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1.
Early Hum Dev ; 175: 105695, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36459886

RESUMO

BACKGROUND: Motor development is one of the first signals to identify whether an infant is developing well. For very preterm (VPT) infants without severe perinatal complications, little is known about their motor developmental curves. AIMS: Explore gross motor developmental curves from 3 until 18 months corrected age (CA) of VPT infants, and related factors. Explore whether separate profiles can be distinguished and compare these to profiles of Dutch term-born infants. STUDY DESIGN: Prospective cohort study with parents repeatedly recording their infant, using the Alberta Infant Motor Scale (AIMS) home-video method, from 3 to 18 months CA. SUBJECTS: Forty-two Dutch infants born ≤32.0 weeks gestational age and/or with a birthweight (BW) of <1500 g without severe perinatal complications. OUTCOME MEASURES: Gross motor development measured with the AIMS. RESULTS: In total 208 assessments were analyzed, with 27 infants ≥five assessments, 12 with

Assuntos
Doenças do Prematuro , Recém-Nascido Prematuro , Recém-Nascido , Humanos , Desenvolvimento Infantil , Estudos Prospectivos , Recém-Nascido de muito Baixo Peso , Peso ao Nascer
2.
BMC Pediatr ; 19(1): 392, 2019 10 29.
Artigo em Inglês | MEDLINE | ID: mdl-31664955

RESUMO

BACKGROUND: Current use of smartphone cameras by parents create opportunities for longitudinal home-video-assessments to monitor infant development. We developed and validated a home-video method for parents, enabling Pediatric Physical Therapists to assess infants' gross motor development with the Alberta Infant Motor Scale (AIMS). The objective of the present study was to investigate the feasibility of this home-video method from the parents' perspective. METHODS: Parents of 59 typically developing infants (0-19 months) were recruited, 45 parents participated in the study. Information about dropout was collected. A sequential mixed methods design was used to examine feasibility, including questionnaires and semi-structured interviews. While the questionnaires inquired after the practical feasibility of the home-video method, the interviews also allowed parents to comment on their feelings and thoughts using the home-video method. RESULTS: Of 45 participating parents, 34 parents returned both questionnaires and eight parents agreed to an interview. Parent reported effort by the infants was very low: the home-video method is perceived as similar to the normal routine of playing. The parental effort level was acceptable. The main constraint parents reported was time planning. Parents noted it was sometimes difficult to find the right moment to record the infant's motor behavior, that is, when parents were both at home and their baby was in the appropriate state. Technical problems with the web portal, reported by 28% of the parents were also experienced as a constraint. Positive factors mentioned by parents were: the belief that the home videos are valuable for family use, receiving feedback from a professional, the moments of one-on-one attention and interaction with their babies. Moreover, the process of recording the home videos resulted in an increased parental awareness of, and insight into, the gross motor development of their infant. CONCLUSION: The AIMS home-video method is feasible for parents of typically developing children. Most constraints are of a practical nature that can be addressed in future applications. Future research is needed to show whether the home-video method is also applicable for parents with an infant at risk of motor development problems.


Assuntos
Desenvolvimento Infantil/fisiologia , Pais , Gravação em Vídeo , Estudos de Viabilidade , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Atividade Motora , Pesquisa Qualitativa , Inquéritos e Questionários/estatística & dados numéricos
3.
Res Involv Engagem ; 3: 26, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29238612

