RESUMEN
The objective of this study was to investigate satisfaction with and feasibility of an online cognitive behavioral-based group intervention (OK Onco Online) for adolescent childhood cancer survivors (CCS). The intervention, carried out by pediatric psychologists, aimed to prevent psychosocial problems. High levels of satisfaction were reported by the psychologists (n=6) and the CCS (n=11, age 1117). The dropout rate was very low. Some recommendations for optimizing the intervention were mentioned. In conclusion, the positive evaluations by the CCS and the psychologists indicate that the online chat intervention OK Onco Online is a promising innovative group intervention for adolescent CCS. Further research is needed to confirm feasibility and to establish efficacy.
Asunto(s)
Terapia Cognitivo-Conductual/métodos , Internet , Neoplasias/psicología , Psicoterapia de Grupo/métodos , Sobrevivientes/psicología , Adaptación Psicológica , Adolescente , Actitud del Personal de Salud , Niño , Estudios de Factibilidad , Humanos , Neoplasias/terapia , Satisfacción del Paciente/estadística & datos numéricos , Proyectos Piloto , Psicología Infantil , Sobrevivientes/estadística & datos numéricos , Resultado del TratamientoRESUMEN
This study aimed to assess health-related quality of life (HRQOL)-mean scores and percentages at risk for impaired HRQOL in childhood brain tumor survivors (CBTS) and to explore differences between CBTS treated with surgery only (SO) versus CBTS treated with surgery and adjuvant therapy (SA). HRQOL was evaluated in 34 CBTS (mean age=14.7 y; mean time since the end of treatment=6.4 y) with the KIDSCREEN. Being at risk for impaired HRQOL was defined as a T-score ≥1 SD below the norm population mean. The total and the SA group, but not the SO group, had significantly lower mean scores than the Dutch norm population in the domains of "physical well-being," "psychological well-being," and "peers and social support." High percentages (35% to 53%) of both the SO and the SA groups appeared to be at risk for impaired HRQOL in the domains of "physical well-being," "moods and emotions," "peers and social support," and "bullying," compared to 16% in the norm population. In conclusion, although HRQOL in some domains appeared similar to the norm population, a considerable number of CBTS-reported impaired HRQOL in several other domains. It is recommended to systematically monitor HRQOL in CBTS regardless of the therapy applied.
Asunto(s)
Neoplasias Encefálicas/psicología , Calidad de Vida/psicología , Sobrevivientes/psicología , Adolescente , Neoplasias Encefálicas/terapia , Niño , Femenino , Estado de Salud , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
AIM: This study aimed to compare a broad array of neurocognitive functions (processing speed, aspects of attention, executive functioning, visual-motor coordination, and both face and emotion recognition) in very preterm and term-born children and to identify perinatal risk factors for neurocognitive dysfunctions. METHOD: Children who were born very preterm (n=102; 46 males, 56 females), defined as a gestational age of less than 30 weeks and/or birthweight under 1000 g, and a comparison group of term-born children (n=95; 40 males, 55 females) were assessed at age 5 with the Wechsler Preschool and Primary Scale of Intelligence, Stop Signal Task, several tasks of the Amsterdam Neuropsychological Tasks, and a Digit Span task. RESULTS: When sociodemographic characteristics were taken into account, very preterm children scored worse than term-born children on all neurocognitive functions, except on tasks measuring inhibition and sustained attention, for which results were inconclusive. Effect sizes for group effects were small to medium (r(2) varying between 0.02 and 0.07). Principal component isolated four factors: visual-motor coordination, face/emotion recognition, reaction time/attention, and accuracy/attention. When sociodemographic and child characteristics at birth were accounted for, bronchopulmonary dysplasia was significantly negatively associated with all four components and also with working memory. INTERPRETATION: Very preterm children are at risk for problems on a broad array of neurocognitive functions. Bronchopulmonary dysplasia is an independent risk factor for impaired neurocognitive functioning.
