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1.
Qual Life Res ; 26(5): 1105-1117, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-27830512

RESUMO

PURPOSE: Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting. METHODS: The Kids-CAT study is a longitudinal prospective study with eight measurements over one year at two University Medical Centers in Germany. For validating the Kids-CAT, 270 consecutive 7- to 17-year-old patients with asthma (n = 52), diabetes (n = 182) or juvenile arthritis (n = 36) answered well-established HRQoL instruments (Pediatric Quality of Life Inventory™ (PedsQL), KIDSCREEN-27) and scales measuring related constructs (e.g., social support, self-efficacy). Measurement precision, test-retest reliability, convergent and discriminant validity were investigated. RESULTS: The mean standard error of measurement ranged between .38 and .49 for the five dimensions, which equals a reliability between .86 and .76, respectively. The Kids-CAT measured most reliably in the lower HRQoL range. Convergent validity was supported by moderate to high correlations of the Kids-CAT dimensions with corresponding PedsQL dimensions ranging between .52 and .72. A lower correlation was found between the social dimensions of both instruments. Discriminant validity was confirmed by lower correlations with non-corresponding subscales of the PedsQL. CONCLUSIONS: The Kids-CAT measures pediatric HRQoL reliably, particularly in lower areas of HRQoL. Its test-retest reliability should be re-investigated in future studies. The validity of the instrument was demonstrated. Overall, results suggest that the Kids-CAT is a promising candidate for detecting psychosocial needs in chronically ill children.


Assuntos
Computadores/estatística & dados numéricos , Psicometria/métodos , Perfil de Impacto da Doença , Adolescente , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Estudos Prospectivos , Projetos de Pesquisa , Inquéritos e Questionários
2.
Gesundheitswesen ; 79(6): 491-496, 2017 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-26270040

RESUMO

Background: The importance of health-related care and self-management responsibilities has been shown in recent research. The aim of this work is the development and psychometric testing of an instrument to assess health-related transition competence. Methods: The instrument was developed with psychometric and conceptual methods in several steps. Based on focus group and expert interviews, an item pool to assess health-related transition competence was developed. The instrument was tested and finalised in a pilot study with adolescents with chronic conditions (N=323). Results: Three subscales "work-related preparedness" (3 items), "condition-related knowledge" (3 items) and "health-care competence" (4 items) with proper psychometric properties were identified. The subscales can be combined to a global score. Conclusions: The scales feature good psychometrics. They efficiently facilitate the standardised assessment of health-related transition competence in preparation and progress of the transition. This also enables for outcome assessment of health-care services related to transition competence (e. g., workshops).


Assuntos
Doença Crônica/psicologia , Doença Crônica/terapia , Autocuidado/psicologia , Autorrelato , Inquéritos e Questionários , Transição para Assistência do Adulto , Adaptação Psicológica , Adolescente , Adulto , Avaliação da Deficiência , Feminino , Alemanha , Letramento em Saúde , Humanos , Masculino , Psicometria , Adulto Jovem
3.
Gesundheitswesen ; 79(3): 164-173, 2017 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-27056714