RESUMO

PLAIN ENGLISH SUMMARY: Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to ask the right questions to physicians and other healthcare professionals. In order to develop a digital tool to help parents formulate questions and find information, we thought it would be crucial to work together in a process of co-creation with parents, researchers, IT-specialists and healthcare professionals. In close collaboration with them we developed a tool that aims to help parents ask questions, find information and take a more leading role in consultations with healthcare professionals, called the WWW-roadmap (WWW-wijzer in Dutch).In two groups of parents (one group with and one group without experience of using the tool), we will study the effects of using this tool, on consultations with physicians. We expect that using the tool will result in better empowerment, satisfaction and family-centred care. BACKGROUND: Parents of children with physical disabilities do much to support their child in daily life. In doing so, they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on various topics. Getting timely and reliable information is very difficult for parents, whereas being informed is a major requirement for the process of empowerment and shared decision-making. This paper describes the development of a digital tool to support parents in this process. During its development, working together with parents was crucial to address relevant topics and design a user-centred intervention. METHODS: In co-creation with parents, healthcare professionals, IT-professionals and researchers, a digital tool was developed, the 'WWW-roadmap' ['WWW-wijzer' in Dutch]. This digital tool aims to enable parents to explore their questions (What do I want to know?), help in their search for information (Where can I find the information I need), and refer to appropriate professionals (Who can assist me further?).During the process, we got extensive feedback from a parent panel consisting of parents of children with physical disabilities, enabling us to create the tool 'with' rather than 'for' them. This led to a user-friendly and problem-driven tool. DISCUSSION: The WWW-roadmap can function as a tool to help parents formulate their questions, search for information and thus prepare for consultations with healthcare professionals, and to facilitate parental empowerment and shared-decision making by parent and professional. Effects of using the WWW-roadmap on consultations with professionals will be studied in the future.

4.
Res Dev Disabil ; 60: 125-134, 2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-27914304

RESUMO

BACKGROUND: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. AIMS: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. METHODS: Qualitative semi-structured interviews were conducted with 15 parents of children with a disability, aged 1.5-21 years. Data were analysed using thematic analysis. RESULTS: There was much variation in information needs between parents. Parents used different sources, depending on the type of information needed, the most important being healthcare professionals, peers, and websites. Peers played an important role in information provision and were the preferred source of experience-based knowledge and support. The Internet is a widely used medium to search for information and to access various sources. There was a general preference for closed Internet communities for peer contact. Information was commonly evaluated by comparing sources. CONCLUSIONS AND IMPLICATIONS: Parents use different sources for different information needs, and evaluate information by comparing them. Healthcare professionals and parents can support each other in locating and evaluating information including experience-based knowledge. Healthcare professionals should guide parents in their search for information and experience-based knowledge from peers.


Assuntos
Crianças com Deficiência , Pessoal de Saúde , Comportamento de Busca de Informação , Internet , Pais , Grupo Associado , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
5.
Child Care Health Dev ; 41(1): 84-92, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24797584

RESUMO

BACKGROUND: The aim was to provide an overview of the number, domains and priority of needs as expressed by parents in supporting participation of their school-aged child with a physical disability. Additionally, this study investigated whether the number of needs within each domain is related to the child's gross motor function level, parent's perceived own general health, family socio-economic status and family type. METHOD: A cross-sectional study with a total of 146 participants (84.9% mothers) who completed a survey including the Family Needs Inventory - Paediatric Rehabilitation, the Gross Motor Function Classification System Family Report Questionnaire, the General Health Questionnaire and a demographic questionnaire. A need has been operationalized as 'a family's, parent's or other family member's expressed desire for information, services and supports related to their family'. Descriptive statistics and correlation analysis were applied. RESULTS: Parents (n = 146; response rate 27%) varied in the number of expressed needs (range 0-124; mean = 35.9; median = 30; SD = 25.6). Highest mean percentage scores were found for the domains 'Laws, regulations and fees' (36%), 'Leisure time' (35.6%) and 'Aids, adaptations, facilities and resources' (33.8%). Seven single needs were expressed by 50% or more of the parents. All domains of needs showed a positive correlation with perceived parental general health. The domains 'Laws, regulations and fees', 'Day care & school', 'Emotional and mental support' and 'Raising my child' correlated negatively with family socio-economic status; and child's gross motor function level correlated positively with the domains 'Aids, adaptations, facilities and resources', 'Practical support at home' and 'Leisure time'. CONCLUSIONS: As parents have a major influence on participation of children with a physical disability, meeting their individual needs should become an objective for service providers and policy makers. Family-centred service might be more effective by putting a greater emphasis on changing the environment.


Assuntos
Crianças com Deficiência/reabilitação , Transtornos das Habilidades Motoras/classificação , Pais/psicologia , Participação Social/psicologia , Apoio Social , Adulto , Criança , Pré-Escolar , Estudos Transversais , Características da Família , Feminino , Humanos , Masculino , Avaliação das Necessidades , Países Baixos , Índice de Gravidade de Doença , Classe Social , Inquéritos e Questionários
6.
Child Care Health Dev ; 40(4): 498-506, 2014 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24844366

RESUMO

BACKGROUND: Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS: Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS: The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION: Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.