Asunto(s)
Trastornos del Conocimiento/etiología , Cognición , Función Ejecutiva , Recien Nacido Extremadamente Prematuro/psicología , Inteligencia , Atención , Preescolar , Trastornos del Conocimiento/diagnóstico , Femenino , Edad Gestacional , Humanos , Inhibición Psicológica , Masculino , Memoria a Corto Plazo , Pruebas Neuropsicológicas , Estudios Prospectivos , Factores de RiesgoRESUMEN
AIM: This study investigated prediction of separate cognitive abilities at the age of 5 years by cognitive development at the ages of both 2 and 3 years, and the agreement between these measurements, in very preterm children. METHODS: Preterm children (n=102; 44 males; 58 females) with a gestational age less than 30 weeks and/or birthweight less than 1000g were assessed at the ages of 2 and 3 years using the second edition of the Bayley Scales of Infant Development, the Child Behaviour Checklist, and a neurological examination, and at the age of 5 years using the third edition of the Wechsler Preschool and Primary Scale of Intelligence. RESULTS: Cognitive development at ages 2 and 3 years explained 44% and 57% respectively of full-scale intelligence at the age of 5 years. Adding psychomotor, neurological, and behavioural outcomes to the regression model could not or only marginally improve the prediction; adding perinatal and sociodemographic characteristics to the regression model increased the explained variance to 57% and 64% respectively. These percentages were comparable for verbal intelligence. Processing speed quotient and especially performance intelligence were predicted less accurately. INTERPRETATION: Not all aspects of intelligence are predicted sufficiently by the Mental Development Index at ages 2 and 3 years. Follow-up of very preterm children until at least the age of 5 years is needed to distinguish between different aspects of cognitive development.
Asunto(s)
Trastornos del Conocimiento/diagnóstico , Trastornos del Conocimiento/etiología , Discapacidades del Desarrollo/fisiopatología , Recien Nacido Prematuro , Síntomas Conductuales/diagnóstico , Síntomas Conductuales/etiología , Preescolar , Femenino , Edad Gestacional , Humanos , Recién Nacido , Estudios Longitudinales , Masculino , Examen Neurológico , Pruebas Neuropsicológicas , Valor Predictivo de las Pruebas , Nacimiento Prematuro , Estadística como AsuntoRESUMEN
AIM: To investigate differences in the quality of mother-child interaction between preterm- and term-born children at age 5, and to study the association of mother-child interaction with sociodemographic characteristics and child disability. METHODS: Preterm children (n = 94), born at <30 weeks' gestation and/or birth weight <1000 g, and term children (n = 84) were assessed at corrected age of 5 using a mother-child interaction observation. Disabilities were assessed using an intelligence test, behaviour questionnaires for parents and teachers, and motor and neurological examinations. RESULTS: Mothers of preterm-born children were less supportive of and more interfering with their children's autonomy than mothers of term-born children. This difference was only partly explained by sociodemographic factors. Dyads showed a lower quality of mother-child interaction if children had a severe disability, especially when mothers had a lower level of education. CONCLUSION: Five years after birth, mother-child interaction of very premature children and their mothers compared unfavourably with term children and their mothers. Mothers with sociodemographic disadvantages, raising a preterm child with severe disabilities, struggle most with giving adequate sensitive support for the autonomy development of their child. Focused specialized support for these at risk groups is warranted.
Asunto(s)
Discapacidades del Desarrollo/psicología , Enfermedades del Prematuro/psicología , Recien Nacido Prematuro , Conducta Materna , Relaciones Madre-Hijo , Nacimiento a Término , Preescolar , Estudios de Cohortes , Estudios Transversales , Humanos , Recién Nacido , Factores SocioeconómicosRESUMEN
OBJECTIVES: To describe the prevalence and co-occurrence of disabilities and their association with parental education in preterm children and term control subjects. STUDY DESIGN: In a prospective study, preterm children (n=104), born at <30 weeks' gestation or birth weight <1000 g, and term children (n=95) were assessed at corrected age 5 with an intelligence quotient (IQ) test, behavior questionnaires for parents and teachers, and motor and neurologic tests. A disability was defined as results in the mild abnormal range of each test or below. Associations of outcomes with parental education were studied. RESULTS: Of the preterm children, 75% had at least one disability and 50% more than one, compared with 27% and 8%, respectively, of term control subjects (P<.01). The preterm-term difference in full scale IQ increased from 5 IQ points if parental education was high to 14 IQ points if it was low, favoring the term children in both groups. A similar pattern was found for behavior, but not for motor and neurologic outcome. CONCLUSIONS: Disabilities occur frequently after very preterm birth and tend to aggregate. Neurologic and motor outcomes are mostly influenced by biologic risk, and social risks contribute to cognitive and behavioral outcome.
