Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 51
Filtrar
1.
Epilepsy Behav ; 154: 109726, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38513571

RESUMO

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 The behavioral profile in DS exists out of withdrawn behavior, aggressive behavior, and attention problems.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.


Assuntos
Canal de Sódio Disparado por Voltagem NAV1.1 , Humanos , Masculino , Feminino , Canal de Sódio Disparado por Voltagem NAV1.1/genética , Adulto , Criança , Adolescente , Adulto Jovem , Pré-Escolar , Epilepsias Mioclônicas/genética , Epilepsias Mioclônicas/psicologia , Epilepsias Mioclônicas/complicações , Qualidade de Vida , Síndromes Epilépticas/genética , Síndromes Epilépticas/psicologia , Transtornos do Neurodesenvolvimento/genética , Transtornos do Neurodesenvolvimento/psicologia , Transtornos do Neurodesenvolvimento/etiologia , Convulsões Febris/genética , Convulsões Febris/psicologia , Convulsões Febris/complicações , Comportamento Problema/psicologia , Epilepsia/genética , Epilepsia/psicologia , Epilepsia/complicações
2.
Pediatr Phys Ther ; 36(1): 95-103, 2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38227754

RESUMO

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.


Assuntos
Lactente Extremamente Prematuro , Nascimento Prematuro , Lactente , Feminino , Criança , Recém-Nascido , Humanos , Estudos de Coortes , Estudos Prospectivos , Pais , Recém-Nascido de muito Baixo Peso
3.
Epilepsy Behav ; 138: 108978, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36495797

RESUMO

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.


Assuntos
Epilepsias Mioclônicas , Epilepsia , Adulto Jovem , Criança , Humanos , Adolescente , Qualidade de Vida , Epilepsias Mioclônicas/diagnóstico , Epilepsia/diagnóstico , Convulsões/psicologia , Pais
4.
Nurs Crit Care ; 26(3): 201-208, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33124117

RESUMO

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.


Assuntos
Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Comunicação , Pessoal de Saúde , Humanos , Lactente , Recém-Nascido , Pais
5.
Pediatr Res ; 85(1): 43-49, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30254237

RESUMO

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.


Assuntos
Desenvolvimento Infantil , Hipocampo/diagnóstico por imagem , Hipóxia-Isquemia Encefálica/diagnóstico por imagem , Imageamento por Ressonância Magnética , Fatores Etários , Estudos de Casos e Controles , Criança , Comportamento Infantil , Cognição , Feminino , Hipocampo/crescimento & desenvolvimento , Humanos , Hipóxia-Isquemia Encefálica/complicações , Hipóxia-Isquemia Encefálica/fisiopatologia , Hipóxia-Isquemia Encefálica/psicologia , Testes de Inteligência , Masculino , Memória , Transtornos da Memória/diagnóstico , Transtornos da Memória/etiologia , Transtornos da Memória/psicologia , Valor Preditivo dos Testes , Fatores de Tempo
6.
Child Care Health Dev ; 45(5): 623-636, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31276605

RESUMO

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.


Assuntos
Crianças com Deficiência/reabilitação , Empoderamento , Intervenção Baseada em Internet , Pais/psicologia , Relações Profissional-Família , Adolescente , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Educação em Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Países Baixos , Satisfação do Paciente , Autoeficácia , Inquéritos e Questionários , Adulto Jovem
7.
BMC Pediatr ; 17(1): 12, 2017 01 11.
Artigo em Inglês | MEDLINE | ID: mdl-28077123

RESUMO

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.


Assuntos
Crianças com Deficiência/reabilitação , Relações Pais-Filho , Poder Familiar/psicologia , Pais/psicologia , Participação Social , Atividades Cotidianas , Criança , Pré-Escolar , Meio Ambiente , Feminino , Humanos , Masculino , Avaliação das Necessidades , Países Baixos , Pesquisa Qualitativa , Instituições Acadêmicas , Meio Social , Apoio Social
8.
Fam Process ; 56(3): 781-792, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-27245266

RESUMO

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.


Assuntos
Apego ao Objeto , Pais/psicologia , Refugiados/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Poder Familiar , Pesquisa Qualitativa , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Adulto Jovem
9.
Dev Med Child Neurol ; 58(7): 758-766, 2016 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26880083

RESUMO

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.

10.
Attach Hum Dev ; 18(3): 273-91, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26982876

RESUMO

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.