Assuntos
Prestação Integrada de Cuidados de Saúde/estatística & dados numéricos , Crianças com Deficiência/reabilitação , Saúde da Família , Avaliação das Necessidades , Pais , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/estatística & dados numéricos , Equipamentos e Provisões , Feminino , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Avaliação das Necessidades/organização & administração , Avaliação das Necessidades/estatística & dados numéricos , Países Baixos/epidemiologia , Planejamento de Assistência ao Paciente , Guias de Prática Clínica como Assunto , Relações Profissional-Família , Apoio Social
7.
Clin Rehabil ; 28(4): 388-96, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24113728

RESUMO

OBJECTIVE: To assess the discrepancy between the leisure activities children prefer and the leisure activities they actually participate in, for children with and without a physical disability, and to explore how in both groups this is related to age and gender. DESIGN: Cross-sectional comparison. SUBJECTS: Children with and without physical disabilities that were recruited from schools for special education and regular schools in the Netherlands. MAIN MEASURES: The Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC). A discrepancy score was calculated representing high preference but no participation in the activity in the past four months. RESULTS: A total of 141 children (6-18 years) with a physical disability (mean age 12.5, 43% girls, 57% boys) and 156 children without physical disabilities (mean age 11.5, 55% girls,45% boys) were included in the study. There was no significant difference in discrepancy scores between children with and without physical disabilities (informal activities 9.8 ± 5.0 vs. 9.8 ± 4.6, formal activities 6.4 ± 3.4 vs. 6.6 ± 2.8). Discrepancy between preference and performance varied by age and gender for children without disabilities but not for children with disabilities. CONCLUSIONS: Both groups are equally able to participate in the activities they prefer. Age and gender had a significant effect on the discrepancy scores for children and adolescents without physical disabilities but not for children with physical disabilities.


Assuntos
Comportamento do Adolescente/psicologia , Comportamento Infantil/psicologia , Comportamento de Escolha , Crianças com Deficiência/psicologia , Atividades de Lazer/psicologia , Participação Social/psicologia , Adolescente , Distribuição por Idade , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Países Baixos , Análise de Regressão , Distribuição por Sexo
8.
Child Care Health Dev ; 40(6): 787-96, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23937711

RESUMO

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.


Assuntos
Adaptação Psicológica , Paralisia Cerebral/reabilitação , Terapia Ocupacional , Pais , Especialidade de Fisioterapia , Paralisia Cerebral/psicologia , Pré-Escolar , Crianças com Deficiência , Humanos , Lactente , Recém-Nascido , Relações Pais-Filho , Pais/psicologia , Satisfação do Paciente , Assistência Centrada no Paciente , Apoio Social
9.
Child Care Health Dev ; 39(3): 374-80, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-22676329

RESUMO

OBJECTIVE: This longitudinal study aims to determine which child, family and environmental variables measured at 2 years of age predict leisure participation in formal and informal activities in school aged children with cerebral palsy (CP). METHODS: Parents of 46 children with CP (mean age at baseline: 2 years 6 months, SD 0 years 1 month; at follow-up 6 years 7 months, SD 0 years 9 months; n = 26 boys, n = 20 girls; Gross Motor Classification System I = 30%, II = 7%, III = 28%, IV = 24%, V = 11%) completed the Children's Assessment of Participation and Enjoyment indicating their child's participation. Multivariate regression models were used to identify early predictors of participation. RESULTS: Movement ability was a significant child-related predictor for formal activities (R(2) 17%, P < 0.05). Movement ability and social skills were most predictive (R(2) 62%, P < 0.00) for informal activities. The feeling of being restricted in family participation was the single most predictive factor for formal and informal activities at family level (R(2) 12%, P < 0.05, R(2) 25%, P < 0.05). Type of daycare was the only environmental variable that was predictive, and only for informal activities (R(2) 16%, P < 0.05). In the overall model movement ability was most predictive for leisure participation in formal activities (R(2) 17%, P < 0.05). Movement ability and social skills are the most important predictors for informal leisure participation (R(2) 62%, P < 0.01). CONCLUSIONS: Several variables are found to be related to formal and informal participation at age 6. Movement ability and social skills at age 2 are most predictive of leisure participation when the child is 6 years old.