Asunto(s)
Trastornos de la Conducta Infantil/epidemiología , Discapacidades del Desarrollo/epidemiología , Recien Nacido Prematuro , Análisis de Varianza , Estudios de Casos y Controles , Preescolar , Escolaridad , Femenino , Estudios de Seguimiento , Edad Gestacional , Humanos , Recien Nacido con Peso al Nacer Extremadamente Bajo , Recién Nacido , Pruebas de Inteligencia , Masculino , Países Bajos/epidemiología , Examen Neurológico , Pruebas Neuropsicológicas , Padres , Estudios Prospectivos , Encuestas y Cuestionarios , Nacimiento a TérminoRESUMEN
PURPOSE: Whilst the need for aftercare for long-term sequelae of brain tumor survivors is well known and evident, information from a parent's perspective is lacking on whether the need for aftercare is detected in time, and whether the aftercare is timely initiated and meets the needs for aftercare. METHODS: A survey regarding aftercare in five domains of long-term sequelae (neurocognitive, physical, emotional, social and parenting problems) was sent to 57 parents of survivors treated for a brain tumor in our center. RESULTS: Forty-two (74%) parents participated in this study. With a mean period of 8.1 years (SD = 3.9) since start of treatment, the majority of the survivors (mean age = 14.7 years, SD = 3.8) needed aftercare in several domains of functioning. This need was highest and most met for physical sequelae (N = 34), and lowest but still substantial and least met for parental difficulties (N = 11). Parents of survivors with surgery only as treatment reported a similar need for aftercare as those of survivors with adjuvant therapy. Most of the survivors received aftercare; however, substantial delay of aftercare and self-referral for aftercare were frequently reported. Furthermore, parents showed a lack of knowledge about and use of aftercare services. CONCLUSIONS: Increased awareness for the need for psychosocial aftercare is required. Coaching, psycho-educative programs about coping with the long-term sequelae and information about available specialized aftercare services are required to meet the needs of brain tumor survivors and their parents more adequately.
Asunto(s)
Cuidados Posteriores/organización & administración , Neoplasias Encefálicas/terapia , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Sobrevivientes/psicología , Adolescente , Neoplasias Encefálicas/complicaciones , Niño , Preescolar , Recolección de Datos , Femenino , Estudios de Seguimiento , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Padres , Derivación y Consulta , Factores de Tiempo , Adulto JovenRESUMEN
BACKGROUND: Coping with a chronic illness (CI) challenges children's psychosocial functioning and wellbeing. Cognitive-behavioral intervention programs that focus on teaching the active use of coping strategies may prevent children with CI from developing psychosocial problems. Involvement of parents in the intervention program may enhance the use of learned coping strategies in daily life, especially on the long-term. The primary aim of the present study is to examine the effectiveness of a cognitive behavioral based group intervention (called 'Op Koers') 1 for children with CI and of a parallel intervention for their parents. A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect. METHODS/DESIGN: This study is a multicentre randomized controlled trial. Participants are children (8 to 18 years of age) with a chronic illness, and their parents, recruited from seven participating hospitals in the Netherlands. Participants are randomly allocated to two intervention groups (the child intervention group and the child intervention combined with a parent program) and a wait-list control group. Primary outcomes are child psychosocial functioning, wellbeing and child disease related coping skills. Secondary outcomes are child quality of life, child general coping skills, child self-perception, parental stress, quality of parent-child interaction, and parental perceived vulnerability. Outcomes are evaluated at baseline, after 6 weeks of treatment, and at a 6 and 12-month follow-up period. The analyses will be performed on the basis of an intention-to-treat population. DISCUSSION: This study evaluates the effectiveness of a group intervention improving psychosocial functioning in children with CI and their parents. If proven effective, the intervention will be implemented in clinical practice. Strengths and limitations of the study design are discussed. TRIAL REGISTRATION: Current Controlled Trials ISRCTN60919570.