RESUMO

Aim of the study: The use of physical therapy in German children and adolescents has so far solely been analyzed on the basis of health insurance data, which can neither consider case history nor social factors. Using the KiGGS-baseline survey it is possible to examine the use of physical therapy on the basis of parental reported health problems and social factors. Methodology: Identifiable determinants for the use of physical therapy in the last 12 months in the KiGGS-baseline survey were examined bivariate and multivariate in logistic regression models with mutual adjustment. The following determinants were considered: social factors, somatic disorders and psychological abnormalities. The proportion of the use of physical therapy, which can be explained by these determinants, was estimated using population-attributable risk fraction. Results: The frequency of the use of physical therapy in the last 12 months in the 0 to 17-year-olds in the KiGGS-baseline survey was 6,4% with higher use during infancy and adolescence. The socio-economic status of parents was not associated with the use of physical therapy. A migration background decreased the probability of the use of physical therapy, for example, among children aged 0 to 2 years (ORadjusted: 0,5 [95% CI: 0,2-1,0]). In those with scoliosis, the use of physical therapy was almost twice as frequent in infancy as in adolescence (58,4 vs. 34,4%). A maximum of 15% of all children and adolescents with back pain reported the use of physical therapy. When ADHD was diagnosed at preschool age, the probability of using physical therapy was increased (ORadjusted: 5,1 [95% CI: 1,4-18,6]). The health problems, which were assessed in the KiGGS-baseline survey and considered for this analysis could explain 37% of the use of physical therapy in the 0 to 2-year-olds. In the other age groups, 59 to 62% could be explained. Conclusion: Comparison of the KiGGS-baseline survey with health insurance data shows similar frequencies and patterns of the use of physical therapy and can therefore be used for the analysis of healthcare questions on the use of physical therapy. The data point to potential deficits in treatment in population segments and for some conditions. An examination of these hypotheses based on analyses of health insurance data seems to be reasonable.


Assuntos
Pessoas com Deficiência/reabilitação , Custos de Cuidados de Saúde/estatística & dados numéricos , Programas Nacionais de Saúde/economia , Programas Nacionais de Saúde/estatística & dados numéricos , Modalidades de Fisioterapia/estatística & dados numéricos , Revisão da Utilização de Recursos de Saúde , Adolescente , Saúde do Adolescente/estatística & dados numéricos , Distribuição por Idade , Criança , Saúde da Criança/estatística & dados numéricos , Pré-Escolar , Feminino , Alemanha/epidemiologia , Pesquisas sobre Atenção à Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Prescrições/estatística & dados numéricos , Distribuição por Sexo , Adulto Jovem
4.
Rehabilitation (Stuttg) ; 56(2): 109-118, 2017 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-28395374

RESUMO

Background Medical rehabilitation is recognized as an effective health care service to promote and protect health and social participation of children and adolescents. Although the number of children and adolescents with chronic conditions is growing, applications for rehabilitation have declined substantially since 2008. The aim of the study is to identify barriers that prevent families from claiming benefits for rehabilitation services and to give recommendations for actions. Methods In this explorative study, guided qualitative interviews with families with children and adolescents eligible for benefits were conducted. The analysis of the transcribed interviews followed the iterative process of content analysis (deductive and inductive development of main and sub-categories). Results 14 families (with 16 index-children) participated in the study. The results showed high levels of psychosocial burden of families and yet barriers to access services on a structural, disease-specific, and individual level. We identified three main topics in which families recommended modifications: (a) information policy, (b) family centeredness perspectives and flexibility, and (c) cross-sectoral collaboration/health care management. Conclusions Results indicate that families perceive the current pediatric rehabilitation services to lack fitting and flexibility. In general, a new approach of information and counselling, a more family centered perspective and integration of rehabilitation services in a comprehensive and coordinated health care structure are needed.


Assuntos
Serviços de Saúde do Adolescente/estatística & dados numéricos , Serviços de Saúde da Criança/estatística & dados numéricos , Família , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Benefícios do Seguro/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Reabilitação/estatística & dados numéricos , Adolescente , Serviços de Saúde do Adolescente/economia , Criança , Serviços de Saúde da Criança/economia , Pré-Escolar , Efeitos Psicossociais da Doença , Feminino , Alemanha , Acessibilidade aos Serviços de Saúde/economia , Humanos , Lactente , Recém-Nascido , Benefícios do Seguro/economia , Masculino , Reabilitação/economia
5.
Qual Life Res ; 25(3): 585-94, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26790429