Assuntos
Paralisia Cerebral/reabilitação , Crianças com Deficiência/reabilitação , Meio Ambiente , Atividades de Lazer , Participação Social , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Criança , Pré-Escolar , Avaliação da Deficiência , Crianças com Deficiência/psicologia , Saúde da Família , Feminino , Humanos , Relações Interpessoais , Estudos Longitudinais , Masculino , Destreza Motora , Psicometria , Apoio Social , Inquéritos e Questionários
10.
Res Dev Disabil ; 32(5): 1521-9, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21388783

RESUMO

In 2001 the International Classification of Functioning (ICF) defined participation as 'someone's involvement in life situations'. Participation in leisure activities contributes to the development of children and their quality of life. Children with physical disabilities are known to be at risk for participation in fewer activities. The group of children with physical disabilities is highly heterogeneous consisting of children with different diagnosis and different ages. This systematic review aims to analyse the literature for the purpose of looking for variables involved in the frequency of participation in leisure activities for children and youth with different diagnoses and ages. Frequency of participation in leisure activities for children and youth with physical disabilities is associated with a variety of variables. Gross motor function, manual ability, cognitive ability, communicative skills, age and gender are the most important variables. The current evidence suggests that similar variables seem to apply to children with different diagnoses. Age is an important variable in participation of children and youth. However evidence about those variables associated with children at different ages is still lacking.


Assuntos
Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Crianças com Deficiência/psicologia , Atividades de Lazer/psicologia , Psicologia do Adolescente , Psicologia da Criança , Adolescente , Criança , Humanos
11.
J Intellect Disabil Res ; 55(6): 550-62, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21435067

RESUMO

BACKGROUND: Children with cerebral palsy (CP) are at greater risk for a limited intellectual development than typically developing children. Little information is available which children with CP are most at risk. This study aimed to describe the development of non-verbal intellectual capacity of school-age children with CP and to examine the association between the development of non-verbal intellectual capacity and the severity of CP. METHODS: A longitudinal analysis in a cohort study was performed with a clinic-based sample of children with CP. Forty-two children were assessed at 5, 6 and 7 years of age, and 49 children were assessed at 7, 8 and 9 years of age. Non-verbal intellectual capacity was assessed by Raven's Coloured Progressive Matrices (RCPM). Severity of CP was classified by the Gross Motor Function Classification System, type of motor impairment and limb distribution. manova for repeated measurements was used to analyse time effects and time × group effects on both RCPM raw scores and RCPM intelligence quotient scores. RESULTS: The development of non-verbal intellectual capacity was characterised by a statistically significant increase in RCPM raw scores but no significant change in RCPM intelligence quotient scores. The development of RCPM raw scores was significantly associated with the severity of CP. Children with higher levels of gross motor functioning and children with spastic CP showed greater increase in raw scores than children with lower levels of gross motor functioning and children with dyskinetic CP. CONCLUSIONS: Children with CP aged between 5 and 9 years show different developmental trajectories for non-verbal intellectual capacity, which are associated with the severity of CP. The development of non-verbal intellectual capacity in children with less severe CP seems to resemble that of typically developing children, while children with more severe CP show a limited intellectual development compared to typically developing children.


Assuntos
Paralisia Cerebral/diagnóstico , Paralisia Cerebral/psicologia , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/psicologia , Testes de Inteligência/estatística & dados numéricos , Resolução de Problemas , Paralisia Cerebral/reabilitação , Criança , Pré-Escolar , Estudos de Coortes , Avaliação da Deficiência , Feminino , Humanos , Deficiência Intelectual/reabilitação , Estudos Longitudinais , Masculino
12.
Disabil Rehabil ; 33(15-16): 1421-32, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21091046

RESUMO

PURPOSE: This study provides information on the psychometric properties of a newly developed Dutch-language instrument for measuring parental perceptions of participation of preschool children (aged 2+ to 5+ years): the PART. METHOD: The PART was administered to parents of preschool children with (n = 51) and without (n = 285) physical developmental disabilities. In the group with disabilities, children with no or relatively minor mobility limitations (capability scores in mobility domain higher than one standard deviation below population mean) were excluded from all analyses. A subgroup of parents of children without disabilities (n = 56) filled out the PART a second time, after a five-week interval. Hypotheses regarding group differences in PART scores and correlations of PART scores with different, but related ICF-constructs were tested. Test-retest reliability of the PART scales was examined. RESULTS: Expectations about group differences were confirmed. PART scores were associated in predicted ways with related constructs. PART scales showed good test-retest reliability (ICCs from 0.76 to 0.87). CONCLUSIONS: These findings indicate that the Dutch-language PART is a reliable and valid instrument for measuring parental perceptions of participation of preschool children with and without mobility limitations. The PART can prove useful for both clinical and research purposes.