Asunto(s)
Adaptación Psicológica , Enfermedad Crónica/psicología , Terapia Cognitivo-Conductual , Padres/psicología , Adolescente , Niño , Humanos , Relaciones Padres-Hijo , Calidad de Vida , Estrés Psicológico/terapiaRESUMEN
OBJECTIVE: To study posttraumatic stress disorder (PTSD) in parents after unexpected pediatric intensive care unit (PICU) treatment of their child and to identify risk factors for its development. METHOD: Parents completed PTSD questionnaires 3 and 9 months (N = 190) after PICU treatment. Risk factors included pretrauma data, medical data, social demographics and posttraumatic stress responses at 3 months. RESULTS: In total, 30.3% of parents met criteria for subclinical PTSD and 12.6% for clinical PTSD at 3 months. Clinical PTSD prevalence rates did not change over time. At 9 months, 10.5% of parents still met criteria for PTSD. Number of earlier stressful life events, earlier psychosocial care and posttraumatic stress responses at 3 months predicted persistent subclinical and clinical PTSD. CONCLUSIONS: PICU admission is a stressful event associated with persistent parental PTSD. Assessment of risk factors can facilitate detection of persistent PTSD for early intervention.
Asunto(s)
Cuidados Críticos/psicología , Padres/psicología , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/psicología , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Unidades de Cuidado Intensivo Pediátrico , Masculino , Escalas de Valoración Psiquiátrica , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The present paper reports about the content and evaluation of a psycho-educational group intervention for children growing up with a history of cancer, Op Koers Oncologie (OK Onco). OK Onco is aimed at empowerment of survivors of childhood cancer by teaching disease-related skills. The purpose of this pilot study is to evaluate whether OK Onco was appropriate for use among paediatric survivors of childhood cancer. METHODS: Eleven participating children and their parents completed questionnaires about the disease-related skills that were taught in the intervention, before the intervention and 0-4 weeks after the intervention. In addition, parents were interviewed in focus groups. RESULTS: Positive outcomes were found on most items concerning disease-related skills. Remarkable improvements were found with respect to the intervention goals 'social competence' and 'positive thinking'. The parents reported that sharing emotions and experiences with other survivors of childhood cancer was an important element of the OK Onco program, which underscores the benefit of a disease-specific program for cancer survivors. CONCLUSIONS: In conclusion, the results of the pilot study indicate that OK Onco is appropriate for paediatric survivors of childhood cancer. Implementation of the intervention is the next challenge.
Asunto(s)
Linfoma de Burkitt/psicología , Linfoma de Burkitt/terapia , Leucemia/psicología , Leucemia/terapia , Neoplasias/psicología , Neoplasias/terapia , Educación del Paciente como Asunto , Poder Psicológico , Psicoterapia de Grupo , Rol del Enfermo , Sobrevivientes/psicología , Adaptación Psicológica , Niño , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud , Terapia por Relajación , Autocuidado/psicología , Resultado del TratamientoRESUMEN
BACKGROUND: Behavioral and emotional problems in children with sickle cell disease (SCD) may be related to disease factors, or to socio-demographic factors. The aim of this study was to investigate the prevalence of behavioral and emotional problems in children with SCD living in a Western European country, compared to healthy siblings (who were comparable in age, gender, ethnicity, and socio-economic status-SES), and to a Dutch norm population. METHODS: The Child Behavior Checklist (CBCL), Teacher Report Form (TRF) and Disruptive Behavior Disorders rating scale (DBD) were distributed among caregivers and teachers of 119 children with SCD aged 6-18 years and among caregivers and teachers of 38 healthy siblings. RESULTS: Questionnaires were returned by caregivers and/or teachers of 106 children with SCD and 37 healthy siblings. According to caregivers and teachers, children with SCD had more severe internalizing problems than healthy siblings and the norm population. According to teachers, subgroups of both children with SCD and healthy siblings had more severe externalizing problems than the norm population. Children with SCD had more difficulties than healthy siblings in terms of school functioning, showed less competent social behavior and tended to have more attention deficits. CONCLUSIONS: Children with SCD are at increased risk of developing internalizing problems as a result of their disease. Subgroups of children with SCD are at increased risk of developing severe externalizing problems, which may either be related to socio-demographic factors, or to disease factors, such as neurocognitive deficits associated with cerebral infarction.
