior.


Asunto(s)
Epilepsias Mioclónicas , Epilepsia , Adulto Joven , Niño , Humanos , Adolescente , Calidad de Vida , Epilepsias Mioclónicas/diagnóstico , Epilepsia/diagnóstico , Convulsiones/psicología , Padres
4.
Nurs Crit Care ; 26(3): 201-208, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33124117

RESUMEN

BACKGROUND: Admission of an infant to a neonatal intensive care unit (NICU) is often a stressful experience for parents and can be associated with feelings of inadequacy to fulfil the desirable parental role. The values, opportunities, integration, control, and evaluation (VOICE) programme was developed to engage parents in care, to decrease stress, and to increase empowerment. AIM: To explore the experiences of parents regarding involvement in the VOICE programme during admission of their infant to the NICU. DESIGN: The VOICE programme includes at least five personal structured meetings between parents, nurses, and other health care professionals throughout the pathway from birth, NICU, and follow up. A qualitative design was adopted using semi-structured interviews. Interviews with 13 parents of 11 infants born at <27 weeks' gestational age were conducted: nine mothers and two couples of father and mother. Thematic analysis was deployed. RESULTS: The findings have been described in one overarching theme: "parental empowerment." Parents felt strengthened and were empowered in the development of their role as primary caretaker by the VOICE programme. The parental empowerment theme emerged from four related interpretive themes that were derived: (a) involvement in care, (b) personalized information and communication, (c) transition to a parental role, and (d) emotional support. CONCLUSION: The VOICE programme can be a structured approach used to implement family support in a NICU to empower parents to become a partner in the care of their infant and feel confident. RELEVANCE TO CLINICAL PRACTICE: This study encourages health care professionals to provide parental support through a structured intervention programme, which contributes to the empowerment of parents in the NICU and encouraged them to participate in care and decision-making.


Asunto(s)
Recien Nacido Prematuro , Unidades de Cuidado Intensivo Neonatal , Comunicación , Personal de Salud , Humanos , Lactante , Recién Nacido , Padres
5.
PLoS One ; 15(7): e0235311, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32628734

RESUMEN

OBJECTIVE: This study aimed to define the prevalence and predictors of non-right-handedness and its link to long-term neurodevelopmental outcome and early neuroimaging in a cohort of children born extremely preterm (<28 weeks gestation). METHODS: 179 children born extremely preterm admitted to the Neonatal Intensive Care Unit of our tertiary centre from 2006-2013 were included in a prospective longitudinal cohort study. Collected data included perinatal data, demographic characteristics, neurodevelopmental outcome measured by the Bayley Scales of Infant and Toddler Development at 2 years and the Movement Assessment Battery for Children at 5 years, and handedness measured at school age (4-8 years). Magnetic resonance imaging performed at term-equivalent age was used to study overt brain injury. Diffusion tensor imaging scans were analysed using tract-based spatial statistics to assess white matter microstructure in relation to handedness and neurodevelopmental outcome. RESULTS: The prevalence of non-right-handedness in our cohort was 22.9%, compared to 12% in the general population. Weaker fine motor skills at 2 years and paternal non-right-handedness were significantly associated with non-right-handedness. Both overt brain injury and fractional anisotropy of white matter structures on diffusion tensor images were not related to handedness. Fractional anisotropy measurements showed significant associations with neurodevelopmental outcome. CONCLUSIONS: Our data show that non-right-handedness in children born extremely preterm occurs almost twice as frequently as in the general population. In the studied population, non-right-handedness is associated with weaker fine motor skills and paternal non-right-handedness, but not with overt brain injury or microstructural brain development on early magnetic resonance imaging.


Asunto(s)
Encéfalo/crecimiento & desarrollo , Desarrollo Infantil/fisiología , Imagen de Difusión Tensora/estadística & datos numéricos , Lateralidad Funcional/fisiología , Recien Nacido Extremadamente Prematuro/crecimiento & desarrollo , Encéfalo/diagnóstico por imagen , Encéfalo/fisiología , Niño , Preescolar , Discapacidades del Desarrollo/diagnóstico , Discapacidades del Desarrollo/epidemiología , Femenino , Humanos , Recién Nacido , Estudios Longitudinales , Masculino , Estudios Prospectivos
6.
Child Care Health Dev ; 45(5): 623-636, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31276605

RESUMEN

BACKGROUND: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. METHODS: In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. RESULTS: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. CONCLUSION: Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.