RESUMO

PURPOSE: To describe the implementation process of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) of children and adolescents in two pediatric clinics in Germany. The study focuses on the feasibility and user experience with the Kids-CAT, particularly the patients' experience with the tool and the pediatricians' experience with the Kids-CAT Report. METHODS: The Kids-CAT was completed by 312 children and adolescents with asthma, diabetes or rheumatoid arthritis. The test was applied during four clinical visits over a 1-year period. A feedback report with the test results was made available to the pediatricians. To assess both feasibility and acceptability, a multimethod research design was used. To assess the patients' experience with the tool, the children and adolescents completed a questionnaire. To assess the clinicians' experience, two focus groups were conducted with eight pediatricians. RESULTS: The children and adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was straightforward and easy to understand and integrate into clinical practice; they also expressed that routine implementation of the tool would be desirable and that the report was a valuable source of information, facilitating the assessment of self-reported HRQoL of their patients. CONCLUSIONS: The Kids-CAT was considered an efficient and valuable tool for assessing HRQoL in children and adolescents. The Kids-CAT Report promises to be a useful adjunct to standard clinical care with the potential to improve patient-physician communication, enabling pediatricians to evaluate and monitor their young patients' self-reported HRQoL.


Assuntos
Indicadores Básicos de Saúde , Aplicações da Informática Médica , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Autorrelato , Adolescente , Atitude do Pessoal de Saúde , Criança , Computadores , Estudos de Viabilidade , Feminino , Grupos Focais , Alemanha , Humanos , Masculino , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Relações Médico-Paciente , Estudos Prospectivos , Inquéritos e Questionários
6.
Klin Padiatr ; 228(2): 77-83, 2016 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-26886146

RESUMO

BACKGROUND: A population-based analysis on use of occupational therapy by child's parentally reported health restrictions and socio-demographic determinants is missing. PATIENTS AND METHODS: The basis KiGGS survey (2003 to 2006) reports on health in 17 641 children aged 0 to 17 years. The use of occupational therapy in the last 12 months could be ticked as other therapies with a free text field to name occupational therapy or others. Health restrictions potentially relevant for the use of occupational therapy and sociodemographic factors were assessed. The proportion of use of occupational therapy explained by the health restrictions was estimated by the population attributable risk fraction. RESULTS: The average use of occupational therapy for 3 to 13-year-olds was 2.4%. There was no association with the socioeconomic status; Children with immigration background used occupational therapy less often (e. g. age group 3 to 6 years: ORadjusted 0.2 [95-% KI: 0.1-1.0]). The proportion of occupational therapy explainable by the health restrictions considered ranged from 45% (3 to 6 years) to 65% (11 to 13 years). DISCUSSION: The lower use of occupational therapy in the KiGGS survey compared to health insurance reports may be explained by the ascertainment method. A lower use of occupational therapy related to immigration background matches lower use for physician visits. CONCLUSION: The causes for the low proportion of explained occupational therapy in young children and the lower use in children with immigration background warrant further research.


Assuntos
Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Terapia Ocupacional/estatística & dados numéricos , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/reabilitação , Criança , Pré-Escolar , Estudos Transversais , Deficiências do Desenvolvimento/epidemiologia , Deficiências do Desenvolvimento/reabilitação , Avaliação da Deficiência , Emigrantes e Imigrantes/estatística & dados numéricos , Feminino , Alemanha , Humanos , Lactente , Recém-Nascido , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/reabilitação , Masculino , Transtornos Mentais/epidemiologia , Transtornos Mentais/reabilitação , Transtornos Psicomotores/epidemiologia , Transtornos Psicomotores/reabilitação , Fatores Socioeconômicos , Revisão da Utilização de Recursos de Saúde/estatística & dados numéricos
7.
Gesundheitswesen ; 77 Suppl 1: S76-7, 2015 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-24081558

RESUMO

Based on a randomized controlled multicentre-design the effect of school-based life skills programmes was investigated in a sample of 102 classes of secondary schools (Hauptschulen) in northern Germany. Self-reports of 1,057 pupils showed positive effects of the programmes on the reduction of smoking. Pupils' life skills improved in the teachers' assessment. The social and the migration status did not moderate the results. Both pupils and teachers evaluated the programmes very positive.