Asunto(s)
Síntomas Afectivos/epidemiología , Anemia de Células Falciformes/psicología , Trastornos de la Conducta Infantil/epidemiología , Emigrantes e Inmigrantes/psicología , Hermanos/psicología , Adolescente , Síntomas Afectivos/etiología , Cuidadores , Niño , Trastornos de la Conducta Infantil/etiología , Docentes , Femenino , Genotipo , Enfermedad de la Hemoglobina SC/psicología , Humanos , Discapacidades para el Aprendizaje/epidemiología , Discapacidades para el Aprendizaje/etiología , Masculino , Países Bajos/epidemiología , Padres , Índice de Severidad de la Enfermedad , Rasgo Drepanocítico/complicaciones , Rasgo Drepanocítico/psicología , Conducta Social , Factores Socioeconómicos , Encuestas y Cuestionarios , Talasemia beta/complicaciones , Talasemia beta/psicologíaRESUMEN
Atopic dermatitis mainly covers the period of infancy to adulthood, an important period in the development of an individual. The impairment of quality of life and the psychological wellbeing of children with atopic dermatitis have been well documented but so far no data exist about the impact of atopic dermatitis in childhood on fulfilling age-specific developmental tasks and achieving developmental milestones during this period, referred to as the course of life. The aims of this study were to: (i) assess the course of life and define the disease-related consequences in young adult patients with childhood atopic dermatitis and (ii) determine whether the severity of atopic dermatitis is predictive for the course of life, the disease-related consequences and quality of life later in life. Adult patients who grew up with atopic dermatitis were asked to complete a medical history questionnaire, the Skindex-29, the "course of life" questionnaire and a subjective disease-specific questionnaire. Patients with severe atopic dermatitis in childhood showed a significant delayed social development in their course of life. The results of the disease-specific questionnaire demonstrated remarkable high percentages of psycho-social consequences and physical discomfort caused by atopic dermatitis in childhood. Patients showed a severely negative impact of atopic dermatitis on their current quality of life. This is the first study that applied the "course of life" questionnaire in atopic dermatitis. More insight in the course of life, disease-specific consequences and quality of life of atopic dermatitis is of high importance, especially in case of severe atopic dermatitis.
Asunto(s)
Dermatitis Atópica/fisiopatología , Dermatitis Atópica/psicología , Calidad de Vida , Conducta Social , Adolescente , Adulto , Enfermedad Crónica , Estudios Transversales , Femenino , Humanos , Masculino , Valor Predictivo de las Pruebas , Índice de Severidad de la Enfermedad , Sexualidad , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVES: The aim of this study is to investigate parental emotional functioning during the first five years of continuous remission after the end of their child's treatment and to identify predictors of parental emotional functioning. METHODS: Psychological distress and situation-specific emotional reactions were assessed in 122 mothers and 109 fathers from 130 families. Longitudinal mixed model analyses were performed to investigate to what extent generic and disease-related coping, family functioning and social support were predictive of parental emotional functioning over time. RESULTS: Initial elevated levels of distress, disease-related feelings of uncertainty and helplessness returned to normal levels during the first two years after the end of treatment. Being more optimistic about the further course of the child's disease (predictive control) was correlated with lower psychological distress and less negative disease-related feelings, while more passive reaction patterns were correlated with higher psychological distress and more negative disease-related feelings. CONCLUSIONS: Although in general the parents of children with successfully treated cancer showed adequate emotional resilience, support for these parents should not stop when treatment ends. Parents in need of help can be identified on the basis of their coping abilities.