Asunto(s)
Niños con Discapacidad/rehabilitación , Empoderamiento , Intervención basada en la Internet , Padres/psicología , Relaciones Profesional-Familia , Adolescente , Actitud del Personal de Salud , Actitud Frente a la Salud , Niño , Preescolar , Estudios de Cohortes , Femenino , Educación en Salud , Humanos , Lactante , Recién Nacido , Masculino , Países Bajos , Satisfacción del Paciente , Autoeficacia , Encuestas y Cuestionarios , Adulto Joven
7.
Pediatr Res ; 85(1): 43-49, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30254237

RESUMEN

BACKGROUND: Hypoxic-ischemic encephalopathy (HIE) in term-born infants can lead to memory problems. The hippocampus is important for long-term episodic memory. The primary aim was to investigate the effect of HIE on hippocampal volumes in 9- to 10-year-old children. The secondary aim was to investigate the association between hippocampal volumes and previously found impaired memory and cognitive functions in the current cohort. METHODS: In total 26 children with mild HIE, 26 with moderate HIE, and 37 controls were included. The intelligence quotient (IQ) and memory were tested. A 3D-volumetric MRI was obtained. Brain segmentation was performed for hippocampal volumes and intracranial volume. The differences in hippocampal volumes, memory, and IQ between the groups were determined. Multivariable linear regression analyses were performed, including hippocampal volume as a percentage of intracranial volume as a dependent variable. RESULTS: Smaller hippocampal volumes were found in moderate HIE (p < 0.001), with a trend toward smaller volumes in mild HIE, compared to controls. In multivariable linear regression analysis, hippocampal volume as a percentage of intracranial volume was significantly associated with long-term visuospatial memory. CONCLUSION: Children with moderate HIE had smaller hippocampal volumes than controls, with a trend toward smaller volumes following mild HIE. Reduced hippocampal volumes were associated with poorer long-term visuospatial memory.


Asunto(s)
Desarrollo Infantil , Hipocampo/diagnóstico por imagen , Hipoxia-Isquemia Encefálica/diagnóstico por imagen , Imagen por Resonancia Magnética , Factores de Edad , Estudios de Casos y Controles , Niño , Conducta Infantil , Cognición , Femenino , Hipocampo/crecimiento & desarrollo , Humanos , Hipoxia-Isquemia Encefálica/complicaciones , Hipoxia-Isquemia Encefálica/fisiopatología , Hipoxia-Isquemia Encefálica/psicología , Pruebas de Inteligencia , Masculino , Memoria , Trastornos de la Memoria/diagnóstico , Trastornos de la Memoria/etiología , Trastornos de la Memoria/psicología , Valor Predictivo de las Pruebas , Factores de Tiempo
8.
Neurosci Biobehav Rev ; 80: 382-393, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28642071

RESUMEN

The current review focuses on evidence for a link between early motor development and later cognitive skills in children born preterm or with Low Birth Weight (LBW). Studies with term born children consistently show such a link. Motor and cognitive impairments or delays are often seen in children born preterm or with LBW throughout childhood and studies have established a cross-sectional association between the two. However, it is not yet clear if, and if so, how, motor and cognitive skills are longitudinally interrelated in these children. Longitudinal studies with this population including measures of motor development during the first year of life and cognitive measures at later measurement points were included. The 17 studies included usually show a link between level and/or quality of motor development during the first year of life and later cognitive skills in children born preterm and/or with LBW. However, given the small number of studies, and a possible effect of early interaction between motor and cognitive skills affecting this relation, more work is clearly needed.


Asunto(s)
Desarrollo Infantil , Cognición , Recién Nacido de Bajo Peso , Recien Nacido Prematuro , Destreza Motora , Desarrollo Infantil/fisiología , Cognición/fisiología , Humanos , Recién Nacido de Bajo Peso/fisiología , Recién Nacido de Bajo Peso/psicología , Recién Nacido , Recien Nacido Prematuro/fisiología , Recien Nacido Prematuro/psicología , Destreza Motora/fisiología
9.
BMC Pediatr ; 17(1): 12, 2017 01 11.
Artículo en Inglés | MEDLINE | ID: mdl-28077123

RESUMEN

BACKGROUND: Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents' own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review. METHODS: A qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework. RESULTS: Analysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents' actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented. CONCLUSIONS: Parents' actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.