Assuntos
Comportamento de Redução do Risco , Serviços de Saúde Escolar/estatística & dados numéricos , Instituições Acadêmicas/estatística & dados numéricos , Prevenção do Hábito de Fumar , Fumar/epidemiologia , Populações Vulneráveis/estatística & dados numéricos , Adolescente , Criança , Feminino , Alemanha/epidemiologia , Estilo de Vida Saudável , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Fatores de Risco , Classe Social , Migrantes/psicologia , Migrantes/estatística & dados numéricos , Resultado do Tratamento , Populações Vulneráveis/psicologia
8.
J Pediatr Endocrinol Metab ; 23(6): 565-78, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20662330

RESUMO

Psychosexual development is influenced by biological and psychosocial factors. Human beings show a great variability in psychosexual development both between and within gender-groups. However, there are relatively stable gender-related behaviors and self-perceptions, in which males and females differ distinctly. There is strong evidence that high concentrations of androgens lead to more male-typical behavior and that this also influences gender identity. Disorders of sex development (DSD) provide the opportunity to analyze the role of different factors on psychosexual development. We examined 166 children age 4 to 12 with DSD using instruments concerning gender role behavior, gender identity, and friendship. Results underline the hypothesis, that androgens play a decisive role in the masculinization of gender role behavior in children. There are also some relations between the experience of gender change and psychosexual outcomes which have to be discussed. Nevertheless, results indicated a high congruence between the children's gender identity and gender of rearing.


Assuntos
Transtornos do Desenvolvimento Sexual/psicologia , Identidade de Gênero , Desenvolvimento Psicossexual/fisiologia , Desenvolvimento Sexual , Criança , Pré-Escolar , Transtornos do Desenvolvimento Sexual/genética , Transtornos do Desenvolvimento Sexual/fisiopatologia , Feminino , Amigos/psicologia , Humanos , Masculino
9.
Artigo em Alemão | MEDLINE | ID: mdl-20936443

RESUMO

Demands for prevention in the areas of child protection, child development and early education are increasingly being discussed in the health care system, social services and the educational and school system. Concepts in health care include health promotion, risk assessment and primary and secondary prevention. Child protection promotes strategies such as early social support services and at-risk screening and educational systems advocate early intervention and concepts to enhance child development. The complexity of children's developmental needs and their living environments require a comprehensive approach of all three systems and integration of services and interventions. Each child's needs must be individually analysed and services tailored appropriately. A case vignette demonstrates and analyses typical problems of interacting systems. A systemic view of systems of care allows planning of efficient and sustainable social and health care policies.


Assuntos
Serviços de Saúde do Adolescente/organização & administração , Maus-Tratos Infantis/prevenção & controle , Serviços de Saúde da Criança/organização & administração , Proteção da Criança , Atenção à Saúde/organização & administração , Programas Governamentais/organização & administração , Adolescente , Criança , Feminino , Alemanha , Humanos , Relações Interinstitucionais , Masculino , Equipe de Assistência ao Paciente/organização & administração
10.
Neuropediatrics ; 40(3): 112-9, 2009 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20020395

RESUMO

PURPOSE: The study aimed at collecting regional data to support and establish evidence-based decision-making. METHODS: We investigated a cohort of 154 preterm infants with gestational age <27+0 weeks born between 1997 and 1999 in a defined region of Northern Germany regarding neurosensory and cognitive outcomes, overall disability status, behavioral problems, and health-related quality of life at the age of seven to nine years (mean: eight years, SD seven months). RESULTS: 92 (60%) infants survived, 75 of these 92 (82%) were followed-up. Rates of disability were high: only 27 (36%) showed 'no dysfunction' of neurosensory status, 33 (44%) 'mild dysfunction', 5 (7%) 'moderate dysfunction' and 10 (13%) 'severe dysfunction', including 8 (11%) with non-ambulatory cerebral palsy. 19 (26%) were mentally retarded. Parents reported behavioral problems in 21 (28%), health-related quality of life was lower in preterm infants compared to a representative normal sample. In multivariate analyses IVH III-IV/PVL was an independent risk factor for adverse outcomes. Behavior problems were predicted by low IQ and lower educational level of the mother. CONCLUSIONS: Overall our results confirm high levels of mortality and morbidity in extremely immature infants. Regional data should include mortality, morbidity and health-related quality of life to adequately inform parents about the prognosis.