Asunto(s)
Adaptación Psicológica , Emociones , Neoplasias/psicología , Neoplasias/terapia , Padres/psicología , Sobrevivientes/psicología , Adolescente , Adulto , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Acontecimientos que Cambian la Vida , Masculino , Persona de Mediana Edad , Neoplasias/diagnóstico , Inventario de Personalidad , Inducción de Remisión , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
BACKGROUND: The aim of the study was to access Health Related Quality of Life (HRQoL) in preschool cancer survivors during the first 3 years of continuous remission after the end of successful treatment, and to identify predictors of HRQoL. PROCEDURE: Parent-reported HRQoL was assessed in 53 preschool children treated successfully for cancer, using the TAPQOL and compared with norm data. Longitudinal mixed models analyses were performed to investigate to what extent demographic and medical variables and parental psychological distress were predictive of HRQoL over time. RESULTS: Two months after the end of successful cancer treatment, survivors showed significantly (P < 0.01) more problem behavior and anxiety, and scored significantly worse (P < 0.01) on sleeping, motor functioning, positive mood and liveliness than the norm. One year after the end of treatment survivors still showed significantly (P < 0.01) more anxiety and worse motor functioning. The level of HRQoL in survivors had normalized 2 and 3 years after the end of treatment. Longer duration of treatment, bad prognosis and greater parental psychological distress were associated with worse scores on the Physical Component Score of the TAPQOL. Medical variables and parental psychological distress were not associated with the Mental Component Score. CONCLUSIONS: Survivors adjusted well to the cancer experience and HRQoL improved with time. Despite overall resilience in survivors over time, physical as well as psychosocial monitoring in follow-up is recommended. Standard aftercare should preferably include psychosocial screening, education, and counseling directed at both survivors and parents.
Asunto(s)
Actitud Frente a la Salud , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida , Estrés Psicológico , Sobrevivientes , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Estudios Longitudinales , Masculino , Neoplasias/diagnóstico , Padres/psicología , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
CONTEXT: Patients with thyroidal congenital hypothyroidism (CH-T) born in The Netherlands in 1981-1982 showed persistent intellectual and motor deficits during childhood and adulthood, despite initiation of T(4) supplementation at a median age of 28 d after birth. OBJECTIVE: The present study examined whether advancement of treatment initiation to 20 d had resulted in improved cognitive and motor outcome. DESIGN/SETTING/PATIENTS: In 82 Dutch CH-T patients, born in 1992 to 1993 and treated at a median age of 20 d (mean, 22 d; range, 2-73 d), cognitive and motor outcome was assessed (mean age, 10.5 yr; range, 9.6-11.4 yr). Severity of CH-T was classified according to pretreatment free T(4) concentration. MAIN OUTCOME MEASURE: Cognitive and motor outcome of the 1992-1993 cohort in comparison to the 1981 to 1982 cohort was the main outcome measure. RESULTS: Patients with severe CH-T had lower full-scale (93.7), verbal (94.9), and performance (93.9) IQ scores than the normative population (P < 0.05), whereas IQ scores of patients with moderate and mild CH-T were comparable to those of the normative population. In all three severity subgroups, significant motor problems were observed, most pronounced in the severe CH-T group. No correlations were found between starting day of treatment and IQ or motor outcome. CONCLUSIONS: Essentially, findings from the 1992-1993 cohort were similar to those of the 1981-1982 cohort. Apparently, advancing initiation of T(4) supplementation from 28 to 20 d after birth did not result in improved cognitive or motor outcome in CH-T patients.