Assuntos
Apego ao Objeto , Poder Familiar , Pais/psicologia , Refugiados/psicologia , Transtornos de Estresse Pós-Traumáticos , Adulto , Pré-Escolar , Humanos , Lactente , Poder Familiar/psicologia , Transtornos de Estresse Pós-Traumáticos/fisiopatologia , Inquéritos e Questionários , Adulto Jovem
11.
Phys Occup Ther Pediatr ; 36(4): 363-75, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27593569

RESUMO

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.


Assuntos
Paralisia Cerebral/reabilitação , Terapeutas Ocupacionais , Terapia Ocupacional/métodos , Fisioterapeutas , Modalidades de Fisioterapia , Atividades Cotidianas , Criança , Feminino , Humanos , Masculino , Países Baixos , Reprodutibilidade dos Testes , Resultado do Tratamento
12.
Clin Rehabil ; 28(3): 211-20, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23988324

RESUMO

INTRODUCTION: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available. AIM: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions. DISCUSSION: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement. CONCLUSION: Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.


Assuntos
Crianças com Deficiência/psicologia , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Participação Social/psicologia , Criança , Crianças com Deficiência/reabilitação , Humanos
13.
Artigo em Inglês | MEDLINE | ID: mdl-25232647

RESUMO

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.

14.
Fam Process ; 52(4): 723-35, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24329413

RESUMO

Despite increased attention to the role of fathers within families, there is still a dearth of studies on the impact of trauma on father-involvement. This study investigates the quantity of father-involvement and the influence of posttraumatic stress on the quality of involvement in a refugee and asylum seeker population. Eighty refugees and asylum seekers and their young children (aged 18-42 months) were recruited. Measures included assessment of parental trauma (Harvard Trauma Questionnaire), quantity and quality of involvement (quantity of caregiving and Emotional Availability Scales), and perception of the father-child relationship (interview). The results show that fathers were less involved in caregiving tasks and play activities than mothers. No parental gender differences were found on each of the Emotional Availability Scales. Traumatic stress symptoms negatively affected the perception and the actual quality of parent-child interaction (sensitivity, structuring, nonhostility). Nevertheless, almost all fathers described their relationship with their child as good and their child as very important to them. As the quality of father-involvement is of importance to the development of the child, traumatized fathers are as much in need of clinical intervention as mothers. Despite the impact of posttraumatic stress, refugee fathers clearly are involved in the lives of their children. Mechanisms such as a deliberate withdrawal when stressed and compensation might enable affected fathers to step into the interaction when needed, raise the quality of involvement with their child, and diminish the negative impact of stress resulting from trauma and migration.


Assuntos
Cuidadores/psicologia , Relações Pai-Filho , Pai/psicologia , Refugiados/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adulto , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Relações Mãe-Filho/psicologia , Mães/psicologia , Países Baixos , Jogos e Brinquedos , Escalas de Graduação Psiquiátrica , Autocuidado/psicologia , Fatores Sexuais , Inquéritos e Questionários , Adulto Jovem
15.
Phys Occup Ther Pediatr ; 33(4): 372-83, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23477593

RESUMO

The aim of this study is to examine construct validity, internal consistency, and test-retest reliability of the Dutch translation of the Assessment of Preschool Children's Participation (APCP) a participation measure for children aged 2 to 5 years and 11 months with and without physical disabilities. Parents of 126 preschool children participated. Sixty-seven of the children had no physical disabilities (mean age three years two months, SD 1.2) and 59 children had physical disabilities (mean age two years nine months, SD 1.8). Validity was tested using three hypotheses regarding having a physical disability, gender and age differences. Most, but not all hypotheses were confirmed. Children with a physical disability participated in fewer activities and with lower intensity than children without physical disabilities (p < .001). Boys and girls participated in an equally wide variety of activities and with similar intensity except for skill development. Four- to five-year-old children in general participated in more activities than two- to three-year-old children and had a higher intensity score (p < .001). For activity types, age differences were found for skill development (p < .001) and social activities (p < .001). Internal consistency was sufficient for four out of 10 activity types. Intra Class Correlations for test-retest reliability ranged from 63 to .91. Our findings indicate that the Dutch APCP shows sufficient psychometric properties for some but not all aspects of the measure.