Assuntos
Comportamento Infantil , Desenvolvimento Infantil/fisiologia , Cognição/fisiologia , Nível de Saúde , Doenças do Prematuro , Qualidade de Vida , Criança , Estudos de Coortes , Planejamento em Saúde Comunitária , Deficiências do Desenvolvimento , Feminino , Alemanha/epidemiologia , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Doenças do Prematuro/mortalidade , Doenças do Prematuro/fisiopatologia , Doenças do Prematuro/psicologia , Masculino , Testes Neuropsicológicos , Avaliação de Resultados em Cuidados de Saúde , Estudos Retrospectivos , Inquéritos e Questionários
11.
Reprod Biomed Online ; 17(3): 403-9, 2008 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18765012

RESUMO

There are only scarce data on the incidence of spontaneous pregnancy in infertility patients. Contraception after infertility treatment is another topic that has been neglected so far. Therefore, a questionnaire was sent to 1614 couples with a child conceived by intracytoplasmic sperm injection (ICSI) aged 4-6 years. A total of 899 couples responded (response rate 55.7%). A total of 10.9% of couples had used contraception. Of the couples that had actively tried to conceive, 20.0% had conceived spontaneously, resulting in a live-birth rate of 16.4%. 74.5% of these pregnancies were conceived within 2 years after delivery. A further 26.6% of couples conceived again by ICSI, with a live-birth rate of 20.9%. Maternal age was the only prognostic factor for spontaneous conception. Parents of multiples after ICSI did not have a higher chance of spontaneous conception than parents of singletons. Couples can be counselled that one out of five couples conceive spontaneously after successful ICSI. Even when assuming that none of the families that were lost to follow-up had conceived spontaneously, one out of eight couples would have conceived spontaneously. Therefore, it is important to counsel patients about the possibility of natural conception and necessity to use contraception despite their history of subfertility.


Assuntos
Fertilização , Gravidez , Injeções de Esperma Intracitoplásmicas , Estudos de Coortes , Anticoncepção/estatística & dados numéricos , Feminino , Humanos , Infertilidade/etiologia , Infertilidade/terapia , Masculino , Idade Materna , Taxa de Gravidez
12.
Child Care Health Dev ; 34(3): 355-66, 2008 May.
Artigo em Inglês | MEDLINE | ID: mdl-18410641

RESUMO

AIM: Increasingly, families' perspectives are taken into account in the appraisal of health services. The objective of this study was to cross-culturally analyse concepts related to healthcare needs, healthcare utilization and the appraisal and satisfaction with care of parents of children with chronic conditions with the aim of developing a cross-cultural measure. METHODS: Several approaches were employed in the study: (i) a deductive approach integrating existing measurements; and (ii) an inductive approach based on focus groups. Focus groups were conducted in seven countries with mothers and fathers as well as their children with seven different chronic conditions, and qualitatively analysed. RESULTS: As a result of an evaluation of the different existing methodological approaches, the basic structural components were identified: healthcare needs, the receipt of services, problems with receiving services as well as the appraisal of and satisfaction with the quality of care. While items referring to existing healthcare services were primarily derived by the work of an expert group, items related to quality of care and satisfaction with services mainly evolved from the focus group work. From the focus groups, 367 statements were extracted, which were further processed in a Q-sort rating by a multinational expert group in order to identify domains and salient items. The draft questionnaire to be pilot tested cross-nationally consisted of 101 items which were reduced on the basis of psychometric findings. CONCLUSION: On the basis of results of focus groups and existing evidence, a comprehensive measure should be employed in paediatric health services research including structural, process and outcome parameters of care from the perspective of parents.


Assuntos
Serviços de Saúde da Criança/normas , Doença Crônica/terapia , Pesquisa sobre Serviços de Saúde/métodos , Pais , Qualidade da Assistência à Saúde , Inquéritos e Questionários , Criança , Comparação Transcultural , Grupos Focais , Acessibilidade aos Serviços de Saúde/normas , Humanos , Satisfação do Paciente , Projetos Piloto
13.
Child Care Health Dev ; 34(6): 806-14, 2008 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-18959578

RESUMO

AIM: The aim of this report is to describe the health status of 8-12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ). METHOD: A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health. RESULTS: PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors. CONCLUSION: This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.