Asunto(s)
Niños con Discapacidad/rehabilitación , Relaciones Padres-Hijo , Responsabilidad Parental/psicología , Padres/psicología , Participación Social , Actividades Cotidianas , Niño , Preescolar , Ambiente , Femenino , Humanos , Masculino , Evaluación de Necesidades , Países Bajos , Investigación Cualitativa , Instituciones Académicas , Medio Social , Apoyo Social
10.
Res Dev Disabil ; 60: 162-175, 2017 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-27984818

RESUMEN

BACKGROUND AND AIMS: Children with DCD have lower self-perceptions and are less physically active than typically developing children. The aim of this quasi-experimental study was to investigate whether an integrated perceived competence and motor intervention affects DCD children's motor performance, self-perceptions, and physical activity compared with a motor intervention only. METHODS AND PROCEDURES: The intervention group consisted of 20 children and the care-as-usual group consisted of 11 children, all aged 7-10 years. The perceived competence component of the intervention focused primarily on providing positive, specific, and progress feedback to enhance self-perceptions. We assessed children at baseline, after 12 treatment sessions (trial end-point), and at 3-month follow-up. OUTCOMES AND RESULTS: Mixed linear models revealed no differences between the intervention and the care-as-usual group on any of the outcome measures. Children improved their motor performance and increased their perceived athletic competence, global self-esteem, and perceived motor competence after 12 treatment sessions. This improvement was maintained at 3-month follow-up. Motor task values and physical activity remained unchanged for all children. CONCLUSIONS AND IMPLICATIONS: A perceived competence and motor intervention is as effective as care-as-usual in children with DCD. Future research should focus on improving physical activity in children with DCD. WHAT THIS PAPER ADDS: This is the first study that has investigated the effect of an integrated perceived competence and motor intervention (intervention group) on motor performance, self-perceptions, and physical activity compared with a motor intervention (care-as-usual group) in children with DCD. We made the perceived competence component explicit by providing positive, specific, and progress feedback to enhance children's self-perceptions. Also, this is one of the first studies that has investigated the effect after both 12 treatment sessions (trial end-point) and after 3 months of no intervention (3-month follow-up). We found no differences between the intervention and the care-as-usual group, but children improved their motor performance and increased (most) of their self-perceptions after 12 treatment sessions, while physical activity remained the same. The improvement was still present at the 3-month follow-up. We also benchmarked our results about self-perceptions and physical activity to a group of typically developing children. Self-perceptions in children with DCD had improved to the level of typically developing children after 12 treatment sessions, but their physical activity levels remained significantly lower. This result was the same at the 3-month follow-up, except for perceived athletic competence, which was lower in children with DCD at the 3-month follow-up. In accordance with previous intervention studies that have investigated children with DCD, we found large intra-group variability in the change in motor performance and self-perceptions in children with DCD. We argue that we need to better understand why some children with DCD improve and others do not after a motor intervention.


Asunto(s)
Trastornos de la Destreza Motora/rehabilitación , Modalidades de Fisioterapia , Autoimagen , Rendimiento Atlético , Estudios de Casos y Controles , Niño , Ejercicio Físico , Femenino , Humanos , Masculino , Destreza Motora , Trastornos de la Destreza Motora/psicología
11.
Fam Process ; 56(3): 781-792, 2017 09.
Artículo en Inglés | MEDLINE | ID: mdl-27245266

RESUMEN

It has been hypothesized that adult attachment representations guide caregiving behavior and influence parental sensitivity, and thus affect the child's socio-emotional development. Several studies have shown a link between posttraumatic stress disorder (PTSD) and reduced parental sensitivity, so it is possible that PTSD moderates the relationship between insecure attachment representations and insensitivity. In this study symptoms of PTSD (Harvard Trauma Questionnaire), parental sensitivity (Emotional Availability Scales), and attachment representations (Attachment Script Assessment) were assessed in 53 parents who were asylum seekers or refugees. Results showed that when parents were less able to draw on secure attachment representations, symptoms of PTSD increased the risk of insensitive parenting. These findings suggest that parental sensitivity is affected not just by attachment representations, but by a conjunction of risk factors including symptoms of PTSD and insecure attachment representations. These parents should therefore be supported to establish or confirm secure models of attachment experiences, to facilitate their ability interact sensitively and form a secure relationship with their children.