Assuntos
Atividades Cotidianas , Avaliação da Deficiência , Crianças com Deficiência/reabilitação , Limitação da Mobilidade , Pais/psicologia , Estudos de Casos e Controles , Pré-Escolar , Humanos , Masculino , Países Baixos , Consentimento dos Pais , Participação do Paciente/estatística & dados numéricos , Percepção , Psicometria , Valores de Referência , Reprodutibilidade dos Testes , Medição de Risco
13.
J Intellect Disabil Res ; 54(5): 433-47, 2010 May.
Artigo em Inglês | MEDLINE | ID: mdl-20537049

RESUMO

BACKGROUND: The goal of this study is to evaluate the effectiveness of a computerised working memory (WM) training on memory, response inhibition, fluid intelligence, scholastic abilities and the recall of stories in adolescents with mild to borderline intellectual disabilities attending special education. METHOD: A total of 95 adolescents with mild to borderline intellectual disabilities were randomly assigned to either a training adaptive to each child's progress in WM, a non-adaptive WM training, or to a control group. RESULTS: Verbal short-term memory (STM) improved significantly from pre- to post-testing in the group who received the adaptive training compared with the control group. The beneficial effect on verbal STM was maintained at follow-up and other effects became clear at that time as well. Both the adaptive and non-adaptive WM training led to higher scores at follow-up than at post-intervention on visual STM, arithmetic and story recall compared with the control condition. In addition, the non-adaptive training group showed a significant increase in visuo-spatial WM capacity. CONCLUSION: The current study provides the first demonstration that WM can be effectively trained in adolescents with mild to borderline intellectual disabilities.


Assuntos
Instrução por Computador , Educação Inclusiva , Deficiência Intelectual/psicologia , Deficiência Intelectual/terapia , Inteligência , Memória de Curto Prazo , Adolescente , Aptidão , Percepção de Cores , Aprendizagem por Discriminação , Função Executiva , Feminino , Humanos , Masculino , Países Baixos , Orientação , Reconhecimento Visual de Modelos , Prática Psicológica , Desempenho Psicomotor , Tempo de Reação , Aprendizagem Seriada , Resultado do Tratamento , Aprendizagem Verbal
14.
Clin Rehabil ; 24(9): 843-53, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-20483886

RESUMO

OBJECTIVE: To assess construct validity, test-retest reliability and inter-interviewer reliability of the intensity dimension of the Children's Assessment of Participation and Enjoyment (CAPE) for children with and without physical disabilities in the Netherlands. SUBJECTS: In total, 232 children aged 6-18 years (110 male, 122 female) participated. Seventy-four children with various physical disabilities and 158 without a disability. DESIGN: Participants completed the CAPE and the Peabody Picture Vocabulary Test. In addition, parents of 142 children were interviewed using the Vineland Adaptive Behavior Scales and the Family Environment Scale. For 71 children test- retest reliability and for 60 children inter-interviewer reliability were assessed. Validity was examined by assessing differences in participation intensity in children with disabilities versus without a physical disability, boys versus girls, and younger versus older children. In addition, 13 hypotheses regarding participation, child and family variables were examined. RESULTS: Validity of the CAPE was supported by significant differences in participation for subgroups. Participation differed significantly in children with and without disabilities. Girls participated more in all activities. Older children participated more in social activities and self-improvement activities, younger children participated more in recreational activities. Validity of the CAPE was further supported with significant correlation coefficients in 8 out of 13 hypotheses. Both test-retest and inter-interviewer reliability were good to excellent. CONCLUSIONS: The findings indicate that the Dutch language version of the CAPE is a reliable and valid instrument to measure participation in recreation and leisure activities for children with and without physical disabilities aged 6-18 years.