Assuntos
Paralisia Cerebral/epidemiologia , Nível de Saúde , Transtornos das Habilidades Motoras/epidemiologia , Atividades Cotidianas , Paralisia Cerebral/fisiopatologia , Criança , Métodos Epidemiológicos , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Transtornos das Habilidades Motoras/fisiopatologia , Psicometria , Qualidade de Vida
14.
Early Hum Dev ; 120: 67-73, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29674248

RESUMO

BACKGROUND: Outcomes after extremely preterm birth (<28 weeks gestation) have been studied intensely, and follow-up into adulthood is well-established. Following the introduction of the International Classification of Functioning, Disability and Health, participation has been recognized to be a relevant outcome in rehabilitation research. During adolescence, participation is crucial to adapting to new social roles. The aim of our study was to investigate participation in the domains Autonomy, Relationships and Community Recreation. METHODS: Participation was assessed as part of a cross-sectional, population-based study in a German federal state examining all adolescents born between January 1997 and December 1999 at under 27 weeks gestation. Of the surviving 90 adolescents, 72 (80%) were followed-up at age 14 to 17. Frequency of participation was assessed using the short form of the Questionnaire of Young People's Participation and compared to matched peers. Associations with physical, cognitive, and psychological functioning and contextual factors were examined using multivariate regression. RESULTS: Frequency of participation in Autonomy, Relationships, and Community Recreation in adolescents born extremely preterm was significantly lower than that of matched peers from the general population (p < 0,001). Lower frequency of participation in Autonomy and Relationships was associated with severe physical and cognitive impairment, and psychological problems. Fifty-seven percent of the adjusted variance in Autonomy and 31% of the adjusted variance in Relationships was explained by our regression models. CONCLUSION: Further research is warranted to investigate additional factors associated with the restricted frequency of participation of adolescents born preterm to design suitable interventions for improving participation.


Assuntos
Lactente Extremamente Prematuro , Comportamento Social , Adolescente , Peso ao Nascer , Cognição/fisiologia , Estudos de Coortes , Estudos Transversais , Feminino , Alemanha , Humanos , Recém-Nascido , Modelos Lineares , Masculino , Análise Multivariada , Fatores Socioeconômicos , Inquéritos e Questionários
15.
J Psychosom Res ; 109: 63-70, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29580563

RESUMO

OBJECTIVE: This study aims at identifying predictors of generic health-related quality of life (HRQoL) in chronically ill children and adolescents over time. The newly developed computer-adaptive test Kids-CAT was used to assess five dimensions of HRQoL. METHODS: Longitudinal data from the Kids-CAT study on children and adolescents with asthma, diabetes and juvenile arthritis (n = 248; aged 7-17 years) were assessed at three measurement points over six months. Individual growth modeling served to investigate effects of sociodemographic, disease- and health-related as well as psychosocial factors on HRQoL dimensions Physical Well-Being (WB), Psychological WB, Parent Relations, Social Support & Peers, and School WB over time. RESULTS: Besides effects of sociodemographic variables on HRQoL dimensions Social Support & Peers as well as School WB, we found that a longer duration of the disease was associated with better Physical WB. Lower scores were found for patients with juvenile arthritis compared to those with diabetes in HRQoL dimensions Physical WB and Social Support & Peers. Disease control was positively related to Physical and Psychological WB over time. Mental health problems were negatively associated with four, and subjective health complaints with all five HRQoL dimensions over time. Parental mental health was positively related to the patients' HRQoL score in Parent Relations over time. CONCLUSIONS: HRQoL as a multidimensional construct is associated with a wide range of different factors. Pediatricians should consider potential mental health problems and subjective health complaints in their patients. Finally, parental HRQoL can affect HRQoL in chronically ill children and adolescents.