Asunto(s)
Apego a Objetos , Padres/psicología , Refugiados/psicología , Trastornos por Estrés Postraumático/psicología , Adulto , Femenino , Humanos , Entrevistas como Asunto , Masculino , Responsabilidad Parental , Investigación Cualitativa , Trastornos por Estrés Postraumático/diagnóstico , Adulto Joven
12.
Early Hum Dev ; 103: 155-160, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-27689894

RESUMEN

OBJECTIVE: Problems in early development of executive functioning may underlie the vulnerability and individual variability of infants born preterm for behavioral and learning problems. Parenting behaviors may aggravate or temper this increased risk for dysfunction. This study assessed how maternal parenting behaviors predict individual differences in early development of executive functioning in infants born preterm, and whether this varies with infant temperament, i.e., self-regulation. METHODS: Participants were 76 infants born preterm (≤36weeks' gestation and <2500g birth weight) and their mothers. Maternal sensitive responsiveness and directiveness were observed during a mother-infant interaction situation at 7, 10 and 14months corrected age. At the same ages, executive functioning was measured using the A-not-B task. An infant self-regulation questionnaire (IBQ-R) was completed by mothers at 7months. RESULTS: After controlling for perinatal risk factors, Multivariate Latent Growth Modeling showed that consistently higher levels of maternal directiveness predicted a stronger increase in A-not-B performance, which did not vary with infant self-regulation. No relationship between maternal sensitive responsiveness and development in A-not-B performance in infants born preterm was found. CONCLUSIONS: These results suggest that preterm infants' early executive functioning development in the first year of life may benefit from a more and consistent directive approach by their mothers. These findings have important implications for early intervention programs aimed at facilitating preterm infants' development.


Asunto(s)
Función Ejecutiva , Recien Nacido Prematuro/crecimiento & desarrollo , Conducta Materna , Adulto , Femenino , Humanos , Recién Nacido , Recien Nacido Prematuro/psicología , Masculino , Relaciones Madre-Hijo
13.
Phys Occup Ther Pediatr ; 36(4): 363-75, 2016 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-27593569

RESUMEN

AIMS: To (1) describe the child- and context-focused behaviors of physical and occupational therapists, and (2) compare the behaviors of therapists in a standard therapy session with those of therapists trained to deliver child- and context-focused services. METHOD: Videos of 49 therapy sessions provided by 36 therapists were analyzed using the intervention domains of the Paediatric Rehabilitation Observational measure of Fidelity (PROF) to examine the therapeutic behaviors of physical and occupational therapists with young children with cerebral palsy (CP) (24 to 48 months) in a Dutch rehabilitation setting. The PROF ratings of 18 standard therapy sessions were compared with the ratings of 16 child- and 15 context-focused therapy sessions. RESULTS: Therapists who provided standard therapy demonstrated a mix of child- and context-focused behaviors. PROF ratings indicated fewer child- and context-focused behaviors during standard therapy sessions compared with sessions where therapists were instructed to use either child- or context-focused behaviors. CONCLUSIONS: A sample of Dutch physical and occupational therapists of young children with CP demonstrated a mix of child- and context-focused therapy behaviors during standard therapy. Further research is recommended on clinical reasoning and the effect of setting to better understand therapists' use of child- and context-focused behaviors during therapy sessions.