Assuntos
Doenças do Sistema Nervoso Central/psicologia , Doenças Musculoesqueléticas/psicologia , Inquéritos e Questionários , Fatores Etários , Estudos de Casos e Controles , Doenças do Sistema Nervoso Central/fisiopatologia , Pré-Escolar , Feminino , Humanos , Masculino , Atividade Motora , Destreza Motora/fisiologia , Doenças Musculoesqueléticas/fisiopatologia , Países Baixos , Jogos e Brinquedos , Psicometria , Reprodutibilidade dos Testes , Fatores Sexuais , Participação Social , Tradução
16.
Dev Med Child Neurol ; 54(6): 538-43, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22413769

RESUMO

AIM: To explore whether active head lifting from supine (AHLS) in early infancy is associated with cognitive outcome in the second year of life. METHOD: The presence of AHLS was always recorded in the notes of infants admitted to our tertiary neonatal intensive care unit. Random sampling was used to pair infants with AHLS with two comparison infants without AHLS whose sex, gestational age, birth year (1993-2009), time of assessment, and developmental test (Griffiths Mental Development Scales, Mental Scale of the Bayley Scales of Infant Development-II, or cognitive subtest of the Bayley Scales of Infant and Toddler Development-III) were comparable. Brain injury identified from neonatal cranial ultrasound scans was classified as no - mild or moderate - severe. Z-scores of cognitive test outcomes were calculated for multivariable analysis. RESULTS: Eighty-seven preterm (34 males, 53 females) and 40 term (17 males, 23 females) infants with AHLS were identified. AHLS was documented at a mean (corrected) age of 7.0 (SD 1.7) and 8.1 (SD 2.2) months respectively. The cognitive assessments were performed at a mean corrected age of 15.7 (SD 1.7) and 23.9 (SD 1.6) months in preterm infants, and 19.1 (SD 2.3) months in term infants. The mean cognitive outcome of preterm and term infants with AHLS was lower than that of infants without AHLS (p=0.002 and p=0.004 respectively). This remained after excluding infants with cerebral palsy with matching comparison infants (p=0.001 in preterm and p=0.001 in term infants). The mean difference was highest (1.35SD) between term male infants and comparison infants (p=0.001). INTERPRETATION: AHLS is associated with a less favourable cognitive outcome in the second year of life in preterm as well as in term-born infants than in comparison infants.


Assuntos
Desenvolvimento Infantil/fisiologia , Cognição/fisiologia , Movimentos da Cabeça/fisiologia , Nascimento Prematuro/fisiopatologia , Estudos de Casos e Controles , Paralisia Cerebral/diagnóstico , Feminino , Seguimentos , Idade Gestacional , Humanos , Lactente , Masculino , Análise Multivariada , Estudos Retrospectivos , Decúbito Dorsal
17.
BMC Pediatr ; 12: 177, 2012 Nov 08.
Artigo em Inglês | MEDLINE | ID: mdl-23137074

RESUMO

BACKGROUND: Pediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their child's participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their child's participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature. METHODS: Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings. RESULTS: Fourteen relevant articles revealed two major themes: 'parents enable and support performance of meaningful activities' and 'parents enable, change and use the environment'. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents. CONCLUSIONS: This study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their child's participation in daily life.


Assuntos
Paralisia Cerebral/reabilitação , Poder Familiar , Participação Social , Disrafismo Espinal/reabilitação , Criança , Humanos , Avaliação das Necessidades , Pais/psicologia , Apoio Social
18.
J Pediatr ; 159(1): 86-91.e1, 2011 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-21367430

RESUMO

OBJECTIVE: To examine incidence and severity of cerebral palsy (CP), and associated factors among preterm survivors (gestational age <34 weeks), admitted to a neonatal intensive care unit from 1990-2005. STUDY DESIGN: Eighteen antenatal, perinatal and postnatal factors were analyzed. The cohort was divided in four birth periods: 1990-1993 (n=661), 1994-1997 (n=726), 1998-2001 (n=723), and 2002-2005 (n=850). The Gross Motor Function Classification System was used as primary outcome measure (mean age: 32.9 ± 5.3 months). Logistic regression analyses were used. RESULTS: CP incidence decreased from 6.5% in period I, to 2.6%, 2.9% and 2.2% (P<.001) in period II-IV, respectively. Simultaneously, cystic periventricular leukomalacia (c-PVL) decreased from 3.3% in period I to 1.3% in period IV (P=.004). Within the total cohort (n=3287), c-PVL grade III decreased from 2.3% in period I to 0.2% in period IV (P=.003). The number of children with Gross Motor Function Classification System levels III-V decreased from period I to IV (P=.035). Independent risk factors for CP were c-PVL and severe intraventricular hemorrhage, whereas antenatal antibiotics, presence of an arterial line, Caesarean section, and gestational age were independent protective factors. CONCLUSION: CP incidence and severity decreased from 1990-1993 onward, which could be attributed to a reduction of 93% in severe c-PVL.