Assuntos
Doença Crônica/psicologia , Qualidade de Vida/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Inquéritos e Questionários , Fatores de Tempo
17.
Pediatrics ; 103(6 Pt 1): 1235-42, 1999 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-10353935

RESUMO

OBJECTIVE: This study examines 1) the way that children with chronic conditions are cared for at home and assisted by technology affects maternal employment and child care; 2) the social and clinical factors associated with the decision of a mother to quit employment to care for a child at home; and 3) the way in which care at home and the decision of a mother to quit a job affects maternal mental health. DESIGN: The 6-month postdischarge status of 70 mothers of children assisted by technology (study group) was compared with the 6-month postdischarge status of 58 mothers of children (matched for age and gender) hospitalized for acute illnesses (comparison group). Between January and December 1993, we gathered information on sociodemographic status, employment status and changes in employment, severity of the child's condition, child care and nursing services at home, family support, and maternal mental health. RESULTS: One third of mothers in the study group reported that they quit employment to take care of a child at home with only 37.1% remaining employed outside the home, compared with 69.0% of comparison group mothers. Single caretakers were 15 times more likely to quit employment compared with mothers in two-parent families. Availability of child care had an independent effect on a mother's decision to quit a job, whereas the severity of the child's condition did not. Child care hours were significantly lower in study group families and were provided mostly by relatives compared with day-care facilities and regular babysitters in comparison families. Family support was highest among employed mothers in both the study and the comparison groups and lowest in study group mothers who were neither employed currently nor before the child's illness or who had quit employment to care for the child. Family income was significantly lower in families with a child assisted by technology. Families in the study group had 20-fold higher uncompensated health care costs than did the comparison group. Mothers caring for a child assisted by technology reported less good mental health than did comparison group mothers, and employment seems to mediate this relationship. CONCLUSIONS: Caring for a child assisted by technology seems to create barriers to maternal employment diminishing family resources at a time when financial needs actually may increase. Lack of family support and child care services increase the likelihood that mothers of children assisted by technology will stay out of the labor force. Remaining employed buffers the negative effects of care at home on maternal mental health. Health policies for children with chronic health problems should address issues of financial burdens and the labor force participation of their caretakers.


Assuntos
Crianças com Deficiência , Emprego , Assistência Domiciliar/psicologia , Bem-Estar Materno , Saúde Mental , Mães/psicologia , Doença Aguda , Adulto , Criança , Cuidado da Criança , Pré-Escolar , Doença Crônica , Efeitos Psicossociais da Doença , Estudos Transversais , Saúde da Família , Feminino , Humanos , Lactente , Masculino , Ciência de Laboratório Médico , Relações Mãe-Filho , Qualidade de Vida , Tecnologia Assistiva , Fatores Socioeconômicos , Estados Unidos
18.
J Dev Behav Pediatr ; 19(4): 273-82, 1998 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-9717137

RESUMO

This study examines the health outcomes of mothers of children assisted by technology and their associations with condition severity and family and social support. The 6-month postdischarge status of 65 mothers of children assisted by technology was compared with that of 54 mothers of children (matched for age and sex) hospitalized for acute illnesses. We measured maternal health, emotional well-being (Center for Epidemiologic Studies Depression Scale), severity of the child's condition, family functioning, social support, and sociodemographic data. Mothers in the study group reported impaired health related to pain, vitality, social functioning, and mental health and substantially more depressive symptoms than mothers in the control group (p < .001), with almost half having scores suggesting clinical depression. Family supportiveness and opportunities for recreational and cultural activities were significantly lower in families with children assisted by technology. After controlling for sociodemographic variables, high condition severity (p < .01), lack of family support (p = .05), low social support appraisal (p < .01), and high levels of receipt of social support (p < .01) were associated with more depressive symptoms of mothers in the study group. Six months after diagnosis or major hospitalization, the severity of the condition was highly associated with maternal emotional well-being, with family support and social support appraisal having moderate independent positive effects. The receipt of social support indicated need rather than support and was negatively associated with well-being. Discharge planning and support systems need to focus on both the child and the prevention of secondary social and psychological morbidity of caretakers.