Asunto(s)
Parálisis Cerebral/rehabilitación , Terapeutas Ocupacionales , Terapia Ocupacional/métodos , Fisioterapeutas , Modalidades de Fisioterapia , Actividades Cotidianas , Niño , Femenino , Humanos , Masculino , Países Bajos , Reproducibilidad de los Resultados , Resultado del Tratamiento
14.
Res Dev Disabil ; 53-54: 314-22, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26970858

RESUMEN

OBJECTIVE: To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting. METHODS: A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews were conducted until informational redundancy was achieved. RESULTS: Three major themes were identified: Information, communication and partnership. A fourth, overarching theme emerged: The process of parent empowerment. Experiences and needs differed between parents and changed over time. CONCLUSION: This study suggests that various themes play a key role in the experiences and needs of parents of young children with CP. The identified themes provide important insights into how and why service providers might change their approach. PRACTICE IMPLICATIONS: Becoming empowered is a dynamic process for parents, in which both parents and service providers play a role. Service providers should continually adapt their role to parents' needs of information, communication and partnership, and they should support and facilitate parents in becoming empowered. For that, service providers should be educated on the process of parent empowerment, on ways to facilitate this process and on the importance of involving and interacting with parents. This allows families of young children with CP to be provided with services that best suit their needs.


Asunto(s)
Parálisis Cerebral/rehabilitación , Comunicación , Conducta Cooperativa , Necesidades y Demandas de Servicios de Salud , Terapia Ocupacional , Padres , Educación del Paciente como Asunto , Relaciones Profesional-Familia , Preescolar , Femenino , Humanos , Masculino , Evaluación de Necesidades , Participación del Paciente , Investigación Cualitativa
15.
Br J Dev Psychol ; 34(3): 427-46, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-26989988

RESUMEN

Participation in motor activities is essential for social interaction and life satisfaction in children. Self-perceptions and task values have a central position in why children do or do not participate in (motor) activities. Investigating developmental changes in motor self-perceptions and motor task values in elementary school children would provide vital information about their participation in motor activities. We therefore examined the change in, and associations between, self-perceptions and task values of fine motor competence, ball competence, and athletic competence in 292 children from kindergarten to grade 4. We also investigated differences between boys and girls, and between children with motor problems and typically developing children. Results indicated that self-perceptions and task values are domain specific and differ between boys and girls, but not between children with motor problems and typically developing children. Self-perceptions were not associated with task values. Educators should address specific self-perceptions to enhance participation into the corresponding motor activities in children between kindergarten and grade 4, and differences in self-perceptions and task values between boys and girls should be taken into account.


Asunto(s)
Conducta Infantil/fisiología , Actividad Motora/fisiología , Trastornos de la Destreza Motora/fisiopatología , Destreza Motora/fisiología , Autoimagen , Niño , Preescolar , Femenino , Humanos , Estudios Longitudinales , Masculino , Factores Sexuales
16.
Attach Hum Dev ; 18(3): 273-91, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26982876

RESUMEN

In contrast with traumatic experiences, there is a dearth of studies on the link between trauma symptoms, disconnected (frightened, threatening and dissociative) parenting behavior, extremely insensitive parenting behavior and child attachment. This study extends previous work on the impact of posttraumatic stress disorder (PTSD) on families by studying the unique contribution of disconnected and extremely insensitive parenting behavior on child attachment in a highly traumatized sample of 68 asylum seekers and refugees and their children (18-42 months). The results show that parental symptoms of PTSD are directly related to children's insecure attachment and disorganized attachment. The greatest proportion of the risk could be attributed to factors related to the dyad and not the family. A mediation effect of adverse parenting behavior was not confirmed. On the one hand the results indicate the need for an effective treatment of PTSD symptomatology while on the other hand the results indicate the need for clinical attention to insecure attachment relationships.


Asunto(s)
Apego a Objetos , Responsabilidad Parental , Padres/psicología , Refugiados/psicología , Trastornos por Estrés Postraumático , Adulto , Preescolar , Humanos , Lactante , Responsabilidad Parental/psicología , Trastornos por Estrés Postraumático/fisiopatología , Encuestas y Cuestionarios , Adulto Joven
17.
Dev Med Child Neurol ; 58(7): 758-766, 2016 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-26880083