Assuntos
Paralisia Cerebral/epidemiologia , Recém-Nascido Prematuro , Índice de Gravidade de Doença , Antibacterianos/uso terapêutico , Peso ao Nascer , Cateteres de Demora , Hemorragia Cerebral/epidemiologia , Paralisia Cerebral/classificação , Cesárea , Idade Gestacional , Humanos , Incidência , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Leucomalácia Periventricular/epidemiologia , Países Baixos/epidemiologia , Cuidado Pré-Natal , Estudos Prospectivos , Fatores de Risco
19.
J Pediatr ; 157(2): 221-227.e2, 2010 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-20381069

RESUMO

OBJECTIVE: To assess the relation between patterns of brain injury on neonatal and childhood magnetic resonance imaging (MRI) and long-term neurodevelopmental outcome. STUDY DESIGN: Neonatal (n = 34) and childhood MRIs (n = 77) were analyzed for 80 children with neonatal encephalopathy and for 51 control subjects during childhood. MRIs were graded as normal, mildly abnormal (white matter lesions), or moderately/severely abnormal (watershed injury, lesions in basal ganglia/thalamus or focal infarction). Severity of brain injury was related to different aspects of neurologic outcome: Total impairment score of the Movement Assessment Battery for Children, intelligence quotient score, cerebral palsy, postneonatal epilepsy, and need for special education. Seven children with neonatal encephalopathy required extracorporeal membrane oxygenation treatment. RESULTS: Neonatal and childhood MRI were comparable in 25/33 children (75.8%, P < .001). Children with moderate/severe lesions on neonatal or childhood MRI more often had a total impairment score

Assuntos
Encefalopatias/diagnóstico , Lesões Encefálicas/diagnóstico , Imageamento por Ressonância Magnética/métodos , Asfixia Neonatal/fisiopatologia , Encefalopatias/fisiopatologia , Lesões Encefálicas/fisiopatologia , Estudos de Casos e Controles , Paralisia Cerebral/diagnóstico , Criança , Feminino , Humanos , Recém-Nascido , Testes de Inteligência , Masculino , Risco , Resultado do Tratamento
20.
Dev Med Child Neurol ; 52(8): e174-8, 2010 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-20132135

RESUMO

AIM: The aim of this study was to investigate the stability of motor problems in a clinically referred sample of children with, or at risk of, autism spectrum disorders (ASDs), attention-deficit-hyperactivity disorder (ADHD), and/or developmental coordination disorder (DCD). METHOD: Participants were 49 children (39 males, 10 females; mean age 5y 6 mo, SD 10 mo) with various developmental problems, a Movement Assessment Battery for Children (M-ABC) score on or below the 15th centile, and an IQ of 70 or more. Sixteen children were at risk of developing ADHD, 15 children had a diagnosis of, or were at risk of developing ASD, and 18 children had neither diagnosis. Children were reassessed 2 to 3 years later. RESULTS: At follow-up (mean age 7y 11 mo; SD 1y), the mean M-ABC score was significantly increased, and in 22 children was no longer below the 15th centile. A general linear model to compare the difference in M-ABC scores in the three groups of children demonstrated a significant difference between groups (p=0.013), with the age at the initial assessment as a significant covariate (p=0.052). The group of children with or at risk of ASD showed less improvement in motor performance. INTERPRETATION: Motor problems among preschool age children are not always stable, but appear to be so in most children with ASDs.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno Autístico/epidemiologia , Transtornos das Habilidades Motoras/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno Autístico/diagnóstico , Criança , Manual Diagnóstico e Estatístico de Transtornos Mentais , Feminino , Humanos , Masculino , Transtornos das Habilidades Motoras/diagnóstico , Índice de Gravidade de Doença , Inquéritos e Questionários
SELEÇÃO DE REFERÊNCIAS
Detalhe da pesquisa