Assuntos
Cuidadores , Crianças com Deficiência/psicologia , Saúde da Família , Assistência de Longa Duração/psicologia , Mães , Tecnologia Assistiva/psicologia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Estudos de Casos e Controles , Distribuição de Qui-Quadrado , Criança , Estudos Transversais , Depressão/epidemiologia , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Assistência Domiciliar/psicologia , Humanos , Modelos Lineares , Masculino , Massachusetts/epidemiologia , Mães/psicologia , Mães/estatística & dados numéricos , Análise Multivariada , Índice de Gravidade de Doença , Apoio Social
19.
Child Abuse Negl ; 19(11): 1337-47, 1995 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-8591090

RESUMO

Secondary prevention of child abuse and neglect aims at protecting children who live in high-risk environments when overt abuse has not yet occurred, but is likely to occur in the future. Several screening strategies to identify families at high risk for child maltreatment have been reported in the literature, none of which has been translated into practice so far. For practical but foremost ethical reasons, general screening programs to identify vulnerable children and families cannot be recommended. Traditional welfare and health-care agencies have encountered difficulties in reaching out to population groups believed to be at higher risk for child maltreatment. The system of care or services often contributes to isolation, defensiveness, and noncompliance of families. The concept for the Child Protection Center in Lübeck focused on a nonpunitive, self-help approach to reach out to families and encourage them to determine their own needs. There is a significant guarantee not to involve law enforcing agencies or to initiate court proceedings without the families' consent. Over half of all the families seen in the Center over a 2-year period were self-reported, almost a fifth of all families received help to prevent violence against children before child abuse or neglect had yet occurred. We conclude that nonpunitive concepts that avoid labeling and stigmatizing, and offer free, easy accessible, family oriented services will help prevent child maltreatment.


Assuntos
Maus-Tratos Infantis/prevenção & controle , Serviços de Saúde Comunitária , Relações Pais-Filho , Adulto , Criança , Serviços de Saúde Comunitária/organização & administração , Alemanha , Humanos , Controle Social Formal
20.
Child Abuse Negl ; 21(2): 187-98, 1997 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-9056098

RESUMO

This study examined factors associated with clinicians' concerns about abuse and neglect and reporting hospitalized children to Child Protective Services (CPS). Data came from a cross-sectional chart review from a random sample of pediatric hospitalizations 1988-1990 in three cities for five condition groups (n = 5,446), and included evidence of clinicians' concerns about physical abuse or neglect and reports to CPS, family income, ethnicity, family structure, child's age, and illness severity at admission. Concerns about abuse were noted in 2.5% of the total sample, concerns about neglect in 3.1%, and 2.9% of children were reported to CPS. Concerns about abuse were most frequent in children with head trauma (8.2%), and concerns about neglect in children with toxic ingestion (12.3%). Young age of child, low income, and single parent family were independently associated with increased frequencies of concerns and reports. Low income was significantly associated with clinicians' concerns about neglect, but not abuse or reports to CPS. Ethnicity was not significant after controlling for income and family structure. Severity of illness was associated with concerns about physical abuse (p = .02) among children with head trauma, and with concerns about neglect and frequency of reporting among children with meningitis (p < .01). Our results confirm the associations among neglect, poverty, and single-parent families among hospitalized children. Increasing severity of illness may make clinicians consciously or unconsciously consider that care has been delayed and the child neglected.


Assuntos
Maus-Tratos Infantis/estatística & dados numéricos , Hospitalização , Criança , Maus-Tratos Infantis/diagnóstico , Maus-Tratos Infantis/etnologia , Criança Hospitalizada , Pré-Escolar , Traumatismos Craniocerebrais/classificação , Traumatismos Craniocerebrais/etiologia , Estudos Transversais , Feminino , Humanos , Lactente , Escala de Gravidade do Ferimento , Masculino , Intoxicação , Pobreza , Distribuição Aleatória , Pais Solteiros , Fatores Socioeconômicos
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