RESUMEN

AIM: To examine the efficacy of child-focused, context-focused, and regular care approaches, delivered in a rehabilitation setting by physical or occupational therapists to preschool children with cerebral palsy (CP), in optimizing the child's self-care and mobility capabilities. METHOD: A multicentre randomized controlled trial clustered at therapist level was conducted in 13 rehabilitation centres. It included 68 children with CP (38 males, 30 females; mean age 3y, SD 6mo, range 1y 11mo-4y), classified as Gross Motor Function Classification System levels I to IV, who were already receiving therapy. Children received a child-focused, context-focused, or regular care approach during a 6-month period. Self-care and mobility capabilities were assessed with the Functional Skills Scale of the Pediatric Evaluation of Disability Inventory. RESULTS: The child-focused, context-focused, and regular care approaches all resulted in significant but similar improvements in self-care (regular: reference; child-focused: ß=-0.11, 95% confidence interval [CI] -0.68 to 0.46; context-focused: ß=0.13, CI -0.38 to 0.64) and mobility (regular: reference; child-focused: ß=-0.09, CI=-0.93 to 0.75; and context-focused: ß=0.14, CI -0.65 to 0.94) capabilities. INTERPRETATION: The results suggest that the three therapy approaches were equally efficacious for preschool children with CP. Depending on a child's individual situation each approach can be selected.

18.
Disabil Rehabil ; 38(8): 803-812, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26119575

RESUMEN

PURPOSE: The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. METHOD: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. RESULTS: Analysis revealed three super-ordinate themes: "Parents' experiences and concerns about systems, laws and regulations", "Parents' experiences and thoughts about physical and/or social environment" and "Parents' experiences and feelings of finding and/or enabling an activity". Parents' often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. CONCLUSIONS: In-depth exploration and understanding of parents' articulated matters must be shared and taken seriously by policymakers and service providers. Parents' knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability. Implications for Rehabilitation To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child's participation ought to be acknowledged. Active use of parents' experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation. Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

19.
Trauma Violence Abuse ; 17(2): 186-203, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25964276

RESUMEN

The question as to whether or not children can be affected by the traumatization of their parents has been the topic of a long-standing debate. This article provides a critical review of 72 research studies on traumatized parents with symptoms of posttraumatic stress disorder (PTSD), the parent-child interaction, and the impact on their nonexposed child (0-18 years). The evidence suggests that traumatization can cause parenting limitations, and these limitations can disrupt the development of the young child. From the studies reviewed several patterns emerged: Relational patterns of traumatized parents who are observed to be emotionally less available and who perceive their children more negatively than parents without symptoms of PTSD; relational patterns of children who at a young age are easily deregulated or distressed and at an older age are reported to face more difficulties in their psychosocial development than children of parents without symptoms of PTSD; and relational patterns that show remarkable similarities to relational patterns between depressed or anxious parents and their children. Mechanisms such as mentalization, attachment, physiological factors, and the cycle of abuse offer a valuable perspective to further our understanding of the relational patterns. This article builds on previous work by discussing the emerged patterns between traumatized parents and their nonexposed children from a relational and transactional perspective.


Asunto(s)
Relaciones Padres-Hijo , Responsabilidad Parental/psicología , Trastornos por Estrés Postraumático/psicología , Adultos Sobrevivientes del Maltrato a los Niños/psicología , Niño , Desarrollo Infantil , Preescolar , Femenino , Humanos , Masculino , Apego a Objetos
20.
Artículo en Inglés | MEDLINE | ID: mdl-25232647

RESUMEN

ABSTRACT The aim of this study was to examine which child and family characteristics at the child's age of 2 years are determinants of development of self-care and mobility activities over a period of 2 years in young children with cerebral palsy (CP). Longitudinal data of 92 children, representing all levels of the Gross Motor Function Classification System (GMFCS), were analyzed. Children's self-care and mobility activities were assessed with the Functional Skills Scale of the Pediatric Evaluation of Disability Inventory. Development of self-care and mobility activities was related to several child determinants but no family determinants. GMFCS, type of CP, intellectual capacity, and epilepsy were related to the development of self-care and mobility activities, while manual ability and spasticity were related to development of mobility activities. Multivariate analysis indicated that GMFCS and intellectual capacity were the strongest determinants of development of self-care activities, and GMFCS was the strongest determinant of development of mobility activities. The change in self-care and mobility activities was less favorable in severely affected children with severe disability. Knowledge of GMFCS level and intellectual capacity is important in anticipating change over time and goal setting in young children with CP.

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