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Hipotiroidismo Congénito/complicaciones , Hipotiroidismo Congénito/diagnóstico , Inteligencia , Destreza Motora , Tamizaje Neonatal , Niño , Estudios de Cohortes , Hipotiroidismo Congénito/tratamiento farmacológico , Femenino , Estudios de Seguimiento , Humanos , Recién Nacido , Masculino , Países Bajos , Tiroxina/uso terapéutico , Factores de TiempoRESUMEN
OBJECTIVE: To determine the effectiveness of a psycho-educational group intervention for chronically ill children. METHODS: Based on principles from cognitive behavior therapy and information from previous research about children's experiences with coping with a chronic disease we developed an intervention to be used for children with different chronic diseases. The program, called Op Koers (OK), with six sessions for different age groups, was evaluated by standardised and researcher-developed psychological measures. RESULTS: A total of 109 patients participated in the study on the effects of the psycho-educational intervention. Improvements in behavioral-emotional outcomes, social competence, information seeking, relaxation and positive thinking were found both in short and medium term. Additionally, the sessions received positive appraisals. CONCLUSIONS: The program appears to have a significant and positive impact on chronically children. Further research is needed to establish the effects of the intervention. PRACTICE IMPLICATIONS: Beneficial effects can be expected from the implementation of a psycho-educational group intervention for children with heterogeneous chronic health conditions.
Asunto(s)
Adaptación Psicológica , Actitud Frente a la Salud , Enfermedad Crónica/prevención & control , Educación del Paciente como Asunto/organización & administración , Psicología Infantil , Grupos de Autoayuda/organización & administración , Adolescente , Conducta del Adolescente/psicología , Niño , Conducta Infantil/psicología , Enfermedad Crónica/psicología , Terapia Cognitivo-Conductual , Curriculum , Femenino , Humanos , Masculino , Modelos Educacionales , Modelos Psicológicos , Evaluación de Resultado en la Atención de Salud , Poder Psicológico , Evaluación de Programas y Proyectos de Salud , Psicología del Adolescente , Autocuidado/métodos , Autocuidado/psicología , AutoeficaciaRESUMEN
OBJECTIVE: To release a newly protocolized behavioral intervention program for children with chronic constipation aged 4-18 years with guidance from literature about underlying theories from which the treatment techniques follow. METHODS: Articles until July 2006 were identified through electronic searches in Medline, PsychInfo and Picarta. There was no limit placed on the time periods searched. Following keywords were used: constipation, encopresis, fecal incontinence, psychotherapy, emotions, randomized controlled trials, parent-child relations, parents, family, psychology, behavioral, behavioral problems, psychopathology, toilet, social, psychosocial, pain, retentive posturing, stool withholding, stool toileting refusal, shame, stress, anxiety. A filter was used to select literature referring to children 0-18 years old. Key constructs and content of sessions for a protocolized behavioral intervention program are derived from literature. RESULTS: Seventy-one articles on chronic childhood constipation are critically reviewed and categorized into sections on epidemiology, symptomatology, etiology and consequences, treatment and effectivity, and follow-up on chronic childhood constipation. This is followed by an extensive description of our protocolized behavioral intervention program. CONCLUSION: This is the first article on childhood constipation presenting a full and transparent description of a behavioral intervention program embedded in literature. In addition, a theoretical framework is provided that can serve as a trial paradigm to evaluate intervention effectiveness. PRACTICE IMPLICATIONS: This article can serve as an extensive guideline in routine practice to treat chronically constipated children. By releasing our protocolized behavioral intervention program and by offering a theoretical framework we expect to provide a good opportunity to evaluate clinical effectivity by both randomized controlled trials and qualitative research methods. Findings will contribute to the implementation of an effective treatment for chronic constipation in childhood.