Assuntos
Competência Cultural , Determinação da Personalidade , Ajustamento Social , Adolescente , Fatores Etários , Criança , Crianças com Deficiência , Feminino , Humanos , Masculino , Países Baixos , Variações Dependentes do Observador , Psicometria , Recreação , Reprodutibilidade dos Testes , Autorrelato , Fatores Sexuais , Conformidade Social
15.
Child Care Health Dev ; 36(5): 703-8, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-20412145

RESUMO

OBJECTIVE: This study aimed to describe changes in parents' resolution regarding their young child's diagnosis of cerebral palsy over a period of 1 year, and to describe the changes in strategies of resolution. METHODS: In this longitudinal study, 38 parents of children with cerebral palsy (mean age 18.4 months, SD = 1.1 at baseline) were followed with the Reaction to Diagnosis Interview, assessing their personal reactions to their child's diagnosis (i.e. resolution status). Changes at main and subclassification level of the Reaction to Diagnosis Interview were investigated using a binominal test. RESULTS: Twenty-nine parents (76%) were found to be stable with respect to their main resolution status (i.e. 'resolved' or 'unresolved'), while 24% of the parents either had changed from 'unresolved' to 'resolved' or in the opposite way. Furthermore, of the 28 parents who were classified as 'resolved' at both times, 15 (54%) had changed at subclassification level with respect to the specific strategies used. CONCLUSION: Resolution at a main level of parental reactions to their child's diagnosis was predominantly stable. Most parents were classified as 'resolved' at both baseline and follow-up assessment. However, more detailed analyses at subclassification level showed that most parents with a 'resolved' main status showed changing patterns of resolution strategies to their child's diagnosis, suggesting that resolution is an ongoing process.


Assuntos
Adaptação Psicológica , Paralisia Cerebral/psicologia , Pais/psicologia , Estresse Psicológico/psicologia , Adulto , Paralisia Cerebral/diagnóstico , Avaliação da Deficiência , Feminino , Humanos , Lactente , Estudos Longitudinais , Masculino , Estresse Psicológico/diagnóstico , Estresse Psicológico/etiologia , Fatores de Tempo
16.
Disabil Rehabil ; 31(22): 1828-34, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19479504

RESUMO

BACKGROUND: Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'. PURPOSE: To investigate the perception of family participation among parents of preschool children with CP. METHOD: Semi-structured interviews were used to describe how parents (n=53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n=36) perceived family participation over time (followed from 18 months onwards until 42 months of age). RESULTS: At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test). CONCLUSIONS: A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older.


Assuntos
Paralisia Cerebral , Saúde da Família , Atividades de Lazer , Paralisia Cerebral/reabilitação , Pré-Escolar , Feminino , Humanos , Lactente , Entrevistas como Assunto , Masculino , Pais
17.
Dev Med Child Neurol ; 50(9): 684-9, 2008 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18754918

RESUMO

To describe the impact of periventricular leukomalacia (PVL) on gross motor function, data on 59 children (37 males, 22 females) with a gestational age (GA) of 34 weeks or less with cerebral palsy (CP) due to PVL grade I (n=20), II (n=13), III (n=25), and IV (n=1) were studied; (mean GA 29 wk 4d [SD 4 wk 6d]; mean birthweight 1318 g [SD 342]). Two independent raters used the Gross Motor Function Classification System (GMFCS) at four time points: T1, mean corrected age (CA) 9 months 15 days (SD 2 mo 6d); T2, mean CA 16 months (SD 1 mo 27 d); T3, mean CA 24 months 27 days (SD 2 mo 3d); and T4, median age 7 years 6 months (range 2 y 2 mo-16 y 8 mo). Interrater reliability and stability across time with respect to the total cohort were kappa>or=0.86 and rho>or=0.74 respectively. The association between PVL and gross motor outcome at T4 was strong (positive and negative predictive values 0.92 and 0.85 respectively). The proportion of children who remained in the same GMFCS level increased from 27% (T1-T4) to 53% (T2-T4) and 72% (T3-T4). PVL grade I to II, as diagnosed in the neonatal period, has a better functional mobility prognosis than PVL grade III-IV. These findings have implications for habilitation counselling and intervention strategies.