Asunto(s)
Terapia Conductista/métodos , Protocolos Clínicos , Estreñimiento/psicología , Estreñimiento/terapia , Adolescente , Factores de Edad , Niño , Preescolar , Estreñimiento/complicaciones , Incontinencia Fecal/complicaciones , Incontinencia Fecal/psicología , Incontinencia Fecal/terapia , HumanosRESUMEN
OBJECTIVE: Parenting factors are assumed to play a role in the development and maintenance of childhood constipation. However, knowledge about the association between parenting factors and childhood constipation is limited. This study investigates the association between parental child-rearing attitudes and prominent symptoms of functional constipation and assesses the strength of this association. DESIGN: Cross-sectional data of 133 constipated children and their parents were collected. SETTING: The gastrointestinal outpatient clinic at the Emma Children's Hospital in the Netherlands. PATIENTS: Children with functional constipation aged 4-18â years referred by general practitioners, school doctors and paediatricians. MAIN OUTCOME MEASURES: Parental child-rearing attitudes were assessed by the Amsterdam version of the Parental Attitude Research Instrument (A-PARI). Symptoms of constipation in the child were assessed by a standardised interview. Negative binomial and logistic regression models were used to test the association between child-rearing attitudes and constipation symptoms. RESULTS: Parental child-rearing attitudes are associated with defecation and faecal incontinence frequency. Higher and lower scores on the autonomy attitude scale were associated with decreased defecation frequency and increased faecal incontinence. High scores on the overprotection and self-pity attitude scales were associated with increased faecal incontinence. More and stronger associations were found for children aged ≥6â years than for younger children. CONCLUSIONS: Parental child-rearing attitudes are associated with functional constipation in children. Any parenting issues should be addressed during treatment of children with constipation. Referral to mental health services is needed when parenting difficulties hinder treatment or when the parent-child relationship is at risk. TRIAL REGISTRATION NUMBER: ISRCTN2518556.
Asunto(s)
Actitud Frente a la Salud , Crianza del Niño , Estreñimiento/etiología , Padres/psicología , Adolescente , Niño , Preescolar , Estreñimiento/fisiopatología , Estudios Transversales , Defecación/fisiología , Incontinencia Fecal/etiología , Incontinencia Fecal/fisiopatología , Femenino , Humanos , MasculinoRESUMEN
The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (PPCV) in a Dutch community-based sample and its relationship with children's health and health-related quality of life (HRQoL). Parents completed the Child Vulnerability Scale and a socio-demographic questionnaire. The Pediatric Quality of Life Inventory 4.0 was administered to measure HRQoL. The prevalence of PPCV was assessed in relation to socio-demographic and health-related characteristics. In a three-step multiple hierarchical regression model, the mediational role of PPCV in the association between chronic illness and HRQoL was investigated. Participants were 520 Dutch children aged 5-18 years from nine Dutch schools. In all, 69 (13.3%) had a chronic illness; 1.9% was perceived vulnerable, 3.0% in groups 5-7 and 1.7% in groups 8-12 and 13-18. Younger age of the child, presence of a chronic illness and low HRQoL were associated with PPCV. PPCV partially mediated the negative association between chronic illness and HRQoL. In conclusion, PPCV is associated with adjustment to chronic illness. More research is needed regarding the mechanisms through which PPCV affects HRQoL and to examine whether PPCV can be targeted in parenting interventions.
Asunto(s)
Enfermedad Crónica , Padres/psicología , Percepción , Calidad de Vida , Adolescente , Adulto , Niño , Preescolar , Femenino , Estado de Salud , Humanos , Masculino , Países Bajos , Relaciones Padres-Hijo , Factores Socioeconómicos , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To investigate the efficacy of a cognitive-behavioral group intervention for children with chronic illnesses and to test the effect of an added parent component. METHODS: Children (n = 194) and their parents participated in a multicenter randomized clinical trial comparing a child-only intervention and a parent-child intervention to a wait-list control group. Primary outcomes were parent- and self-reported internalizing and externalizing problems; secondary outcomes were child disease-related coping skills (information seeking, relaxation, social competence, medical compliance, and positive thinking). Assessments took place at baseline and at 6- and 12-month follow-ups. Intention-to-treat mixed-model analyses were performed to test the difference in change in outcomes. RESULTS: The intervention had a positive effect on changes in parent-reported internalizing problems, child-reported externalizing problems, information seeking, social competence, and positive thinking. The additional effect of parental involvement was observed on parent-reported internalizing problems, child-reported externalizing problems, information seeking, and social competence. Illness severity and illness type did not moderate the effects. There were no intervention effects on child-reported internalizing problems, parent-reported externalizing problems, relaxation, or medical compliance. Of the families in the wait-list control group, 74% sought alternative psychological support during the intervention period. CONCLUSIONS: This RCT supports the efficacy of a protocol-based group intervention for children with chronic illnesses and their parents. Adding a parental component to the intervention contributed to the persistence of the effects. Future research should focus on moderating and mediating effects of the intervention.