Assuntos
Paralisia Cerebral/etiologia , Desenvolvimento Infantil , Recém-Nascido de Baixo Peso , Leucomalácia Periventricular/complicações , Atividade Motora/fisiologia , Desempenho Psicomotor/fisiologia , Adolescente , Criança , Pré-Escolar , Avaliação da Deficiência , Crianças com Deficiência , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Índice de Gravidade de Doença , Estatística como Assunto
18.
Child Care Health Dev ; 33(2): 161-9, 2007 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-17291320

RESUMO

BACKGROUND: Little is known about the way parents adapt to the situation when their child is diagnosed with cerebral palsy. METHODS: A literature search was performed to gain a deeper insight in the process of adaptation of parents with a child with cerebral palsy and on factors related to this process. The selected articles were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii) variables and instruments and (iv) results on adaptation and stress of the parents. RESULTS: Twenty-two studies were found, which showed a large variety in research designs, instruments and populations. Despite methodological differences, it was possible to extract a number of factors related to resources of individual family members, the family unit as a whole and in the community, family appraisal and adaptive coping. CONCLUSION: It is important to realize that parents' adaptation may change as a function of their child's development and changing stages of family life over time. Until now cross-sectional studies have dominated this area of research, but in order to understand the process of adaptation over time, longitudinal studies are needed.


Assuntos
Adaptação Psicológica , Paralisia Cerebral , Família/psicologia , Pais/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Apoio Social , Estresse Psicológico
19.
J Intellect Disabil Res ; 51(Pt 2): 162-9, 2007 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-17217480

RESUMO

BACKGROUND: Previous research into working memory of individuals with intellectual disabilities (ID) has established clear deficits. The current study examined working memory in children with mild ID (IQ 55-85) within the framework of the Baddeley model, fractionating working memory into a central executive and two slave systems, the phonological loop and visuo-spatial sketchpad. METHOD: Working memory was investigated in three groups: 50 children with mild ID (mean age 15 years 3 months), 25 chronological age-matched control children (mean age 15 years 3 months) and 25 mental age-matched control children (mean age 10 years 10 months). The groups were given multiple assessments of the phonological-loop and central-executive components. RESULTS: The results showed that the children with mild ID had an intact automatic rehearsal, but performed poorly on phonological-loop capacity and central-executive tests when compared with children matched for chronological age, while there were only minimal differences relative to the performance of the children matched for mental age. CONCLUSIONS: This overall pattern of results is consistent with a developmental delay account of mild ID. The finding of a phonological-loop capacity deficit has important implications for the remedial training of children with mild ID.


Assuntos
Deficiência Intelectual/epidemiologia , Transtornos da Memória/epidemiologia , Comportamento Verbal , Adolescente , Feminino , Humanos , Masculino , Transtornos da Memória/diagnóstico , Fonética , Escalas de Wechsler
20.
J Pediatr ; 149(5): 617-22, 2006 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-17095330

RESUMO

OBJECTIVE: To systematically examine gross motor development in the first 18 months of life of preterm infants. STUDY DESIGN: A total of 800 preterm infants (356 boys), ages between 1 and 18 months and corrected for degree of prematurity, were assessed with the use of the Alberta Infant Motor Scale. RESULTS: Comparison of the mean Alberta Infant Motor Scale scores of the preterm infants with the norm-referenced values derived from term infants revealed that as a group, the preterm infants scored significantly lower at all age levels, even with full correction for degree of prematurity. CONCLUSIONS: In general, preterm infants exhibit different gross motor developmental trajectories compared with term infants in the first 18 months of life. The gross motor developmental profile of preterm infants may reflect a variant of typical gross motor development, which seems most likely to be specific for this population. As a consequence, adjusted norms should be used for proper evaluation and clinical decision-making in relation to preterm infants.


Assuntos
Desenvolvimento Infantil/fisiologia , Recém-Nascido Prematuro/fisiologia , Destreza Motora/fisiologia , Análise de Variância , Estudos Transversais , Feminino , Seguimentos , Idade Gestacional , Humanos , Comportamento do Lactente/fisiologia , Recém-Nascido , Masculino , Movimento/fisiologia , Exame Físico , Postura/fisiologia , Estudos Prospectivos , Sensibilidade e Especificidade , Fatores de Tempo , Suporte de Carga/fisiologia
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